Continuous Glucose Monitoring Chat with Gary Scheiner – 01/21/10

January 22nd, 2010

Gary Scheiner MS, CDE

gary scheiner

As a Certified Diabetes Educator and Type-1 diabetic for 20 years, Gary Scheiner knows and applies the latest techniques for achieving optimal diabetes control. Click here for more on Gary Scheiner

(10:00):Welcome to CGM Chat with Gary Scheiner!

Gary Scheiner, CDE says to (10:02):

Hi everyone!

gina says to (10:02):

me too

digammo says to (10:02):

Hey Gary

landileigh says (10:02):

hey gary!

bjphilly says to (10:02):

hey Gary!

pethridge@its.jnj.com says to (10:03):

good evening!

bjphilly says to (10:03):

hey Scott and Gina

gina says to (10:04):

Betty its great to see you

Gary Scheiner, CDE says to (10:04):

sstrumello, don’t I know you from somewhere?

sstrumello says to bjphilly (10:04):

Hey Betty

bjphilly says to (10:04):

thank you, same for you:)

Danny6820 says to (10:04):

Hello!

Gary Scheiner, CDE says to (10:04):

Betty! I should have known you would be here!

bjphilly says to (10:04):

of course

Sophia says to (10:05):

how many people here have and use a CGM?

bjphilly says to (10:05):

how’s the fam Gary?

Judy&Alli says to (10:05):

My dd has one

gina says to (10:05):

I use the Minimed CGM

PowerPumper says to (10:05):

no cgm

Gary Scheiner, CDE says to (10:06):

Everyone’s good. Even the teenager.

bjphilly says to (10:06):

no cgm yet

stark says to (10:06):

we have used dexcom with our daughter – didn’t like it

westinsmom says to (10:06):

my son used it for some time (MM) but we can’t afford to pay out of pocket anymore

gina says to (10:06):

Gary can you tell us the benefits of wearing CGM for the people that dont have one

Danny6820 says to (10:06):

yes please…

gina says to (10:06):

and want to know about it

Judy&Alli says to (10:06):

my dd has dexcom and loves it

bjphilly says to (10:07):

I’ve worn the dexcom

Gary Scheiner, CDE says to (10:07):

Benefits of CGM… that’s a lot to talk about! Preventing lows, spending less time high, improving sports performance, fine-tuning doses, etc, etc, etc!

bjphilly says to (10:07):

Hey Allison!

AMBlass says to (10:07):

Good evening, folks!

Sophia says to (10:07):

what are some of the bumps in the road people should expect with a CGM?

Gary Scheiner, CDE says to (10:08):

Stark, did you use the Seven Plus or the Seven? There’s a pretty big difference in terms of accuracy & reliability.

stark says to (10:08):

seven

gina says to (10:08):

gary do you recommend any one over the other? Which one do you use?

bjphilly says to (10:08):

what’s the difference Gary?

lee4031 says to (10:09):

My 12 year old hates to wewar her CGM – it is integrated with her Minimed pump, she just does not like the extra site. Currently, we make her wear it for sleep overs, but I don’t like forcing it down her throat…any ideas?

Gary Scheiner, CDE says to (10:09):

I use the Dexcom Seven Plus personally. With all the sports I play, the sensor holds on great and doesn’t get in the way at all. Navigator is a good accurate system too; has better on-screen graphics, but the sensor/transmitter are a bit large for me.

akoster says to (10:10):

Thats one of my big reservations about getting th CGM- the extra site

landileigh says (10:10):

i thought the Navigators were about the size of the omnipod, and it’s size is what discouraged me

westinsmom says to (10:10):

lee, that is another reason we don’t use it anymore. (I have a few in the fridge for emergencies)…it was just not appreciated by the 12 year old

gina says to (10:11):

I wore the navigator and the Minimed at the same time for a trial. I really liked the nav but it was very large

landileigh says (10:11):

what kind of patients do you recommend use the CGM?

Gary Scheiner, CDE says to (10:11):

Maybe your daughter would like having her blood sugar tested less if she wears the sensor. If it is working well, you should be able to cut back to 3 or 4 fingersticks daily.

digammo says to (10:12):

After 4 years, my 13-year old daughter just doesn’t understand the dangers of being high..so an extra site is a hard sell

westinsmom says to (10:12):

Gary, my son never wanted to rely on the readings and continued to check his sugar whenever he felt low

lee4031 says to (10:12):

We tried that reason with her, but she doesn’t mind testing, so it isn’t a big enough reason to convince her.

Gary Scheiner, CDE says to (10:12):

Landileigh, I recommend CGM to anyone with type-1 who wants better control, particularly those trying to avoid lows.

stacey says to (10:12):

My son, almost 18 wears the Navigator…. has had it for 1.5 years and loves it because I don’t have to nag him to check…:) He’s become very dependant on it.

westinsmom says to (10:12):

I should add, he usually wasn’t low when he checked

stark says to (10:13):

Does the Seven plus have a smaller sensor/transmitter than the seven? Does the sensor work better? We had a horrible time getting our 10 year old to go with the extra site & then the sensor wouldn’t last more than a day or so. It wasn’t accurate either

Gary Scheiner, CDE says to (10:14):

Westinsmom – CGM data is not always reliable, but it usually is… particularly if the last couple of calibrations have been close to what the sensor is showing.

gina says to (10:14):

Stark, a trick i learned is if you let the sensor soak in the skin for a whole day before turning it on the readings become really accurate

westinsmom says to (10:15):

I felt very comfortable with the cgms data. I could tell when it was working well and when it wasn’t…Westin just never got comfortable with it and he never paid attention to the alarms…I loved it at night but once I stopped using it and adjusted

stacey says to (10:15):

The only drawback to the Nav for us is that 10 hr calibration… hopefully the newer version will be out soon. We’ve found that its pretty darn accurate bwtween 80-300… over 300 he checks… and he hasnt had too many lows …

westinsmom says to (10:15):

to not having it, I don’t miss it too much.

Gary Scheiner, CDE says to (10:15):

Stark – the Seven Plus uses the same sensors, but the transmitter works much more efficiently. The hones to the calibrations immediately, and programming is much easier, with more customization options.

stacey says to (10:16):

Gary- do you have any clue wjhen the new Navigator will be available??

pethridge@its.jnj.com says to (10:16):

Gary – how do you feel about using the CGM for behavior modification – What i mean by that – if you know what you are about to eat and you bolus ahead of time so you don’t have the big spike

Gary Scheiner, CDE says to (10:17):

All 3 CGM manufacturers/systems have their pros & cons. I have a nice set of “real” comparisons at my website: www.integrateddiabetes.com; just click in the CGMS section.

Judy&Alli says to (10:17):

Gary do you have any idea when integration will happen with Dexcom and Animas?

landileigh says (10:18):

btw, this chat will be transcribed after it is over and up by tomorrow on this website! so if you miss anything Gary has talked about or a website he posts, you can catch it there!

gina says to (10:18):

Here is the direct link to Gary’s CGM page: http://www.integrateddiabetes.com/cg_home.shtml

Gary Scheiner, CDE says to (10:18):

Judy – I wish I knew. They have a national sales meeting next week, and new products usually follow those meetings. Hard to say for sure though.

Gary Scheiner, CDE says to (10:18):

Gina, you are TOO quick.

gina says to (10:18):

:)

Judy&Alli says to (10:18):

ok thanks I was hoping you would have the inside scoop;)

art says to (10:19):

I use the Dexcom Seven but can’t get insurance coverage yet. Any advice on how to get them to approve it? I also find that the Dexcom is accurate when my blood sugars are stable and do not fluctuate a lot.

PowerPumper says to (10:19):

insurance is my hurdle too

Gary Scheiner, CDE says to (10:19):

Looks like the updated Navigator system will have a shorter warmup time, longer alarm shut-off options, and a few other programming advances. BUT, the sensor/transmitter will be the same size.

Gary Scheiner, CDE says to (10:20):

Art – My website also has details about securing insurance coverage. You have to be persistent… it will often be denied at first, so you have to keep appealing until they agree.

gina says to (10:20):

to be honest i think the longer calibrations make it more accurate

Wendy12571 says to (10:20):

I don’t have insurance coverage for the seven plus either, but also bolus off of it. ops don’t tell the FDA

westinsmom says to (10:20):

any tips on Medicaid?

gina says to (10:21):

I have tips at my other website on how to help people get covered for CGM as well: http://cgm-antidenial.ning.com/

Judy&Alli says to (10:21):

Michelle in Ohio they don’t even have a billing code for cgm’s.

Gary Scheiner, CDE says to (10:21):

I bolus off mine sometimes too, Wendy. But if my BG is rising or falling rapidly, I’ll do a fingerstick since there can be a substantial difference at that moment in time. If the BG is stable, it will be more precise.

art says to (10:21):

Thanks, Gary. I have been told that if your physcian indicates that you have hypogycemic unawareness (which I do), you have a better chance of getting it approved upon appeal.

westinsmom says to (10:22):

when we were on MIChild (which is for low income in MI but run through blue cross) we got reimbursement, surprisingly…but I have ot even tried to with straight Medicaid

stacey says to (10:22):

Jesse bolus’s off of it too.. because he’s a teen……….. and doesnt check

Gary Scheiner, CDE says to (10:22):

No specific Medicaid tips because coverage and terms vary from state to state. Medicare will absolutely not cover anything at this point.

lee4031 says to (10:23):

Gary, have you seen a significant drop in A1C’s in teens and young adults from using the CGMS?

stacey says to (10:23):

I got Jesse’s covered by GHI in NY… by calling and harassing them daily for 6 days… and on the 7th day he was approved.

Gary Scheiner, CDE says to (10:23):

That’s true, Art. Hypo unawareness is one of those “red flags” that insurance companies don’t want to mess with. That should be stated in your doctor’s letter of medical need.

Judy&Alli says to (10:24):

Gary do you find a 20 minute lag on the dexcom when coming up from a low?

Gary Scheiner, CDE says to (10:25):

Lee – My practice experience, and the recent JDRF-sponsored studies, show that young people who use the system on an regular basis and view the data regularly experience improvements in control.

gina says to (10:25):

i found that i have much better blood sugars when I am on the cgm and i like that i know what is going on

PowerPumper says to (10:25):

Gary, I have sites I don’t use anymore for insulin. After 34 years they just don’t work well anymore. Will these sites work ok for a CGM sensor?

DiabeticDiva says to (10:25):

Hey all

westinsmom says to (10:25):

Lee, Westin’s a1c dropped by almost a point and stayed there for a good year without using the cgms..now it popped back up.

Gary Scheiner, CDE says to (10:26):

That means: wearing the sensor just about all the time (not once a month or every other week), and viewing the data hourly or more to detect and fix/prevent potential problems. Those who don’t do these things don’t improve their control.

Gary Scheiner, CDE says to (10:26):

Way to go Stacey! Your experience sounds almost biblical.

lee4031 says to (10:26):

Is that reallt realistic for young adults in school? At what age is that an appropriate response?

randombetic says to (10:26):

I’m currently using an Animas Ping Pump. Any thoughts on their newly announced CGM system, and what to do in the meantime?

gina says to (10:27):

Gary, I would wear it all the time but, the alarms make me crazy any tips?

Gary Scheiner, CDE says to (10:28):

Judy – yes, there seems to be a substantial lag with all the systems during recover from a low. I believe it is caused by shifts in blood flow when the body is in a stressed state: very little new blood flow to the skin surface.

Gary Scheiner, CDE says to (10:29):

Power – all you can do is try. It might work fine, as long as there is reasonable blood flow to the area. Sensors seem far less affected by site selection than infusion sets.

Gary Scheiner, CDE says to (10:31):

random – when Animas updates their pump to link with Dexcom, it will use the current Dexcom sensors/transmitters, so it makes sense to get started on the sensor part now. When the new pump comes out, you’ll be ready to rock & roll.

art says to (10:31):

I am a triathlete and attended the Diabetes Training Camp last year with Team Triabetes. (Awesome program!) I was amazed at how many athletes now use CGMs when training. Only problem is that sweat tends to make it more inaccurate. Any advice?

Gary Scheiner, CDE says to (10:31):

Gina – which system do you use? There are ways to minimize the alarms.

gina says to (10:31):

MM

randombetic says to (10:31):

thanks Gary!

gina says to (10:32):

i minimize them but, it pretty much defeats the purpose of wearing it

DForce says to (10:32):

I have been wearing my CGM consistently since April, 2007, no days off. I love it, however I find that every few months, it gets crazy and say I’m 50 when I am in the 100s or I am 300 when I am in the 100s. I am an RN, CDE, CGM trainer, very experienced

DForce says to (10:32):

Any idea why this happens? Not a calibration issue…

gina says to (10:32):

Dforce that is awesome

Gary Scheiner, CDE says to (10:33):

Medtronic’s sensor gets a bit more cranky than the others. You can start by raising your high threshold and lowering your low threshold, and using a long snooze time for both. But there isn’t much you can do about cal errors.

PowerPumper says to (10:33):

I’ve not pushed for one yet because my control is pretty good. I’ve a 5.9% A1C and 16 basal rate changes. I’ve done lots of basal testing and meal profiling. But I am wishing I had some hypo protection. My hypo-sensitivity is pretty low.

PowerPumper says to (10:34):

My MM rep (at a session) said to insert sensors at 90 degrees, not 60. Also to calibrate less often.

Gary Scheiner, CDE says to (10:34):

Art- sweat should not affect accuracy, but it can affect the stability of the sensor/transmitter, which can cause error messages. Extra tape, careful placement (buttock works well), and use of Mastisol might help.

stacey says to (10:34):

Jesse’a A1C hovered around 6,8-7.1 for the first year of use… never really dropped.. BUT – we;ve just about eliminated the lows and highs… He had 78% of his readings betwn 80-175. His A1C last month was 6.5…..I’m pretty sure that puberty has ended

stark says to (10:34):

Dexcom’s sensor’s expire within a few months time. Can you still use them after the expiration date? Are they still accurate?

sstrumello says to (10:35):

Gary, have you thought about writing a CGMS book?!?!

gina says to (10:35):

that would be amazing!! WRite a book Gary!

stacey says to (10:35):

yeah !!

art says to (10:35):

Thanks, Gary! Great advice. Also did not know you could insert Dexcom sensor in back or buttocks!

Gary Scheiner, CDE says to (10:35):

DForce – I think you just have to expect an occasional problem. What the companies call “user error” I call “crappy sensor”.

Wendy12571 says to (10:36):

stark, i have been know to use expired sensors.

gina says to (10:36):

Art, I find that the arm is really accurate. Well, for me anyway

gina says to (10:36):

Gary LOL

gina says to (10:36):

Wendy, bad girl lol

Gary Scheiner, CDE says to (10:37):

Powerpumper – you could probably maintain a tight A1c but without nearly as many lows if you were using a sensor consistently and properly.

sstrumello says to (10:37):

I’m serious about a book; it would be helpful for anyone shopping for one, or trying to fine-tune one!

DForce says to (10:37):

Crappy in what way? The sensor itself has a problem?

Judy&Alli says to (10:37):

My daughter uses her arm for her sensors too. When the pad gets loose she uses sports wrap instead of tape and it works awesome!

art says to (10:38):

Gina…the arm works well for the transmitter (or the sensor)?

Gary Scheiner, CDE says to (10:38):

Congrats Stacey! That % in-range is my favorite statistic. THAT is what it’s all about.

gina says to (10:38):

Art, sensor

art says to (10:38):

Really! Didn’t know you could insert it there either!

sstrumello says to (10:38):

Its an almost unaddressed area in publishing

Gary Scheiner, CDE says to (10:38):

Stark – you should be able to use the Dexcom sensors a little after the expiration date; but if your first couple of calibrations are way off, I’d chuck it and start with a fresher one.

PowerPumper says to (10:38):

I have my lows pretty minimal. I really do understand my behavior. I’ve put a lot of work into it. But when I do go low, well, the lights might be on but nobody’s home :(

gina says to (10:39):

you can insert anywhere you take shots

gina says to (10:39):

powerpumper i hear you on that lol

stark says to (10:39):

Can you get free replacements for “crappy sensors” that cost a lot of money? In your experience can you get Dexcom to replace faulty ones? We were unsuccessful.

gina says to (10:40):

when i have problems with my Mininmed sensors i am able to call the hotline and get replacements

art says to (10:40):

Gina, I have only inserted it in the abdomen as they recommend. I get lots of bruises there, so it it great to know there are options. Thanks so much. ::)

Gary Scheiner, CDE says to (10:40):

Thanks for the vote of confidence, sstrumello. Maybe one of the sensor companies would hire me to write one.

gina says to (10:41):

Art, i use my side up in the ribs a lot too i get good readings there too

stacey says to (10:41):

jesse wears it on his left arm, in the same spot .. it drives me nuts… but at least he wears it. In the summer, he had a white rectangle on his tanned body…

landileigh says (10:41):

lol stacey! D-tans!

Gary Scheiner, CDE says to (10:42):

Stark – Absolutely… if your sensor poops out well short of its intended life, call the company. They will almost always replace it for you.

Gary Scheiner, CDE says to (10:42):

everyone — how much time do you get from your sensors? (and which system do you use?)

lee4031 says to (10:43):

We get 6 days, with a restart inbetween with our MM…

gina says to (10:43):

Stacey, that is funny happens to me all summer!

AMBlass says to (10:43):

I’m on the Minimed and I don’t wear it past 6 days. Not because the sensor is bad, but because I get infections. :(

Judy&Alli says to (10:43):

we use dexcom 7 plus. we get about 9 days typically:)

DForce says to (10:43):

Medtronic-6 1/2 days, although I have pulled off transmitter, popped in charger and reattached to old sensor for another 6 days!

gina says to (10:43):

Gary, I can get 7 days of use with Minimed

art says to (10:43):

I sometimes get about two weeks on my Dexcom sensors but they start to get erratic after about 12 days.

gina says to (10:43):

sometimes 9

Gary Scheiner, CDE says to (10:43):

Does everyone on the Medtronic know the trick for getting past 6.5 days?

AMBlass says to (10:44):

I don’t but even if I did – ouchy skin.

Gary Scheiner, CDE says to (10:44):

DForce just spilled the beans!

stark says to (10:44):

I guess we haven’t had much success with the this at all. . . we never got more than 1-2 days from Dexcom seven . . .uuggh!

gina says to (10:44):

Gary no ?

gina says to (10:44):

i did read Dforce that is a good idea

DForce says to (10:44):

If you train for the company, you better know the tricks!

stacey says to (10:44):

Navigator. 8-10 days… Then it usually falls off of his slimy skin… I have 100% coverage, and have a good supply ..

art says to (10:44):

Dexcom should certainly last for 7 days!

Judy&Alli says to (10:44):

1-2 days is unacceptable stark. I am sorry for you!

gina says to (10:44):

stacey you are lucky

sstrumello says to (10:44):

This seems to suggest why JDRF partnered with Dexcom, rather than Medtronic Minimed

Gary Scheiner, CDE says to (10:45):

After 6 days on the MM sensor, you have to remove the transmitter and charge it for 20 minutes, then plug it back in and do a fresh sensor start.

stark says to (10:45):

thanks Judy & Alli!

lee4031 says to (10:45):

After the 3rd restar, 6 days, how long does it stay accurate?

Gary Scheiner, CDE says to (10:45):

I like that, Allison. “Ouchy Skin”.

gina says to (10:45):

oh Speaking of the JDRF we will be having an Artificial Pancreas chat with Aaron Kowalski soon as well

Judy&Alli says to (10:46):

I hope dexcom replaces them for you stark!

gina says to (10:46):

GAry, how many more days can you get out of it then?

DForce says to (10:46):

Another tip. On day 3, enter a bg BEFORE going to “new sensor”. Then sensor will use CAL you just entered rather than having to wait a minute or 2 before entering it.

AMBlass says to (10:46):

Heh. Cute names don’t make it any painless. I don’t know how people can have something in their skin that long! Am I doing something wrong?

Gary Scheiner, CDE says to (10:46):

Beautifully descriptive, Stacey. What exactly does his “slimy skin” smell like? No… I don’t want to know.

PowerPumper says to (10:46):

Do you kno if this new JDRF/BD relationship will examine sensor improvement?

sstrumello says to (10:46):

Thanks Gary, Gina … I’ve got to cut out early now. I look forward to reading the transcript!

gina says to (10:47):

Scott see ya soon!

Gary Scheiner, CDE says to (10:48):

Yea, cute names just don’t cut it. Like infusion sets: “Sof Set”, “Silhouette”, “Tender”, “Comfort”. We need real names, like HARPOONATRON or BLUDGERMATIC.

gina says to (10:48):

LOL

PowerPumper says to (10:48):

lol

Judy&Alli says to (10:48):

lol gary

bjphilly says to (10:48):

lol

DForce says to (10:48):

I have gotten 12 days out of mine, however that was when my insurance wasn’t covering and I was desperate!

Gary Scheiner, CDE says to (10:49):

Most people I work with can get close to 2 “cycles” out of their sensors before the performance starts to croak.

gina says to (10:49):

wow!!!

DForce says to (10:49):

2 cycles of 6 days or 2 cycles of 3?

Judy&Alli says to (10:49):

can you go 14 days gary?

Gary Scheiner, CDE says to (10:50):

5-6 days w/Medtronic, 8-10 days w/Navigator, 12-14 days w/Dexcom.

Judy&Alli says to (10:51):

wow i think our record was 12 days. But she is so active they usually come out before they stop working.

DForce says to (10:51):

Do you find one brand more accurate than another? Which would you recommend to a new pt. with no preference?

Gary Scheiner, CDE says to (10:52):

I pay cash for my Dexcom sensors, so I put them on life support and do a few resuscitations before I rip it out.

AMBlass says to (10:52):

I definitely think I’m going to switch to DexCom once my supply of Minimed is done.

gina says to (10:52):

Gary that just made me laugh out loud

Gary Scheiner, CDE says to (10:52):

Usually get 15-18 days out of my dexcom sensors… also need to apply some extra tape around day 10.

art says to (10:52):

Gary…I am with you! When you have to pay out of pocket, you make them last!

PowerPumper says to (10:52):

ido cgms have to be matched to pumps — will only MM’s work with my MM722?

landileigh says (10:53):

Don’t forget everyone that you can check out Gary’s website at http://www.integrateddiabetes.com/

Gary Scheiner, CDE says to (10:53):

HERE’S THE RECORD FOR SENSOR LONGEVITY, at least from what I’ve seen. One of the dietitians in my office got 52 FREAKIN’ DAYS out of a single Navigator sensor. We framed the sensor and have it hanging on the wall.

:) says to (10:53):

I am up for a new pump…if I were to go with Medtronic, do people still recommend the Dexcom? Cons of Medtronic vs. Dexcom( aside from it being a stand alone device of course)?

gina says to (10:54):

WHAT!!!

landileigh says (10:54):

and of course the book that everyone must have “Think Like a Pancreas” written by Gary Scheiner will be linked off of this chat’s transcript

Judy&Alli says to (10:54):

52 days? OMG!!!

stacey says to (10:54):

52 days… thats scary- how did they get ot to stick so long…?

Ellen1456 says to (10:54):

Well my son can’t seem to get it not to itch after 4 days.

DForce says to (10:54):

52 days? And how was the surgery to remove it?

Gary Scheiner, CDE says to (10:54):

PowerPumper – CGM does NOT have to matched to a pump. I have patients on Medtronic pumps who use other types of sensors, and people on different pumps who use a Guardian system.

AMBlass says to (10:55):

Ellen, I am the same way.

PowerPumper says to (10:55):

cool, thanks

gina says to (10:55):

mine itches too

DForce says to (10:56):

Do not scratch it!! It is like poison ivy..once you scratch, you can’t stop! I find generally the itch goes away.

Gary Scheiner, CDE says to (10:56):

Thanks for the promo, Landileigh. FYI, my practice provides diabetes consulting via phone & internet all over the world, so if anyone is looking for some “coaching”, please let me know.

gina says to (10:56):

dforce i cant stop itching

gina says to (10:56):

LOL

Sophia says to (10:56):

I like your new website design, Gary. It looks good.

art says to (10:56):

I wish Dexcom would make the adhesive bandages flesh colored (beige or brown) instead of white. The transmitter is small but the bandage stands out like a billboard! Anyone else agree?

gina says to (10:57):

me too gary your new site looks really good! http://www.integrateddiabetes.com/

Judy&Alli says to (10:57):

i might be interested in some counseling for my 11 year old gary.

Ellen1456 says to (10:57):

Seriously, for the person who got so many days out of that Nav – what prep did they use? How many times did they have to retape it?

lee4031 says to (10:57):

Does insurance typically cover the cost?

lee4031 says to (10:57):

Of your counseling that is…

Judy&Alli says to (10:58):

good ? lee

Gary Scheiner, CDE says to (10:58):

Thanks Sophia. It just went up about 4 hours ago. Sorry there are still some “blank” pages.

landileigh says (10:58):

Everyone, it’s almost time for our chat to end tonight, Gary can take just a couple more questions.

gina says to (10:58):

Gary, I have been trying to get my a1c into “baby range” and it has been horrible

Gary Scheiner, CDE says to (10:59):

Art – at least the transmitter is no longer BlacK. fIRST time I wore it, my wife thought I had a bug on me.

gina says to (10:59):

i am about to give up how can i use my cgm to help me get there

gina says to (10:59):

any tips?

Gary Scheiner, CDE says to (10:59):

Lots of tape, Ellen. Lots and lots and lots of tape.

DForce says to (11:00):

Gina…just had baby #3 12 weeks ago. All normal weights, all overdue. This one was 3 weeks overdue! Doctor almost had a nervous breakdown but I refused induction/c section. There is hope..

Ellen1456 says to (11:00):

What kind of tape? Any antihistamine or barrier wipes to prepare the skin?

landileigh says (11:00):

Optiflex, I bet

landileigh says (11:00):

stuff is awesome

Gary Scheiner, CDE says to (11:00):

Lee – Our clients all pay us directly and then submit for reimbursement. Some get reimbursed, some don’t. But we get people the results they want, so they keep coming back!

lee4031 says to (11:00):

Thanks Gary – good to know!

art says to (11:01):

LOL! It does look like a big roach!

Gary Scheiner, CDE says to (11:01):

Gina – best thing you can do is set your high alert aggressively (160? 180?) and attack the high as soon as the alerts go off. If you spend very little time in the high ranges, your A1c will defintely come down.

Judy&Alli says to (11:01):

Goodnight all!! Thanks Gary!!

stacey says to (11:01):

gotta go, goodnight all (Tp)

gina says to (11:02):

Don’t forget to check out Gary’s website http://www.integrateddiabetes.com/

Gary Scheiner, CDE says to (11:02):

Thanks for having my on the “show”. This has been a lot of fun.

landileigh says (11:02):

Thank you everyone for coming! The Chat transcript will be up tomorrow.

DForce says to (11:02):

Try “mini bolusing”..as soon as you see bg creeping up into 130s, test and take 0.2…works for me!

art says to (11:02):

This has been great! Thanks!

Ellen1456 says to (11:02):

The new website looks good Gary.. Thanks for taking the time to chat.

Sophia says to (11:02):

Thanks Gary and thanks Gina – for all the great work you do!

AMBlass says to (11:02):

Thanks again Gary

gina says to (11:03):

Gary thank you so much for being a guest!

landileigh says (11:03):

Also, All of the links that Gary has mentioned will be listed with the chat

Ellen1456 says to (11:03):

Looking forward to reading the transcript – I arrived late.

Ellen1456 says to (11:04):

Thank you TDR!


Posted in CGMS, Past Chat Transcripts | No Comments »

Review of a decade

January 4th, 2010

At work we have something called the daily download, where we have some fun before heading out to meet customers. I had to work on New Year’s Day and our manager wanted to know what our most reflective moment was over the past decade.

I was the 3rd person to go and didn’t really have much time to think about it. So, quickly blurted out I got married. Everyone clapped, and on to the next person we went.

But, as I was thinking about it more and more as everyone went, I thought to myself holy cow. I have had such a crazy decade.

2000- a little after my 25th birthday I had a life changing event. I diagnosed with type 1 diabetes.

2001 - The city of New York was hit by the worst terror attack since Pearl Harbor.

2002 - I started a new job at a parenting publication.

2003 – Another life changing event. I was hit by a speeding car crossing the street. BTW, It was the first time I was ever in a cast.

2004 – Started dating the best man in the whole world!

2005 – Had a really tough time with my diabetes management.

2006 – Got engaged.

2007 – Planned my wedding. It isn’t as stressful as people say it is.

2008 – Had the best bridal shower in February thrown by my sis and mom, and Got married April 18, at an actual castle, to my best friend. Got a freelance job working for the JDRF, Started my own company after getting laid off twice in one year.

2009 – Learned how to be a business owner. Got to meet people of the DOC, traveled to the Roche Summit, went to Miami to a mastering your diabetes class, Traveled to Europe for the first time, as well as Las Vegas, Indiana, and California.

When I thought about the last 10 years as a whole, these are things from each year that stood out to me. So, what I think is that you only have one life to live, make the best of it. Live every day as if it was your last!

HAPPY NEW YEAR EVERYONE!!

~gina

Posted in Gina's Ramblings | No Comments »

Reflections on 2009 by Landileigh (VP of TDR)

December 30th, 2009

I could talk about the suckiness of 2009 and tell you about my family’s unemployment, or my a1c rising 2 points, or so many other sucky things. But, i intend to talk about the successes of 2009

1. The Diabetes Resource launched after a year and a half of planning and working on it. It has turned out better than we ever hoped.
2. I met so many new people thanks to The Diabetes OC.
3. Gina came out to the West Coast and we spent a fabulous day in San Francisco.
4. My husband and I became closer, and knew that the words “for better or worse” really does come in effect at times.
5. I learned how to feed my family on $200/month. Thanks to my grandmother for teaching me how to cook from scratch and how to can goods.
6. My cooking got better. I still can’t make fried chicken, but I can now make gravy after trying for 30 years.
7. My cats, ages 15 and 14 are in excellent health.
8. My daughter started culinary classes in Baking and Pastry and is on her way to be a Chocolatier. Her dream.
9. I became a better writer, and can review with the best of them.
10. I learned I can take a bus just about anywhere in the town I live in.
11. I’ve gotten my teeth worked on, and they are almost perfect again, and I feel like I can smile now.
12. Family get togethers are more important as we are happy to be together.
13. Finally got an answer for my hives. Cholergenic Uticaria. I’m allergic to my body temperature. But at least having an answer means I can control it.
14. Although I have diabetes and Chronic Kidney disease, I am alive and optimistic, and I am running my life, not them.
14. That 2010 has to be better!

I wish you joy and happiness in this New Year. Optimism is the key. Don’t let diabetes or anything get you down. WE make lemonade out of lemons. Keep a smile in your heart, and it can’t help but reach your face for you to share it!

love you all!

landileigh

Tags:
Posted in Landileigh's Blog | No Comments »

Diabetes and Depression Chat with Dr. Wendy Rapaport 12/09/09

December 10th, 2009

wendy*** (09:41):Welcome to Diabetes and Depression!

dr wendy rapaport says to  (09:59):
good evening..80 degrees in Florida..care to brag about your weather

dr wendy rapaport says to  (09:59):
that was not meant to sound hostile!

gina says to  (09:59):
cold and raining here in NY

landileigh says (09:59):
i’m 45 mins north of san francisco

pinkdolphin says to  (10:00):
hot here in sydney australia

landileigh says (10:00):
and it will be below 20 for record freezing weather again tonight

landileigh says (10:00):
with snow

akoster says to  (10:00):
warm in new orleans

dr wendy rapaport says to  (10:00):
well I love how international we all are

dr wendy rapaport says to  (10:00):
and so the subject is how to stay warm in our hearts and minds, regardless of the weather

Ellen2110 says to  (10:01):
Especially this time of year

landileigh says (10:01):
awesome

dr wendy rapaport says to  (10:02):
yes, this time of year has high expectations on our behaviors and what we expect from others..sometimes that’s a set up

gina says to  (10:02):
Hi everyone welcome to diabetes and depression

bjphilly says to  (10:02):
evening everyone

dr wendy rapaport says to  (10:03):
that does sound funny..”welcome to depression”..au contraire..we need to recognize and fight it

dr wendy rapaport says to  (10:04):
heard you did a terriffic Job at Diabetes 2.0 Gina..

gina says to  (10:04):
I guess that sounded weird lol

gina says to  (10:04):
The floor is open to questions for Dr. W

gina says to  (10:04):
ask away

dr wendy rapaport says to  (10:04):
I want to start and end with this thought: Depression is treatable!

gina says to  (10:05):
Wendy agreed.

jchesen says to  (10:05):
Good evening everyone

gina says to  (10:05):
I have been battling depression since diagnosis

gina says to  (10:05):
9 yrs

dr wendy rapaport says to  (10:05):
It’s treatable with exercise, changing food habits, improved diabetes control (of course!) changing your thoughts, and occasionally medication

dr wendy rapaport says to  (10:06):
she didn’t pay her dues?

gina says to  (10:06):
lol

dr wendy rapaport says to  (10:06):
it is important not to compromise yoursself and expect to “live” with depression..rather than use the tools

gina says to  (10:07):
i used to just live with it

gina says to  (10:07):
until some friends told me i didnt have to

Stephanie9571 says to  (10:07):
Sometimes it’s almost as if depression because comfortable..

dr wendy rapaport says to  (10:07):
yes, important not to think of it as your destiny

dr wendy rapaport says to  (10:07):
what do you mean comfortable? did it get you out of obligations, keep you close to home

jchesen says to  (10:07):
I used to think it was inevitable

jchesen says to  (10:08):
expected

Stephanie9571 says to  (10:09):
As in.. A comfortable state of being, when you don’t really know or remember what it’s like to be “happy” I feel like folding into oneself and surrounding yourself with that sadness becomes a normal state of being for you, and you’re almost scared to be

Stephanie9571 says to  (10:09):
any other way..

dr wendy rapaport says to  (10:09):
It certainly isn’t inevitable..depressed feelings are dark thoughts..and everyone has them..especially if you have the full time job of taking care of diabetes..but it is different than the “state of depression”

pinkdolphin says to  (10:09):
I have been battling with depression since i found out i have diabetes 3 years ago i am now 29 . I was on the pill and at first thought it was the pill making me depressed but since stopping the pill  i feel the same.

akoster says to  (10:10):
im a perfectionist and when my levels are out of range It feels like I can never pull myself out of depressive thoughts. Like I can never relax and just live

jchesen says to  (10:10):
I used to think it was hormonal too……now I really don’t know. And my Diabetes control is better too….but still

gina says to  (10:10):
akoster, i feel the same exact way

dr wendy rapaport says to  (10:10):
remember that fluctuating or out of control blood sugars contributes to depression..look around at your family history to see if there is depression running in your family
Stephanie9571 says to  (10:10):
Those feelings are what lead me to define myself as “being in a state of depression.” I am in a much better place now than I was even just a few months ago, with diet change and exercise, but there are still some bad days when it almost feels tempting to
Stephanie9571 says to  (10:10):
“give up” and go back to that thought process which I’ve come to know so well.
gina says to  (10:10):
depression doesnt run in my family
jchesen says to  (10:11):
My standard comment to fluctuating (daily) BS is “I just can’t win”
dr wendy rapaport says to  (10:11):
when you say hormonal..do you mean when you are getting period
Stephanie9571 says to  (10:11):
I find that when I’m eating a lot of high and refined carb foods my moods fluctuate a looot more
gina says to  (10:11):
the worst is when you try and try but, it feels like you are failing
jchesen says to  (10:11):
Wendy: yes at times
akoster says to  (10:12):
I put a lot of care into my diabetes care . . . my endo says that mine is one of the difficult ones to manage than others. Its putting in all that effort and getting nothing out. I agree with gina
gina says to  (10:12):
or the numbers flucuate so much that it drives you mad and then you dont want to check
jchesen says to  (10:12):
EXACTLY gina…..I go to the gym 4-5 times a week and my BS always plummets no matter how low I put the pump
dr wendy rapaport says to  (10:12):
cognitive therapy is about changing those thoughts…your first reaction can be “I just cant win” but you must challenge that thought with..it’s just a number..I need to change the pattern and change my thoughts..I am a good person who is having a lousy da
Stephanie9571 says to  (10:12):
During the worst of my depression I would experience what I’d refer to as “false alarms” feeling wonderfully emotionally one day, and crummy the next with no real explanation
landileigh says (10:12):
I had an a1c that was 2 points higher than I’d ever had and the fear of failure and that I unable to deal with this like i should depresses me
jchesen says to  (10:13):
Hard to have a good day when it starts with a 49
Stephanie9571 says to  (10:13):
I feel like there’s a lot to deal with diabetes, it’s almost like facing your mortality on a daily basis
akoster says to  (10:13):
I know, bad morning levels are hard to recover from emotionally
dr wendy rapaport says to  (10:13):
well gina if the blood sugar plummets while exercising.. that is great..it is doing the job…but add abit of food or some people suspend the pump
Stephanie9571 says to  (10:13):
What is your take on medication? I have always been against medication for depression, fearing dependency..
jchesen says to  (10:14):
I think the golf term is wanting a mulligan
dr wendy rapaport says to  (10:14):
I can hear a lot of thought changing needed…you listened to people who scared you and shamed you (they didn’t know better)
jchesen says to  (10:14):
Wendy: I put the pump to 1/2 basal when I exercise…..Is it safe to suspend for an hour?
dr wendy rapaport says to  (10:15):
I think medication is a great help and just sometimes biochemically necessary
Ellen2110 says to  (10:15):
Hi Beth
gina says to  (10:15):
Wendy that was Chesen not me.
sisterbeth says to  (10:15):
Hi everyone
bjphilly says to  (10:15):
hi
jchesen says to  (10:15):
Call me Jody :)
Stephanie9571 says to  (10:16):
hi!
gina says to  (10:16):
stephanie, my doctors wanted to put me on anti-depressants but I fought my way to not take it although i probably should have
dr wendy rapaport says to  (10:16):
you don’t get dependent on antidepressants (prozac, welbutrin, effexor, cymbalta)…they work or they don’t…you have to be more careful with xanax..which can still be helpful
gina says to  (10:16):
is lexapro addicting?
jchesen says to  (10:16):
I have an extremely addictive personality….Rx would NEVER wor\k for me
bjphilly says to  (10:16):
hey Scott!
dr wendy rapaport says to  (10:17):
gina..what is the fight against antidepressants? (I get it..many people feel that way)..but you don’t resist insulin or do you
Stephanie9571 says to  (10:17):
It has always been recommended to me as well but I’m constantly searching for alternative routes,
akoster says to  (10:17):
I think that it has been hard for me to hear for all these years that if I dont have tight control I am going to get horrible compliactions and die. – for me medication was necessary . . . Im on zoloft
sstrumello says to  (10:17):
Hey Betty, everyone … sorry I’m late
gina says to  (10:17):
At the time of my depression I didn’t want to take meds
Fran3040 says to  (10:17):
It’s Fran! Sorry I’m late too!
gina says to  (10:17):
Fran jump right in!
jchesen says to  (10:17):
I feel my best right after I exercise but the endorphins don’t last…..anyway to help that?
dr wendy rapaport says to  (10:18):
addictive personality means you are vulnerable..and maybe even more so need the type of medication that you take everyday..not the kind you want to take when you feel badly
Fran3040 says to  (10:18):
AAHHH!!! I don’t remember how to do this. that is, how to HEAR and be heard! (It’s probably an age thing—mine!)
Stephanie9571 says to  (10:19):
As far as types of depression go.. manic depression/bipolar how could one go about alleviating the symptoms of that- is it any different than the course of treatment for other types?
dr wendy rapaport says to  (10:19):
chesen..learn to change your thoughts about diabetes, life…and your mood will change
gina says to  (10:19):
Wendy, that is what i did
jchesen says to  (10:19):
Hard with the stress of the job….and the disease.
dr wendy rapaport says to  (10:19):
I do think anyone who has diabetes should start a dialogue with a trusted therapist
bjphilly says to  (10:19):
I agree Wendy
jchesen says to  (10:20):
Got me through childhood!
akoster says to  (10:20):
stephanie- bipolar shouldnt be treated with antidepressants- it can trigger a manic episode
bjphilly says to  (10:20):
me too ichesen
dr wendy rapaport says to  (10:20):

therapy to “grieve”..how  to manage the chronicity of everyday

jchesen says to  (10:21):

Group was SUCH a relief as a kid…..looking for something “regular” like that now

pumpergirl says to  (10:21):

this doesn’t necessarily have to do specifically with diabetes and depression but depression in general. is there any thing that says you are more likely to have it if it’s in the family (like a sibling). . .

Stephanie9571 says to  (10:21):

I know this is a chat regarding diabetes and depression, but would you all say that diabetes is the CAUSE of depression, or simply compounds the difficulty of it?

havana16 says to  (10:21):

i have been type 1 diabetic for 35 years   and i learned that there are far worst diseases in this world than diabetes

bjphilly says to  (10:21):

it compounds life

gina says to  (10:21):

i think having diabetes in general and the day to day would make anyone depressed at one time or another

dr wendy rapaport says to  (10:21):

koster…great point..that is why therapy BEFORE meds..so you get the right diagnosis..there are good drugs for bipolar

havana16 says to  (10:22):

so i learnd to be content and deal with what i have

jchesen says to  (10:22):

definitely compounds things…..not the only cause

bjphilly says to  (10:22):

I know there are worse

havana16 says to  (10:22):

the happier one is

havana16 says to  (10:22):

the easier it is to control diabetes

akoster says to  (10:22):

the idea that there are worse doesnt really make diabetes any better

havana16 says to  (10:23):

no

jchesen says to  (10:23):

I like that havana

gina says to  (10:23):

diabetes is chronic

havana16 says to  (10:23):

i know that

Stephanie9571 says to  (10:23):

I’ve thought a lot about this ideal of “there are worse things” and I think that creates for people with disease a sense of guilt when feeling bad about it

gina says to  (10:23):

other disease can go into remission

Jane5198 says to  (10:23):

For someone who is having a difficult day with diabetes to think of someone who is worse off may not be the answer.

gina says to  (10:23):

not saying its better or worse

havana16 says to  (10:23):

but when u think   that diabete  does not have to kill you

havana16 says to  (10:23):

unless u do not control it

dr wendy rapaport says to  (10:23):

false beliefs contribute to depression..as do exaggerated beliefs ( a few days of high blood sugars do notcause complications

gina says to  (10:23):

doctors scare us into all of this

landileigh says (10:24):

I try to be optimistic, but feel that sometimes i just can’t handle all that diabetes and chronic kidney disease throw at me. it’s the never ending “every minute” of diabetes

gina says to  (10:24):

i think that if we were given a pyschologist at time of diagonisis we would all be much better off

jchesen says to  (10:24):

my father was recently diagnosed with T2 and it threw him for a loop even though I’ve had it close to 30 years now…..He has his good and bad days too

Stephanie9571 says to  (10:24):

I think the comparison is a futile one. Every disease is difficult in its own right, to call one “better” or “worse” or less serious than the other is unfair

gina says to  (10:24):

they should be a part of our diabetes care from day 1

bjphilly says to  (10:24):

I don’t know if anyone knows this saying but I heard it as a child “I cried because I had no shoes and then I saw a man who had no feet”

Jane5198 says to  (10:24):

I agree Stephanie.

jchesen says to  (10:24):

I agree Gina

jchesen says to  (10:24):

bj: I’ve heard that one,…..and agree

landileigh says (10:25):

gina, kind of like… you have diabetes – here is your endo, your cde, your nutritionist, and your psychologist

gina says to  (10:25):

exactly

gina says to  (10:25):

i wrote about this on my blog once

dr wendy rapaport says to  (10:25):

here are negative toughts to get rid of //I amdoomed to be unhappy..I will never control my diabetes

gina says to  (10:25):

the missing team member

jchesen says to  (10:25):

It is definitely a team disease

havana16 says to  (10:25):

staying positive is of most importance

dr wendy rapaport says to  (10:25):

they are feelings not truths..not facts

jchesen says to  (10:26):

your heart sometimes rules your mind

bjphilly says to  (10:26):

50 years ago we didn’t have such a health care team as those

Jane5198 says to  (10:26):

this is important havana, but feelings are neither right nor wrong. They just are.

havana16 says to  (10:26):

yes that is true

havana16 says to  (10:26):

i was dx in 1975

bjphilly says to  (10:26):

I was dxed in 1959

havana16 says to  (10:26):

and had the old fashioned needles

dr wendy rapaport says to  (10:26):

staying positive and not freaking out when you don’t feel it…have a session or 2 with your therapist…learn to use your mind to overrule the emotions

havana16 says to  (10:26):

and no glucose monitorring

bjphilly says to  (10:27):

and I was told to not mention it

jchesen says to  (10:27):

1980….and I just saw an article about the original Glucometers

havana16 says to  (10:27):

me too bjphilly

bjphilly says to  (10:27):

we had to bite the bullet

havana16 says to  (10:27):

yep

Jane5198 says to  (10:27):

There  isn’t just this “be happy” it’s a process.

bjphilly says to  (10:27):

those were the dark ages

dr wendy rapaport says to  (10:28):

well  u r using perspective now..which is helpful..getting you to gratitude after feeling reasonable rage that it isn’t fair

gina says to  (10:28):

betty, you are a diabetes all star!

jchesen says to  (10:28):

bj: technology helps now

bjphilly says to  (10:28):

lol

bjphilly says to  (10:28):

I love technology

gina says to  (10:28):

i mean if you are going to get diabetes this is the age to do it. there are a lot of technologies out there now. Although i would rather be cured. This is good till then i guess.

dr wendy rapaport says to  (10:29):

well chesen you are looking at  technology in a positive way..some people are overwhelmed

gina says to  (10:29):

technology can be very overwhelming. especially for the people that have had it for a really long time

akoster says to  (10:29):

im overwhelmed!

gina says to  (10:29):

like my aunt who has had it for like 40 years, she doesn’t want a pump or anything

jchesen says to  (10:29):

If I had only gone on the pump 27 years ago….I’d have been better off…..these past two years have been a comparative breeze

Ellen2110 says to  (10:30):

Maybe for some Gina, but I know a woman who has had type 1 for over 50 years and she has a pump and a cgm

bjphilly says to  (10:30):

I’m 67 and appreciate tech, not just for managing D.

gina says to  (10:30):

im just using an example

dr wendy rapaport says to  (10:30):

you  need to give yourself permission for any difficult or negative feelings..a place to share them..without someone reacting to it (that’s the power of having a  therapist or being in a support group

jchesen says to  (10:30):

In a perfect world there’d be a cure!

gina says to  (10:30):

in a perfect world we wouldnt have disease

jchesen says to  (10:31):

good point gina

sstrumello says to  (10:31):

Our healthcare “system” does little to coordinate care among all the individuals involved with a patient; and there is also the tendency to “blame” diabetes for things that have nothing to do with glycemic control.

dr wendy rapaport says to  (10:31):

well  we are people…differing from each other and then d gets put on you

Ellen2110 says to  (10:31):

How many of you ask for support from your loved ones and friends?  Are you able to ask them for what you need – especially when feeling overwhelmed?

bjphilly says to  (10:31):

so true Scott

gina says to  (10:31):

ellen, i never used to till i hit rock bottom

dr wendy rapaport says to  (10:31):

say more about blame scott

akoster says to  (10:31):

I feel like they just dont quite get it

Jane5198 says to  (10:31):

No Ellen. I find support online.

gina says to  (10:31):

and once i started asking, it felt better

Stephanie9571 says to  (10:32):

i am often unable to reach out for help

Stephanie9571 says to  (10:32):

There’s an issue of feeling “misunderstood” or unable to communicate why I feel the way I do

akoster says to  (10:32):

I feel a lot of blame too

dr wendy rapaport says to  (10:32):

it is up to each of you to ask for the support you need..each of you is different for what you want

bjphilly says to  (10:32):

fraid not

landileigh says (10:32):

ellen, i find they don’t really understand it all and feel more overwhelmed than i do

Stephanie9571 says to  (10:32):

and also guilt for feeling the way I do when objectively there is not much in my life that should make me feel the hopelessness that I have felt in depression

jchesen says to  (10:32):

D is the great equalizer, like death and taxes

jchesen says to  (10:32):

Ellen: I try to talk to my husband, he tries to understand but he is healthy so he can’t really

dr wendy rapaport says to  (10:33):

some peoople want someone to make special foods for you (how thoughtful) and somee are horrified by anyone remembering that you have diabetes

bjphilly says to  (10:33):

too many years I’ve felt isolated, so it’s difficult to express since I was told not to tell…although I did

Stephanie9571 says to  (10:33):

I think that’s the problem.. identifying with someone who does not share the similar feelings, it’s hard to convey that feeling to others

jchesen says to  (10:33):

I have heard from a doctor friend (ex-boyfriend) that I am the healthiest sick person he knows….ironic isn’t it!

Stephanie9571 says to  (10:33):

I do have one friend who has experienced depression who has been invaluable in my support system because I feel as if I can talk to her without trying so hard to explain

gina says to  (10:33):

jchesen, my husband is so supportive and healthy. He checks my blood sugar for me sometimes or helps me prep. its little things that for a second makes me feel better because I didnt have to do it

MelissaBL says to  (10:34):

I isolated myself for many years, thinking that support groups were lame and whiny.  Didn’t realize I needed to talk, too.

akoster says to  (10:34):

I refused to talk abotu diabetes for years

Stephanie9571 says to  (10:34):

it’s the same way as it is with diabetes, talking to other diabetics, there’s this unspoken aspect of the relationship where you just understand the other person since you’ve gone through the same things..

dr wendy rapaport says to  (10:34):

but it is worthwhile totry to explain..it makes it clearer to you

jchesen says to  (10:34):

gina: my husband tries so hard, I don’t blame him, I appreciate his effort….

gina says to  (10:34):

my husband doesnt completely understand everything i go through but he is willing to help me wtih anything

gina says to  (10:35):

even if its just checking so i dont have to especially at times when i dont want to do it

Stephanie9571 says to  (10:35):

I often ahve trouble talking about diabetes to others, too, though.. I hate exposing my flaws and whether it’s valid or not diabetes FEELS like a flaw, a broken piece of me

sstrumello says to  (10:35):

I’ve seen doctors for things unrelated to diabetes (for example, I saw a dematologist for cracked fingertips) and they wanted to talk about glcemic control … my last HbA1c was 5.9

gina says to  (10:35):

stephanie its so true

jchesen says to  (10:35):

I kinda like when people forget I’m diabetic (human first, sick second)

gina says to  (10:35):

scott, what do you tell them

MelissaBL says to  (10:35):

gina:  mine too.  when he hears my cgms beeping and he knows I’m stressed about a high, he’ll silence it so I won’t growl.

dr wendy rapaport says to  (10:35):

yes..being in a room with others  is powerful

gina says to  (10:35):

i would be like dude. I am here for cracked fingers not my diabetes care i have an enod

gina says to  (10:35):

endo

gina says to  (10:36):

melissa me too

gina says to  (10:36):

we have keepers !

akoster says to  (10:36):

I hate that doctors always want to talk about diabtete even if i am there for something unrelated- even the dentist has to give me a lecture

Stephanie9571 says to  (10:36):

It’s definitely difficult to stop the doubts I have when telling people about my diabetes, fears that they’ll somehow think less of me

dr wendy rapaport says to  (10:37):

gina another way to look  at a derm asking you about your diabetes is to say hey I am glad you keep up and r informed about diabetes (that is changing your thought

jchesen says to  (10:37):

My endo referred me to my GP, they are friends so it’s almost always AIC first…..even when I was dxed with Vertigo

sstrumello says to  (10:37):

When I tell them my HbA1c, they usually respond in embarrassment with something about “keep up the good work”

Stephanie9571 says to  (10:37):

recently,  I was unintentionally “outed” when my insulin pump fell out of my pocket in front of my friend.. I think he sensed my fears in response

gina says to  (10:37):

the only doctor i listen to about diabetes besides my endo is my eye doctor

Ellen2110 says to  (10:37):

Do you think others take their cue from you – if you are confident, they will feel more comfortable?

dr wendy rapaport says to  (10:38):

try not to get “lectures”..tell the dentist you love that he is reading his professional journals to educated self about diabetes…”thanks for your interest”..I take good care of myself

Ellen2110 says to  (10:38):

Not to say anyone should pretend to be confident

gina says to  (10:38):

everyone is the diabetes police!

jchesen says to  (10:38):

My eye doctor couldn’t find any sign of D in my eyes on the last visit…..kinda nice

Stephanie9571 says to  (10:38):

I definitely think so. His response to what I told him was to tell me that “this doesn’t define you, you know, is that what you think??  you’re no less of a person because of it”

Stephanie9571 says to  (10:39):

I think sometimes I avoid telling people also because I’m afraid they won’t understand, and that I don’t have the means or the time to explain everything it MEANS to live with diabetes

gina says to  (10:39):

Wendy, we can all use the W.T.F method lol

jchesen says to  (10:39):

sounds good to me gina

dr wendy rapaport says to  (10:39):

aactually Ellen..you can pretend to be confident..it is almost an “affirmation”..I am not perfect..I am capable and I am impressed with all that I do to take caree of myself..not overinvolved with what I don’t do

bjphilly says to  (10:39):

gotta go. nice chatting

jchesen says to  (10:40):

I am outwardly confident and inside full of doubt…..

jchesen says to  (10:41):

I wish the inside and outside matched

dr wendy rapaport says to  (10:41):

if your favorite psychologist uses WTF..it is purposefull..finding humor in the tough (that is cognitive therapy

jchesen says to  (10:41):

sounds like something to try

dr wendy rapaport says to  (10:41):

just keep working on being mentally fit..it needs a workout..new skills..and social support..a ellen says

30ccsteven says to  (10:43):

Question

dr wendy rapaport says to  (10:43):

actually you can try singing to improve your mood (I saw that on GLEE…tv) but it actually works…so do watching funny movies, or trying to think funny

jchesen says to  (10:43):

my singing would clear the room! :)

Ellen2110 says to  (10:44):

As a parent of a person with diabetes, I hope my son can praise his efforts and not solely focus on the numbers.  Checking bg, taking action – is something to feel good about.

Stephanie9571 says to  (10:44):

Well all I’ve gotta go, nice chatting

jchesen says to  (10:44):

same here…..this was VERY helpful……Thanks all!

MelissaBL says to  (10:45):

I spent many many years discouraged when actions didn’t seem to have the desired results.

dr wendy rapaport says to  (10:45):

yes, it’s effort not outcome that alwys needs to be applauded..it starts with parent s helping their kids to thinking  that way..hard to be enlightened,…but it can be LEARNED

cindy elias de koster says to  (10:45):

I’m with Ellen!

akoster says to  (10:45):

I think im in your shoes now melicca

akoster says to  (10:46):

*melissa

dr wendy rapaport says to  (10:46):

when you don’t get the outcome you want..if you are too harsh..you wont retry with new tools and perhaps better outcome

MelissaBL says to  (10:46):

It was hard to be positive and proactive.  I had A1c’s over 10 for the first decade with T1.  Now, after another decade of tech and education, I have a 5.6.

gina says to  (10:46):

melissa that is amazing

cindy elias de koster says to  (10:46):

brava, Melissa!!!

MelissaBL says to  (10:46):

I had to find out what I didn’t know, which was HARD.  Because I am a stubborn, know-it-all.

Ellen2110 says to  (10:47):

5.6 without many lows is quite an accomplishment

gina says to  (10:47):

arent we all? LOL

dr wendy rapaport says to  (10:47):

someone prob “taught” you how to be discouraged..(not out of malice but fear)…Melissa nice turn around

MelissaBL says to  (10:47):

thanks, folks.  gina: lol

dr wendy rapaport says to  (10:47):

stubborn seems to be a complication of diabetes

MelissaBL says to  (10:47):

dr wendy: lol

MelissaBL says to  (10:47):

indeed

akoster says to  (10:48):

i agree. i am so used to assuming people dont actually know what they are talking about with the disease

landileigh says (10:48):

that’s my problem! stubborn

dr wendy rapaport says to  (10:48):

sereiously there are so many asking, rpobing, criticizing looking upset..that people defend themselves with being stubborn not interested..want ing to be the expert..we are the expert of ourselves but friendship and support are crucial (and more fun)

dr wendy rapaport says to  (10:50):

you are not putting people down when YOU  help them…s

MelissaBL says to  (10:50):

good points.  I had an attitude of “well, I’m still alive and I’ve been doing it such-and-such way for this long, so back off”

akoster says to  (10:51):

I feel like I often live in fear of complications

dr wendy rapaport says to  (10:51):

Melissa I do hear that alot.. a normal response…but then LET IT GO.

MelissaBL says to  (10:51):

right.  I didn’t know how much I didn’t know until I stumbled into the online diabetes community.

landileigh says (10:52):

i had chronic kidney disease before ever having diabetes, but now it is progressing faster thanks to the diabetes. i have to wake up positive every day, and sometimes, like today, when it was so cold, it’s easier to not want to deal with it all

MelissaBL says to  (10:52):

akoster: I wish docs didn’t use complications as scare tactics.  We need to be able to face those threats honestly, but with a feeling like we’re empowered to do something about it.

landileigh says (10:52):

but then the online community is there for me

dr wendy rapaport says to  (10:52):

mY HUSBAND  has diabetes..I feel embarassed sometimes that I don’t know something after working with people for 25 years..oops 35 years..lying about my age..but we ALL MISS SOMETHINGS..HAVE BLOCKS

landileigh says (10:52):

and my BFF who knows how i feel

landileigh says (10:53):

does he use the internet and communities?

dr wendy rapaport says to  (10:53):

I agree..it is how complications are presented to you..fear tactics..they just make you afraid not adherent…

akoster says to  (10:54):

i agree

dr wendy rapaport says to  (10:54):

cplications are not inevitable..fear is..and you can control it..voice it..and be empowered by going to a new doctor..getting a consultation, tightening your bs..changing a habit

dr wendy rapaport says to  (10:55):

you will lalways need refresher courses on your attitude..your actions..that is the point about the “chronicity” of diabetes..do it to stay empowered

MelissaBL says to  (10:55):

I agree.  Changing my endo and my ophthalmologist made a huge improvement – both because I found docs who were positive AND because I felt I needed to start off fresh with someone

Ellen2110 says to  (10:56):

Thank you Gina for hosting this chat and thank you Dr. WSR for your time :-) .

sstrumello says to  (10:56):

Thank you Wendy.  Thank you Gina!  Great chat, as always!

dr wendy rapaport says to  (10:56):

being motivated is like being “in recovery”..you need support, new ideas, a team

MelissaBL says to  (10:57):

great thought, dr

dr wendy rapaport says to  (10:57):

It ivery touching to know that you are all there for each other..Iloved seeing you together at the Diabetes research Institute..we will do it again next year..maybe something for the online bloggers that  I would love to joino

dr wendy rapaport says to  (10:58):

thank you all for your openness and good ideas

cindy elias de koster says to  (10:58):

Thank yu for this forum!!

dr wendy rapaport says to  (10:59):

so be proactive..about the emotional and social side of diabetes..

gina says to  (11:00):

thank you so much wendy

dr wendy rapaport says to  (11:00):

I wish you all well..it’s a job and one you can do well

gina says to  (11:00):

it is always a pleasure to have you come chat with us!

landileigh says (11:01):

wendy, i’ve loved hearing what you have to say!

dr wendy rapaport says to  (11:01):

I am happy to..thanks for asking

gina says to  (11:01):

hope you will come back

dr wendy rapaport says to  (11:03):

good night!

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Posted in Diabetes and Depression, Past Chat Transcripts | No Comments »

Dr. Cherie Stabler, Ph.D. of DRI

December 8th, 2009

Cherie Stabler, Ph.D., is an Assistant Professor of Biomedical Engineering at the University of Miami School of Medicine and Director of the Tissue Engineering Laboratory at the Diabetes Research Institute.

Her research interests are concentrated in the areas of tissue engineering, biomaterials, and noninvasive monitoring.

Specifically, Dr. Stabler’s research focuses on the design and development of various islet encapsulation techniques and evaluating how these barriers can protect the islets against the vigorous immunological and inflammatory responses of the host.

In addition, she is investigating the application of conjugation techniques to tether agents to polymer layers in order to generate implants capable of “actively” modulating the interaction between the host and implanted cells.

Dr. Stabler is studying the use of NMR imaging and spectroscopy for noninvasive monitoring and assessment of tissue engineered implants, such as insulin-producing cells.

Noninvasive monitoring of islets after they are transplanted is significant for understanding their function and remodeling over time. It is also important in determining the link between implantation and the endpoint physiologic effects.

Dr. Stabler has a background in both chemical and biomedical engineering. She received her doctoral degree from the Georgia Institute of Technology/Emory University Department of Biomedical Engineering.

Following her doctoral studies, she continued her research in tissue engineering and diabetes at the Department of Surgery at Emory University School of Medicine where she was supported by a Juvenile Diabetes Research Foundation Postdoctoral Fellowship.

—

Jon says to (17:01):
Thanks everybody for coming

Jon says to (17:02):
I have fixed the problem with the moderated chats

Jon says (17:02):
Allison will be moderating

John2795 says to (17:02):
It’s working now?

Lloyd says to (17:02):
cool, thanks

Anthill says to (17:02):
hello :)

AllisonBlass says to (17:02):
Yay! I’m a moderator again!

AllisonBlass says to (17:02):
Whew.

Jon says (17:03):
take it away allison

PowerPumper says to (17:03):
u there Peter?

Anthill says to (17:03):
yes

sstrumello says to AllisonBlass (17:03):
Yay … Allison is a moderator again!

allysmomma says to froglady (17:03):
its hard having a teenager with diabetes hr numbers all over the place

allysmomma says to (17:04):
she was in hospital this weekend

Lady_Poet says to (17:04):
hi

Florian says to Dr. Cherie Stabler (17:04):
Is Dr Stabler in the room?

AllisonBlass says to (17:04):
I’d like to welcome everyone to our chat with Dr. Cherie Stabler. Dr. Stabler is the Director of the Tissue Engineering Laboratory for the Diabetes Research Institute.

Dr. Cherie Stabler says to (17:04):
Hey everyone! Sorry if I am late – I had to kiss my daughter goodnight.

Florian says to Dr. Cherie Stabler (17:04):
Hello Dr Stabler. Are you familiar with the company Living Cell Technologies and their work with encapsulated pig islet cells that are being used in a small clincial study in Russia?

Anthill says to (17:04):
is this new disovery will go to human triles

AllisonBlass says to (17:05):
No problem, Dr. Stabler. Family comes first!

Dr. Cherie Stabler says to (17:05):
:)

Lady_Poet says to (17:05):
Dr. Stabler how much closer are we to a cure for type 1 diabetics?

Dr. Cherie Stabler says to (17:05):
Yes, I am familiar with the LCT trials. Their partnership in CA seems to be very promising.

AllisonBlass says to (17:05):
Rules of the road: Please pay attention to how many questions are being asked and give Dr. Stabler a few minutes to asking previous questions before posting your own.

Lady_Poet says to (17:05):
great news

AllisonBlass says to (17:05):
Also, stay ON TOPIC. Questions about other issues with diabetes can be answered after the chat at 10 p.m.

AllisonBlass says to (17:06):
Dr. Stabler, why don’t you give us some background on what you are currently work on?

sstrumello says to (17:06):
LCT just announced they received some generous venture capital financing!

Dr. Cherie Stabler says to (17:06):
Allison – sure.

Florian says to Dr. Cherie Stabler (17:07):
Are you close to having encapsulated islets ready for testing in humans?

Dr. Cherie Stabler says to (17:07):
My research focuses on two main areas: one is the development of nanoencapsulated coatings for islets and the other is the development of an islet-loaded device

Florian says to Dr. Cherie Stabler (17:08):
Can you explain more

Dr. Cherie Stabler says to (17:08):
The nanoencapsulation work is focused on reducing the size of standard microcapsules (such as those used by LCT) to the nanoscale.

Dr. Cherie Stabler says to (17:08):
It may not seem like much – but it is like decreasing the size of a capsule from a football field to the size of a blade of grasss.

Lloyd says to (17:08):
cool

Florian says to Dr. Cherie Stabler (17:09):
Good analogy

Dr. Cherie Stabler says to (17:09):
The importance of decreasing the capsule size is that islets are very metabolically active cells. They need lots of oxygen to survive.

Dr. Cherie Stabler says to (17:09):
When you put them in a large micocapsule, you may protect them from immune attack, but you also can kill a large portion of them because they are dying from lack of nutrients.

Anthill says to (17:09):
is the procedure easy to do?

sstrumello says to Dr. Cherie Stabler (17:10):
What, if anything, will happen to your nanoencapsulation findings … will you license it to a private company?

Dr. Cherie Stabler says to (17:10):
We are trying to decrease the size so we still have all the benefits of encapsulation (reduce the need for immunsuppression) but lose the disadvantages.

PowerPumper says to (17:10):
balance

Florian says to Dr. Cherie Stabler (17:10):
What about the material that the capsules are made of?

Dr. Cherie Stabler says to (17:11):
SStrumello – we are already in collaboration with a company that is funded by an angel fund whose primary donor has a daughter with diabetes. I cannot speak too much about it, but our primary goal is to create a cute in the fastest and safest way possible

Dr. Cherie Stabler says to (17:11):
Ha – i meant “cure” instead of “cute” of course

sstrumello says to (17:12):
Thanks!

PowerPumper says to (17:12):
Curious. Are there many such angel funds in the world of research?

Dr. Cherie Stabler says to (17:12):
The capsules are made of different biomaterials. All the materials have already been approved for clinical use, we are just tweaking them a litte to get them to do what we want.

Lady_Poet says to (17:13):
but how long a time are we speaking of Dr.? I am 45 years old and been diabetic since birth.

Dr. Cherie Stabler says to (17:13):
PP – No, not in my experience. I think that the Diabetes Research Institute has the advantage of promoting (and showing) that we are focused on a cure for diabetes. So people that want to find a cure for themselves or their children typically look to the

Dr. Cherie Stabler says to (17:13):
DIR

froglady says to Dr. Cherie Stabler (17:13):
Will your cure be universal or will it only work in certain situations?

Dr. Cherie Stabler says to (17:13):
DRI grr.

kat9rina says to (17:14):
i understand you are also looking to create an non-evasive monitoring system? How is that going?

Dr. Cherie Stabler says to (17:14):
Lady_poet – I honestly do not know. I would like to say tomorrow, but I cannot promise that. All I know is that we have everything in place that needs to be in place (the clinicians, the protocols, the support), we just need to move it forward as quickly

Dr. Cherie Stabler says to (17:14):
and safely as possible.

Lady_Poet says to (17:15):
I see

Dr. Cherie Stabler says to (17:15):
The nanoencapsulation is developed to be applicable for anyone receiving an islet transplant.

PowerPumper says to (17:15):
LP: a widely held sentiment. We’ve been hearing about cures for years. Peter & the wolf syndrome. Dr. we’re cheering for you ;)

ves says to (17:15):
thanks

Dr. Cherie Stabler says to (17:16):
The non-invasive monitoring work has been a little slower. We have been more focused on trying to develop a treatment – then we will focus more on the monitoring aspects.

Lady_Poet says to (17:16):
yes we are

Florian says to Dr. Cherie Stabler (17:16):
Would this really be a cure or perhaps another form of treatment?

Tiger Lily says to (17:16):
where do you place the islet cell transplant?

Tiger Lily says to (17:16):
the liver? the pancreas?

PowerPumper says to (17:17):
and would it need continued follow-up treatment?

Dr. Cherie Stabler says to (17:17):
Florian – we are striving for a cure, not a treatment. This is the main reason why we are using cells. We want to completely replace the damaged beta cells – not just supplement with an alternative.

sstrumello says to Dr. Cherie Stabler (17:17):
What are your thoughts about using nanotechnology for improved treatments? For example, Beverly, Massachusetts-based company known as SmartCells is encapsulating the insulin molecule in glucose sensitive polymers.

Dr. Cherie Stabler says to (17:17):
The nanocapsules can be placed in the liver if necessary, because they add virtually no volume to the islet size.

Dr. Cherie Stabler says to (17:18):
However, the liver site is non-ideal, so we are looking into alternative transplant sites and the development of devices to hold these cells.

sstrumello says to Dr. Cherie Stabler (17:18):
Skip that, you just answered my question

Dr. Cherie Stabler says to (17:19):
This is a big initiative at the DRI. It is called the Biohybrid Device and you can read a little more about it on the website.

Dr. Cherie Stabler says to (17:19):
Oh and sstrumello – we have actually used this same glucose sensitive polymer in the past. It has wonderful properties, but can also be very toxic, so we stopped most of this work.

sstrumello says to Dr. Cherie Stabler (17:20):
very interesting

sstrumello says to Dr. Cherie Stabler (17:20):
what were the adverse effects?

PowerPumper says to (17:21):
Are there any ethical issues you may be struggling with? There seems to be a lot of bio-engineering going on.

Dr. Cherie Stabler says to (17:21):
The material can release the glucose sensitive agent, ConA, which can be very toxic to cells. We are focused more on the use of biomaterials that are easily translated to the clinic, so these materials are not on the short list right now.

Dr. Cherie Stabler says to (17:22):
PP – That is an interesting question. Honestly, the main ethical issue I struggle with is trying to focus my work on developing a cure.

Lady_Poet says to (17:22):
this will be implanted how?

sstrumello says to Dr. Cherie Stabler (17:22):
Gotcha … it might work for insulin, but not in cell transplants

Anthill says to (17:22):
What would be the first thing that the pasient to do before the transplant takes place?

Lady_Poet says to (17:22):
via surgery?

Lady_Poet says to (17:22):
or shot

Dr. Cherie Stabler says to (17:22):
Lady_Poet – do you mean the biohybrid device?

Lady_Poet says to (17:23):
yes

Dr. Cherie Stabler says to (17:23):
The biohybrid device (BHD for short) is just a small cage that can be easily inserted subcutaneously (or in another location). It would be a small incision.

Lady_Poet says to (17:23):
are transplants a good idea?

Lady_Poet says to (17:23):
of the pancreas

Lady_Poet says to (17:24):
I’ve heard ppl talk

Dr. Cherie Stabler says to (17:24):
The cage is pre-vascularized for a period of time to create a nice bed of blood vessel to supply nutrients to the islets, and then the islets are implanted.

Lady_Poet says to (17:24):
implanted how

Dr. Cherie Stabler says to (17:25):
A small incision is made at the side of the device, the inner lumen of the device is removed and the islets are loaded within the inner chamber of the device.

PowerPumper says to (17:25):
man, you’d think a diabetic’s organs would be pre-vascularized already ;) *bad eye joke*

Dr. Cherie Stabler says to (17:25):
:)

Lady_Poet says to (17:25):
lol

Dr. Cherie Stabler says to (17:26):
The advantage of developing a BHD is that you can localize immunosuppression treatment to the actual site of the implant.

Dr. Cherie Stabler says to (17:26):
This is one of the major problems with current islet transplantation – the use of
immunsuppressive drugs that supress your entire body.

Lady_Poet says to (17:27):
ok surpress the entire body?

Lady_Poet says to (17:27):
not good right?

Dr. Cherie Stabler says to (17:27):
If we localize the drugs to just the site of the islet implantation, which is where it is needed, then you can use 100th dose or even 1000th of the standard dose.

sstrumello says to Dr. Cherie Stabler (17:28):
Tougher question: given your expertise, do you have any thoughts or feelings about the debate on transplantation vs. islet regeneration?

Dr. Cherie Stabler says to (17:28):
This greatly minimizes side effects and can actually improve the efficacy of islet protection.

Dr. Cherie Stabler says to (17:28):
SStrumello – that is a difficult question. My main thought has always been that you use what works best.

Lady_Poet says to (17:29):
what works best is always a shot of some sort and I am tired of those.

Dr. Cherie Stabler says to (17:29):
However, if you can isolate islets, coat them with biomaterials that mask the immune response and put them in a small device that can be easily implanted within your body in a 10min surgery. I would guess that islet transplantation would be far superior.

Lady_Poet says to (17:29):
my skin is tough from so many injections and tests for so many years.

Lady_Poet says to (17:30):
yeah

Lady_Poet says to (17:30):
thats what Im

Lady_Poet says to (17:30):
talking about

PowerPumper says to (17:30):
So for the non-scientific accountant types like me: in summary you are protecting cells with engineered tissue that lets in the good nutrients but keeps out the bad immuno-sppressive antibodies?

DiabeticDiva says to Dr. Cherie Stabler (17:30):
Any thoughts on Faustman’s latest study with the BCG vaccine?

Dacarsha says to (17:31):
how long before islet transplants are available for the little guy – not just the rich folks

Dr. Cherie Stabler says to (17:31):
PP – basically yes. You allow transport of nutrients and insulin, but you mask all of the surface antigens that basically scream at the immune system “Hey I am not you – attack me”.

Dacarsha says to (17:31):
years or decades?

Dr. Cherie Stabler says to (17:32):
DD – I think the Faustman study is a very interesting approach and I will be watching to see the further studies.

froglady says to Dr. Cherie Stabler (17:33):
Earlier you sounded like you have all the pieces in place to start clinical trials – is that right?

Dr. Cherie Stabler says to (17:33):
Dacarsha – To my knowledge, the development of clinical trial candidates is independent of income. However, if you mean broader applicability, we hope to have that.

Dr. Cherie Stabler says to (17:33):
Our goal is to develop a technology that is not just focused on islets, but could also be applied to other cell types, whether they are stem cells, genetically engineered cells, or cells from other animal sources.

PowerPumper says to (17:34):
do the islets first please! 8-|

Dr. Cherie Stabler says to (17:34):
Froglady – What I meant is that we have all the tools in place to start a clinical trial the minute that we have promising results in larger animals. At this stage, we do not have
that data, but we have the line in place to push it forward.

Dr. Cherie Stabler says to (17:34):
PP :)

Dacarsha says to (17:36):
Type 1s first, right?

froglady says to Dr. Cherie Stabler (17:36):
Do you have an estimate of the time frame before you will be ready for clinical trials?

Dr. Cherie Stabler says to (17:36):
That is the unique thing about the DRI – we have an entire institute that is focused on developing a cure. We also have the tools, people, and procedures in place to translate anything promising on the benchtop, to the mouse/rat, to large animals,

Dr. Cherie Stabler says to (17:36):
…and then to the clinic

Dr. Cherie Stabler says to (17:36):
Type 1 is the top priority of the DRI

Dr. Cherie Stabler says to (17:36):
Froglady – I wish I did. The problem with doing something no one has done before is that you have no idea how long it will take.

Dr. Cherie Stabler says to (17:37):
Steps that I predicted would take months have taken days, but steps that I thought would take days have taken weeks.

Florian says to (17:37):
Dr Stabler, do you know what the encapsulation material is that is being used by LCT?

Dr. Cherie Stabler says to (17:37):
Yes. They have published on it.

froglady says to Dr. Cherie Stabler (17:38):
It’s wonderful that you are getting somewhere. We are all praying that you move forward fast!

Carolina says to (17:38):
Sorry I’m late. Are you also encapsulating porcine islets?

Florian says to (17:38):
It seems to be protecting the pig islets

Anthill says to (17:39):
are anti rejecting drugs are used?

Dr. Cherie Stabler says to (17:39):
Yes. I does seem promising. It is based on the standard technique of alginate and a polycation polymer.

Dr. Cherie Stabler says to (17:40):
Anthill – for what study.

Anthill says to (17:40):
transplant

Dr. Cherie Stabler says to (17:40):
Carolina – porcine islets are not our focus at this time. We are focused on human islets,
but porcine islets are a possibility.

Dr. Cherie Stabler says to (17:40):
We will always be faced with the organ shortage problems, so looking for alternative sources of beta cells is critical

Lady_Poet says to (17:41):
eww

Lady_Poet says to (17:41):
lol u mean they might use porky on us?

Carolina says to (17:41):
You think it’s worthwhile pursuing human cadaver islets when there will never be enough for all the people with diabetes?

Dr. Cherie Stabler says to (17:42):
Carolina – Yes in the respect that xenotransplantation (the implantation of cells from different species like pig to human) has tremendous risks.

sstrumello says to Dr. Cherie Stabler (17:42):
You mentioned that your technology that is not just focused on islets, but could also be applied to other cell types. Do you see this as having applicability beyond diabetes, and are your results published so others will have access to the work?

Anthill says to (17:42):
the pork purifed insulin like Protaphane

Dr. Cherie Stabler says to (17:42):
LCT has sought to combat these risks by using very “clean” pigs, but the risk is still there.

froglady says to Dr. Cherie Stabler (17:42):
I am on the DRI website. I want to contribute to your research. The choices for use of the donaton are islet transplantation, Stem Cell, Eliminating Immunosuppression,
Emerging Technologies

Carolina says to (17:42):
Has there been any transmission of PERV from pig to human?

froglady says to Dr. Cherie Stabler (17:43):
Which one is you? Emerging Technologies?

Dr. Cherie Stabler says to (17:43):
SS (I hope you dont mind the shortening). Yes, there is applications to other areas. In the past, I have used the same technology for blood vessel substitutes. We will publish our results soon.

Dr. Cherie Stabler says to (17:43):
Emerging technologies

Florian says to (17:44):
It’s going to take a lot of work, a lot of success, by a lot of researchers to make this all work and available to all the people who need it.

Dr. Cherie Stabler says to (17:44):
Carolina – not to my knowledge. However, the implantation of live porcine cells into humans is extremely limited.

Dr. Cherie Stabler says to (17:45):
The use of porcine proteins (like insulin) or dead tissue (like heart valves) do not carry the same risks of PERV transmission.

Carolina says to (17:45):
I really value your work. I am just particularly afraid of the long term results of immunosuppression

Dr. Cherie Stabler says to (17:45):
Carolina – that is a big focus on our work.

Dr. Cherie Stabler says to (17:46):
We know that the use of high levels of immunosuppressive drugs is not going to be feasible to treat all diabetics.

Carolina says to (17:46):
And it doesn’t look like there are going to be a lot of human islets anytime soon

Dr. Cherie Stabler says to (17:46):
This is why we are focused on developing alternatives: such as nanoencapsulation and localized immunosuppression.

Lady_Poet says to (17:47):
(@)

Dr. Cherie Stabler says to (17:47):
?

Lady_Poet says to (17:48):
sorry meant :(

Lady_Poet says to (17:48):
kind of feeling that no cure in time for me.

Lady_Poet says to (17:48):
Im not getting any younger

Dr. Cherie Stabler says to (17:49):
Carolina – I believe when it is demonstrated that we have a feasible means to cure diabetes using islets cells, the source will increase.

Carolina says to (17:49):
How will the source suddenly increase?

Dr. Cherie Stabler says to (17:49):
Right now, we are not capitalizing on the organs we have, because the technique of islet transplantation is so new.

Dr. Cherie Stabler says to (17:49):
Most pancreas donations are not used because of the lack of places that can perform islet isolation.

sstrumello says to Dr. Cherie Stabler (17:50):
Isn’t the only way to know if PERV is a risk is to do trials?

Dr. Cherie Stabler says to (17:51):
When a viable cure is developed, you can bet that there will be a lot more places that perform islet isolations. I mean, Miami is the only place in the whole state of Florida that
isolates islets.

PowerPumper says to (17:51):
I have to run soon, so tyvm Dr. It’s really encouraging communicating with a front line researcher.

Carolina says to (17:51):
Respectfully, I don’t believe there will ever be enough cadaver pancreas tissue to provide iselts to everyone who has type 1 diabetes in the world

Dr. Cherie Stabler says to (17:51):
PP – thanks for joining in :)

Dr. Cherie Stabler says to (17:51):
Carolina – I completely agree with you.

Dr. Cherie Stabler says to (17:51):
That is why we have many researchers working on finding alternative sources for beta cells.

Carolina says to (17:52):
What other sources look promising at the moment?

Dr. Cherie Stabler says to (17:52):
We have researchers working on created beta cells from embryonic stem cells, amniotic fluid, cord blood, etc. or creating beta cells from liver cells.

Dr. Cherie Stabler says to (17:53):
I meant “creating”

froglady says to Dr. Cherie Stabler (17:53):
Everyone, it is really easy to donate to Dr. Stabler’s research: https://www.diabetesresearch.org/Donate.aspx pick Emerging Technologies

sstrumello says to (17:53):
Dr. Stabler has done a great job typing and keeping up with everyone, I have to say I’m really impressed!

Carolina says to (17:53):
Are any of them glucose responsive yet? BTW, I’m a long time supporter of the DRIF

Lady_Poet says to (17:53):
well doc time for another shot gotta go ty for your answers.

Dr. Cherie Stabler says to (17:54):
The embryonic stem cell work is very promising. We have two researchers that are taking alternative approachs and both have really made a lto of progress recently.

Dr. Cherie Stabler says to (17:54):
Thanks Carolina :) I know they have some promising cells, but they probably could answer more clearly than I can.

AllisonBlass says to (17:55):
I just want to point out to everyone that it’s coming up on the hour and the official chat is going to end then, so if you have any last minute questions, please get them in now.

Dr. Cherie Stabler says to (17:55):
We are also in collaboration with other researchers, like Dr. Atlala in Wake Forest, who has some promising research using amniotic cells (take from the amniotic fluid of
pregnant woman). We are working to scale-up his promising results and test these…

Dr. Cherie Stabler says to (17:55):
cells in rodents.

kat9rina says to (17:56):
there was a doc from the U of Toronto talking about stem cells. seems like there is one that creates a new neuron. Would a neuron be a good choice as it already has a brain?

Anthill says to (17:56):
are anti rejection drugs are usd in the transplant recpieant

Dr. Cherie Stabler says to (17:57):
:) I am not sure kar9rina. Usually it is easier to get a stem cell to become a neuron than a beta cell, so that is why the research in that areas have been a little more efficient.

kat9rina says to (17:57):
for the stem cells to work best they would have to be connected to the neurological system of the recipient

Dr. Cherie Stabler says to (17:58):
Anthill – we hope to not use anti-rejection drugs when a patient receives an islet transplanta.

sstrumello says to (17:58):
Thank you so much for chatting with us this evening, Dr. Stabler … you did really well in the chatroom and answered so many questions!

Anthill says to (17:58):
WOW!!! :D

Carolina says to (17:58):
I wish you continued success with your research.

Dr. Cherie Stabler says to (17:58):
It may be that we will have to use a small dosage at the initial time of transplant – but hopefullly wean off after that.

Dr. Cherie Stabler says to (17:58):
SS and Carolina thank you. It is wonderful to chat with you all.

kat9rina says to (17:58):
Thank you Dr. Stabler, enjoyed learning more about your research

Jeffrey says to (17:58):
thank you for being here tonight Dr. keep up your good work :)

Carolina says to (17:58):
Are you still using the edmonton protocol in recipients?

Dr. Cherie Stabler says to (18:00):
Carolina – we are using a modified Edmonton Protocol that has shown a longer patency
in patients. Dr. Alejandro has some wonderful results that should be published very soon.

AllisonBlass says to (18:00):
It’s now 10pm, so I think we should all thank Dr. Stabler for her time and let her get off to bed. It’s getting late here on the East Coast. Dr. Stabler, do you have contact information if anyone has any more questions?

Florian says to (18:00):
Thanks Dr Stabler. Now go back to the lab and please find us a cure.

Anthill says to (18:00):
Yes indeed

sstrumello says to (18:00):
Good night, and thinks again!

Dr. Cherie Stabler says to (18:01):
Thanks. The DRI gives a lot of tours, so come by anytime.

Carolina says to (18:01):
THANKS DTF

Dr. Cherie Stabler says to (18:01):
Thanks Allison. Anyone can contact me via the DRI. They also give tours of the facility, so come by anytime.

Dr. Cherie Stabler says to (18:02):
Florian – can I take the night off ;)

Jeffrey says to (18:02):
lol

AllisonBlass says to (18:03):
The chatroom is open for anyone who wants to stay.

Jeffrey says to (18:03):
yes Dr. take the night off, you’ve earned it :)

Dr. Cherie Stabler says to (18:03):
Well I better head out. Thanks you guys. It has been fun.

Posted in Diabetes Research, Past Chat Transcripts | No Comments »

OMNIPOD CHAT with Amy Tenderich

December 8th, 2009

Amy- how long do the batteries in the PDM typically last?
AmyT says to (18:08):

Dan! the m oderate chat was on i had to turn it off

blondy2061h says to (18:08):
When there’s an error does the Pod and the PDM beep or one or the other?

*** (18:08):Welcome to OMNIPOD Chat , DiabeticDiva !

gina says (18:08):
im gonna send out another chat reminder

blondy2061h says to (18:09):
(sorry if it’s too soon to barage with questions, but I feel like I don’t get them in if I wait!)

*** (18:09):Welcome to OMNIPOD Chat , jasonjayhawk !

AmyT says to (18:09):
Usually the pod beeps if something’s wrong with it.

AmyT says to (18:09):
No problem, shoot.
kiddydoll8609 says to (18:09):
brb:P

shiksamaidel says to (18:09):
how long can one stay in a swimming pool?

gina says (18:09):
Amy, how is it when you work out?

AmyT says to (18:09):
No limits on swimming, as far as I know.

jasonjayhawk says to (18:09):
Whew, I thought I was in the Borg’s spaceship–just zombies!
gina says (18:09):
like does it feel l ike is bopping up and down

shiksamaidel says to (18:09):
30 minutes in 8 feet – but real life???
AmyT says to (18:10):
Workouts are fine when I wear the pod on my belly. If it’s on my arm and I’m jumping around in aerobics, it has sometimes come loose.

blondy2061h says to (18:10):
PDM battery life?

AmyT says to (18:10):
I never spent more than 30min in 8 feet :)

shiksamaidel says to (18:10):
lol

blondy2061h says to (18:10):
Hard to breath at 8 feet ;0

jasonjayhawk says to (18:10):
Yikes, that would be a bad sign!

shiksamaidel says to (18:10):
but I spend an hour in 5

AmyT says to (18:10):
I have the full backlight option on (cause I don’t see so well), but my batteries still last about 6 weeks, I’d say.

jasonjayhawk says to (18:10):
You must be very tall.

blondy2061h says to (18:11):
That’s pretty good

DiabeticDiva says to (18:11):
lol

AmyT says to (18:11):
They are standard AAA batteries, so super easy to replace.

jasonjayhawk says to (18:11):

*high-fives DiabeticDiva*

blondy2061h says to (18:11):
how many does it take?

AmyT says to (18:11):
2
sstrumello says to AmyT (18:11):
Question about Omnipod and insurance coverage. So far, there are only a handful of people out there with Omnipods, and the few that have inquired said the company does not really have an insurance team the way Minimed/Animas do. What was your experience?
jasonjayhawk says to (18:11):
1 for running the pump, and the other one for zapping you into submission when you don’t pus hthe right buttons.
Jeff says to (18:11):
you leave back light on allways?
AmyT says to (18:11):
As you know, I’ve never used a “traditional” pump, but I do love the OP!
AmyT says to (18:12):
Funny, Jason.
gina says (18:12):
amy, how do you connect the omnipod exactly?
*** (18:12):Welcome to OMNIPOD Chat , saychz !
AmyT says to (18:12):
Insurance seems to differ by carrier and also by state, so I can’t really give you details… all I know is that the company has agreements with Aetna, Blue Shield, and I think also Pacificare now.
*** (18:12):Welcome to OMNIPOD Chat , rachel !
shiksamaidel says to (18:12):
place on forhead and press infuse! lol
*** (18:12):Welcome to OMNIPOD Chat , chelsea !
jasonjayhawk says to (18:12):
I’d like to know the most important thing: How is the software?
blondy2061h says to (18:12):
Have you had any pods fail?
AmyT says to (18:13):
The pod is connected just like a sensor for a CGM. You still the adhesive to your body, and push the PDM buttons to make the tiny cannula insert.
DiabeticDiva says to jasonjayhawk (18:13):
Is the software compaitble with Mac?
Dan F says to (18:13):
Question: Have you thought about using the Dexcom 7 in tandem with the Omnipod?
DiabeticDiva says to (18:14):
Is the software compatible with mac?
blondy2061h says to (18:14):
Of course not DD :(
AmyT says to (18:14):
Honestly, the downloading software is not ready for prime time. You can get about 3 days of data with it (its called Pathfinder), but limited… Insulet is working on improving it.
blondy2061h says to (18:14):
bootcamp for the win!
AmyT says to (18:14):
For me, that’s by far NOT the most important thing, though.
blondy2061h says to (18:14):
Jason- you use a Cozmo now, right?
jasonjayhawk says to (18:14):
Do you use any extra sticky goop to keep the pump on?
kiddydoll8609 says to (18:15):
i must leave now……i need my beauti rest
jasonjayhawk says to (18:15):
blondy: No pump for me yet. This would be my first. I’ve got the paperwork nearly ready to fax.
kiddydoll8609 says to (18:15):
(L)
jasonjayhawk says to (18:15):
kiddy: we just started!
blondy2061h says to (18:15):
Ah, cool
Jeff says to (18:15):
by kiddy
Jeff says to (18:15):
bye
kiddydoll8609 says to (18:15):
but
kiddydoll8609 says to (18:15):
but
AmyT says to (18:15):
Yes, I’ve used Mastisol. Works pretty well. But also makes everything sticky, so be careful where you spray it :)
kiddydoll8609 says to (18:15):
its bed time here
blondy2061h says to (18:15):
Mastisol is a spray?
AmyT says to (18:15):
good night
blondy2061h says to (18:15):
I thought it was a wipe
kiddydoll8609 says to (18:15):
night ALL
*** (18:15):rachel left this room, entered another room
kiddydoll8609 says to (18:15):
:)
*** (18:15):Welcome to OMNIPOD Chat , rachel !
blondy2061h says to (18:15):
never used it though
*** (18:15):Welcome to OMNIPOD Chat , elgaralex !
AmyT says to (18:15):
Comes in a spray form, yes. Maybe also in gel form
kiddydoll8609 says to (18:16):
take care
jasonjayhawk says to (18:16):
Maybe I could stick my twins to the wall with it. I’m writing that down.
*** (18:16):rachel quit the room
saychz says to (18:16):
Jasonjayhawk..do you know anyone from VA?
blondy2061h says to (18:16):
Lol Jason
saychz says to (18:16):
Your name seems familiar.
Jeff says to (18:16):
I thought it was wipe also
AmyT says to (18:16):
Does anyone here also use the Omnipod?
jasonjayhawk says to (18:16):
Saychz, I don’t. I’m from the Midwest (Kansas City).
blondy2061h says to (18:16):
Nope, 522 here
elgaralex says to (18:16):
no , animas
saychz says to (18:16):
I have a sister that used to talk to a guy named JayHawk……
blondy2061h says to (18:16):
Very curious in the Omnipod though
AmyT says to (18:16):
OK, and you’re not anxious to get rid of the tubing?
gina says (18:16):
i hate the tubing
blondy2061h says to (18:17):
but not due to update for 3.5 years
kiddydoll8609 says to Jeff (18:17):
NIGHT
Jeff says to (18:17):
mine will be here tomarrow Amy
jasonjayhawk says to (18:17):
I don’t like the idea of tubing because I have 11-month old twin boys that yank at everything.
gina says (18:17):
jeff you are getting the omni?
AmyT says to (18:17):
cool!
*** (18:17):kiddydoll8609 quit the room
*** (18:17):saychz quit the room
Jeff says to (18:17):
yes
shiksamaidel says to (18:17):
my dogs are tube yankers
*** (18:17):Welcome to OMNIPOD Chat , saychz !
gina says (18:17):
amy, what is the worst thing about the omni in your opinion?
Dan F says to (18:17):
None. Thinking about Omnipod, and separatelt]y the dexcom 7
jasonjayhawk says to (18:17):
Amy, what’s your experience with the customer service when dealing with a pod that has failed? Or a bleeder–have you had a bleeder that gushes after the pod has stuck you?
sstrumello says to (18:17):
I was always partial to Skin-Tac H … it had an accurate applicator, so no sticky skin where it wasn’t needed!
AmyT says to (18:17):
Yes, I have little ones, too. They’re constantly “on my bod,” you know?
AmyT says to (18:17):
Ooh, I should try that.
gina says (18:17):
lol the omni bod!
blondy2061h says to (18:18):
I would want to pod to be smaller before I went for it
*** (18:18):jasonjayhawk left this room, entered another room
shiksamaidel says to (18:18):
any experience with a jaccuzzi?
AmyT says to (18:18):
Customer service has been great. They alsways call back asap, and send out replacements immediately when necessary.
sstrumello says to shiksamaidel (18:18):
LOL!
*** (18:18):Welcome to OMNIPOD Chat , jasonjayhawk !
blondy2061h says to (18:18):
Amy, how often would you say pods fail?
chelsea says to (18:19):
do the thing that stick to you were the insulin goes dose that stick out is it relay noteable through a shirt
AmyT says to (18:19):
OK, jacuzzi. The only way to do it is to wear the pod on your arm, and keep your arm out of the hot water to avoid cooking the insulin.
*** (18:19):Welcome to OMNIPOD Chat , AllisonBlass !
Jeff says to (18:19):
have you ever filled a pod with a disposable pen?
*** (18:19):Welcome to OMNIPOD Chat , Johnboy !
shiksamaidel says to (18:19):
good idea
AmyT says to (18:19):
Whoa… one sec.
jasonjayhawk says to (18:19):
How about filling your pod with insulin….any idea if you could use a FlexPen (or any pen) to fill it? I’ve got a stash that I hope I can use with the OmniPod.
gina says (18:19):
HOLD OFF ON QUESTIONS FOR A MINUTE
*** (18:19):jasonjayhawk left this room, entered another room
*** (18:20):Welcome to OMNIPOD Chat , jasonjayhawk !
gina says (18:20):
GIVE HER A SECOND TO CATCH HER TYPE LOL
AmyT says to (18:20):
First, the pod is not very noticeable at all — except maybe in my really slinky dresses (no prob for the guys)
AmyT says to (18:20):
I have not used a pen to fill the pod, but I guess you can draw up the insulin from pretty much any source.
chelsea says to (18:20):
ok
*** (18:21):elgaralex quit the room
sstrumello says to jasonjayhawk (18:21):
How big is the reservoir capacity?
AmyT says to (18:21):
I’ve only had 3 pods fail in nearly a year. One was an “occlusion” issue where the cannula hit some scar tissue on my stomach.
jasonjayhawk says to (18:21):
200 units.
sstrumello says to (18:22):
Thx
Jeff says to (18:22):
any PDM failure?
Dan F says to (18:22):
Amy, I’ll try again. Have you considered adding the Dexcom 7 to
your use of the Omnipod?
AmyT says to (18:22):
Not in terms of insulin delivery. Early on, my first PDM had some problems with the glucose monitor acting funny (not responding), but Insulet FedEx’d me a new one overnight.
AmyT says to (18:23):
Dan, I am using both products right now.
*** (18:23):Welcome to OMNIPOD Chat , saraknic !
Jeff says to (18:23):
they are working together now to mate the two together, right?
jasonjayhawk says to (18:23):
Do you HAVE to use the PDM for glucose testing? (e.g., what if your insurance doesn’t cover Freestyle strips?)
Dan F says to (18:24):
And you like the Dexcom? I’ve heard of problems the first day
with a new sensor. Wild readings.
jasonjayhawk says to (18:24):
Jeff: this is a G-rated room, no talking about mating diabetes products, although we would love to have some of the offspring. ;)
AmyT says to (18:24):
No, you don’t have to use the PDM for testing. You could just use it for dosing, and simply input your BG number that you got off another meter.
jasonjayhawk says to (18:24):
Amy: are your fingers tired of typing yet?
AmyT says to (18:24):
Yessss!
gina says (18:24):
amy, llol
DiabeticDiva says to AmyT (18:25):
Amy’s getting carpal tunnel fast
shiksamaidel says to (18:25):
lsmft
jasonjayhawk says to (18:25):
lol!
sstrumello says to (18:25):
This from a pro …. imagine what its like for those who aren’t on the computer as regularly!
DiabeticDiva says to AmyT (18:25):
She’s a trooper
AmyT says to (18:25):
To be totally honest, I am not having a good experience with the Dex7 right now. Readings are wildly inaccurate. Could be a bad sensor?
gina says (18:25):
Amy loves typing have you read her blog come on amy!
DiabeticDiva says to AmyT (18:25):
Don’t tell me that Amy! I’m getting training for it tomorrow!!!!
jasonjayhawk says to (18:25):
Amy: When you’ve had those failures, does insulet just send you a new pod per failure?
*** (18:25):Welcome to OMNIPOD Chat , AllieB2 !
AmyT says to (18:25):
Typing is my life (oh, and glucose testing of course)
Dan F says to (18:26):
The Dexcom 7 rep says this is a pretty universal problem.
DiabeticDiva says to AmyT (18:26):
lol
Dan F says to (18:26):
For first 12 hours with EACH newsensor.
saraknic says to (18:26):
i am sure you already answered this – that’s what i get for being late, but is there any way to be a pod to last longer than three days?
*** (18:26):jasonjayhawk left this room, entered another room
*** (18:26):Welcome to OMNIPOD Chat , jasonjayhawk !
jasonjayhawk says to (18:26):
good question, sara
AmyT says to (18:26):
Yes, Insulet has been very responsive. They need the Lot# of the failed pods, and then they send an envelope to return the failed products, so they can determine what went wrong.
AmyT says to (18:27):
Nope. Can’t do it.
jasonjayhawk says to (18:27):
Wow, so if you’ve had a bleeder, they don’t mind getting a bloody product sent back to them? (I’d hate to be that mail opener.)
AmyT says to (18:27):
I wish you could, because I always have extra insulin in there.
saraknic says to (18:27):
exactly
saraknic says to (18:27):
thats why i hesitate
AmyT says to (18:27):
The few “bleeders” I’ve had were not failed pods. They worked fine. I just got very messy when I removed them.
Johnboy says to (18:28):
Is there some sort of pod recycling center or something?
Jeff says to (18:28):
dont you draw it back out?
saraknic says to (18:28):
and my insurance doesnt like freestlye which takes away some of the fun
AmyT says to (18:28):
They should definitely do a recycling program.
jasonjayhawk says to (18:28):
sara, same with my insurance (cigna) = no freestyle.
blondy2061h says to (18:29):
my CDE said if you have an Omnipod or Cozmo they will write a letter of medical necessity
jasonjayhawk says to (18:29):
Amy, any ideas if they would consider making the data (insulin dosing and glucose measurements) exportable into, say, an CSV or some other kind of “open standard” for us data-analysis geeks?
blondy2061h says to (18:29):
for freestyle strips
AmyT says to (18:29):
You can draw some insulin back out, but when the amount is very little, it’s hard to “suck” those few units out (excuse the expression)
AmyT says to (18:29):
Jason,
AmyT says to (18:29):
I keep asking those questions, but they’re not allowed to give out product roadmap info…
*** (18:29):Welcome to OMNIPOD Chat , CTG !
Johnboy says to (18:30):
it’s not on my formulary either, but the ins co pays because its used with the integrated meter on the cozmo pump…there is some leeway depending on how the Rx is writen, i think
jasonjayhawk says to (18:30):
Grrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!! Tell them, “At least Cozmo advertises Open Standards!” (They do on their website, at least).
blondy2061h says to (18:30):
Boo, high alarm with 2 up arrows
blondy2061h says to (18:30):
and it’s accurate
AmyT says to (18:30):
boo!
AmyT says to (18:30):
We’ve all been there.
shiksamaidel says to (18:30):
Amy is omnipod easy to use????
*** (18:31):CTG quit the room
blondy2061h says to (18:31):
I have it set at 180, and i’m 169, I was 105 about 15 minutes ago
*** (18:31):Welcome to OMNIPOD Chat , landileigh !
blondy2061h says to (18:31):
i flew up
AmyT says to (18:31):
Extremely! One of the best things about it.
DiabeticDiva says to (18:31):
Amy, do you work for Omnipod, or just use their products?
Jeff says to (18:31):
how many basal profiles do you use?
gina says (18:31):
so easy to use its virtually pain free lol
*** (18:31):Welcome to OMNIPOD Chat , yami !
sstrumello says to (18:31):
Geez … the guy at Agamatrix Keynote Wavesense was very forthcoming about the hassles of “push” vs. “pull” and Pharmacy Benefits Managers (PBMs)
jasonjayhawk says to (18:31):
blondy, I thought you said you “threw up”. Gotcha. ;)
yami says to (18:31):
hello everyone
gina says (18:31):
hi yami
landileigh says to (18:32):
hello everyone!
yami says to (18:32):
how are you all . hi gina
gina says (18:32):
hi landi
landileigh says to (18:32):
hi gina!
AmyT says to (18:32):
I am not employed by them at all. I have done some writing projects in the past — a few “user profiles” of kids on the OP. But we have an agreement by which they tell me essentially NOTHING confidential. So I have no special visibility into the company.
AmyT says to (18:32):
Hi Gina!
yami says to (18:32):
wow first time and 17 folks amazing
gina says (18:33):
hello
yami says to (18:33):
where are you from gina?
gina says (18:33):
yami this is a chat about the OMNI POD INSULIN PUMP

gina says (18:33):
NY

sstrumello says to (18:33):
Totally unrelated note, but Novo Nordisk pulled the plug on their AERx inhaled insulin product today!

Jeff says to (18:33):
lol

AmyT says to (18:33):
Who here will be using the OmniPod soon?

landileigh says to (18:34):
i’m sorry i’m late to this chat, so i don’t know if this question has been asked. what is the profile size of an omnipod compared to a paradigm or one of the other pumps?

Jeff says to (18:34):
me

*** (18:34):Welcome to OMNIPOD Chat , Sliderule !

yami says to (18:34):
what is omnipod?

AmyT says to (18:34):
The OP is about the size of half a kiwi, if that helps.

landileigh says to (18:34):
i’m trying to make up my mind as to which i want to use

gina says (18:34):
thats not too big

Jeff says to (18:34):
I tracked mine today online. It’s in Portland….lol

saraknic says to (18:34):

amy – my endo mentioned it is cheaper than MM

saraknic says to (18:34):
which got me interested

landileigh says to (18:34):
and because you love yours amy, is why i’m even thinking of the Omnipod

AmyT says to (18:35):
Yes, the upfront costs are lower than traditional pumps.

jasonjayhawk says to (18:35):
I hate to ask you this, but what’s the size of a kiwi? I’ve never been exposed to them in my midwest culture.

landileigh says to (18:35):
SARA! D-365!

AmyT says to (18:35):
Ooh, no pressure… <:o)

DiabeticDiva says to (18:35):
(here comes the BUT….)

DiabeticDiva says to (18:35):
lol

saraknic says to (18:35):
yup – thats me!

AmyT says to (18:35):
Jason, you are kidding me!

saraknic says to (18:35):
i am uploading pics now

shiksamaidel says to (18:35):
Metoo hard to decide

AmyT says to (18:35):
pics of a kiwi?

jasonjayhawk says to (18:35):
Sara, you’re uploading pics of a kiwi? Thanks!

landileigh says to (18:35):
lol jason

chelsea says to (18:35):
how much insulin dose it fill

jasonjayhawk says to (18:35):
200 units.

saraknic says to (18:36):
um – no sorry jason

jasonjayhawk says to (18:36):
Is it joke time?

saraknic says to (18:36):
d-365 pics

sstrumello says to AmyT (18:36):
Amy, you mentioned that the upfront costs are lower than traditional pumps, does that mean the ongoing costs differ? It seems to me that you don’t have ongoing expense of sets and tubing, so the entire cost would be less, no?

DiabeticDiva says to (18:36):
Knock knock

jasonjayhawk says to (18:36):
Who’s there?

saraknic says to (18:36):
focus, people, focus :)

jasonjayhawk says to (18:37):
Each pod costs $35.

Jeff says to (18:37):
do you carry a pen Amy? How do you address a pod failure if your away from your home supply?

DiabeticDiva says to (18:37):
Good question

AmyT says to (18:37):
See <a href=”http://www.diabetesmine.com/omnipoding/index.html”>www.diabetesmine.com/omnipoding/index.html</a> for basics on the product

jasonjayhawk says to (18:37):
200 units per 3 days for typical people = $4300 a year for pods

AmyT says to (18:37):
Good question.

chelsea says to (18:37):
wow i

landileigh says to (18:37):
is the controller similar to other pumps? it looks kind of like a PDA

saraknic says to (18:38):
gosh, i use no where near 200 in three days

*** (18:38):jasonjayhawk left this room, entered another room

*** (18:38):Welcome to OMNIPOD Chat , jasonjayhawk !

saraknic says to (18:38):
that is why i am not sure
*** (18:38):landileigh quit the room

AmyT says to (18:38):
I’ve been kind of lax about that in day-to-day life. Always carry pen/syringes, etc. when I travel, but when I’m running around my home town I don’t. Once a pod came off my arm while we were eating out in San Francisco. Made me think I need to carry backup

*** (18:38):yami left this room, entered another room

jasonjayhawk says to (18:38):
Any idea if the controller is upgradable, should they have firmware updates for it?

shiksamaidel says to (18:39):
do you need 2 fill all 200 units?

blondy2061h says to (18:39):
sara, you don’t need to fill it all the way

AmyT says to (18:39):
No. minimum is 100u

*** (18:39):Welcome to OMNIPOD Chat , landileigh !

landileigh says to (18:39):
i got kicked out

jasonjayhawk says to (18:39):
Does it prime itself while it’s stuck on you? Or do you do that before you stick it on?

Jeff says to (18:39):
I’ve been thinking how to address that issue Amy

AmyT says to (18:39):
I’m sure they controller will be upgraded at some point, but like i said, they won’t give me any future plan info…

jasonjayhawk says to (18:39):

landileigh: probably kicked out for telling a bad knock-knock joke.

AmyT says to (18:39):
Priming happens before you insert

DiabeticDiva says to (18:39):
Do you really change yours every 2-3 days? (I know we’re sopposed to, but sometimes I leave my pump site in for up to 5 days)

jasonjayhawk says to (18:40):
Yeah, does it force you to change?

AmyT says to (18:40):
As noted, you HAVE TO change after 3 days.

saraknic says to (18:40):
right but a pod is a pod. $35 no matter how much i fill it

AmyT says to (18:40):
Yes

*** (18:40):jasonjayhawk left this room, entered another room
*** (18:40):Welcome to OMNIPOD Chat , jasonjayhawk !

landileigh says to (18:40):
does your insurance cover the omnipod?

Dan F says to (18:40):
Not having backup around town not any worse that leaving kit
at home in traditional mode.

AmyT says to (18:40):
It does now. Took a while.

jasonjayhawk says to (18:40):
Was it on your blog, or somewhere else, that stated something about the # of OmniPod users out there now? It was over 1,000, from what I can recall.

gina says (18:40):
if i leave my pump on for more than 3 days it starts hurting

jasonjayhawk says to (18:41):
If you carry a backup, that would mean needing a backup of an insulin vial, too. That would be more difficult, compared to standard pumps, where you just need an infusion set in the glove compartment.

sstrumello says to (18:41):
Amy, the Apidra Opticlix pen cartridges are HUGE, so its not really something you could carry around as a backup anyway!

Jeff says to (18:41):
ever use a leg application?

AmyT says to (18:41):
There’s a blog saying there are almost 2500 users. See <a href=”http://ouromnipod.blogspot.com”>http://ouromnipod.blogspot.com</a>

blondy2061h says to (18:42):
I often wear my infusion set 4-5 days

landileigh says to (18:42):
how about activities with the omnipod? do you shower with it on? swim? other outside activities?

*** (18:42):Dan F quit the room

*** (18:42):DiabeticDiva left this room, entered another room

AmyT says to (18:42):
Yup, shower, swim, plus “other activities” 8-|

jasonjayhawk says to (18:42):
gina, you must need a new pump, if it starts hurting after wearing it for 3 days, it must weigh 20 pounds or more! :O

gina says (18:42):
lol

*** (18:42):Welcome to OMNIPOD Chat , DiabeticDiva !

jasonjayhawk says to (18:43):

Jeff: I thought you said “ever use leg amputation?” Whew.

shiksamaidel says to (18:43):
How about a day on the beach?

AmyT says to (18:43):
Yeah, what was that question?

landileigh says to (18:43):
where do you usually put the omnipod? belly? arm? leg? anyplace very uncomfortable?

Jeff says to (18:43):
application

AmyT says to (18:43):
I’ve been to the beach many times, yes. As noted on my blog, I bought a whole new wardrobe of “Tankinis” this year to cover the bump.

*** (18:43):jasonjayhawk left this room, entered another room

*** (18:43):Welcome to OMNIPOD Chat , jasonjayhawk !

landileigh says to (18:44):
lol, heck i should just drive down and see the thing in person! shouldn’t i amy?

gina says (18:43):
i remember that blog post

gina says (18:44):
she had a pic on her blog

shiksamaidel says to (18:44):
Any prob with the insulin cooking??

saraknic says to (18:44):
jason – what is going on with your computer?

AmyT says to (18:44):
Arm is sometimes uncomfortable. Plus I sometimes don’t get such good absorption there. But I have to give my belly a break now &amp; then.

jasonjayhawk says to (18:45):
Mmmm, did somebody say cooking? sara: every time I hit a key I couldn’t hit, it kicks me into a different room. I should stop hitting that up arrow key.(Tp)

saraknic says to (18:45):
sounds like it!

AmyT says to (18:45):
Stay put, Jason!

*** (18:46):Welcome to OMNIPOD Chat , Lark !

*** (18:46):Welcome to OMNIPOD Chat , kristaw !

jasonjayhawk says to (18:46):
Now you see why I need an Omnipod….if I had cord, I’d be pulling it out!

AmyT says to (18:46):
What else do you guys think is different from other pumps?

blondy2061h says to (18:46):
I like tht you can mark bg’s as before or after a meal

Jeff says to (18:46):
omni is better……..lol

blondy2061h says to (18:47):
but I wish it used that to do averages

shiksamaidel says to (18:47):
Amy, is this your first pump?

sstrumello says to (18:47):
How big is the controller? The size of a typical remote control?

blondy2061h says to (18:47):

and a before/after meal chart in the software

AmyT says to (18:47):
Yup, first pump for me. I had no desire to go “wired”

jasonjayhawk says to (18:47):
The data exchange is my biggest concern. I wish they’d commit to better software for retrospective data analysis. I’m all about looking at past events to predict the future. (Like if I keep hitting the up arrow, will I do it again? Probably…. ({)

gina says (18:47):
i remember when amy didnt want a pump at all!

AmyT says to (18:47):
Sort of like a chunky blackberry, I’d say.

jasonjayhawk says to (18:48):

gina: i’m the same way. Never pumped in my life, but now I want to try the Omnipod.

AmyT says to (18:48):
Yes, the Geeks will have that issue, Jason :D

landileigh says to saraknic (18:48):
my endo is trying to get me to think about a pump
*** (18:48):Welcome to OMNIPOD Chat , Betsy !

gina says (18:48):
the wire is annoying on my pump. but, if i didnt have it i couldnt open doors! llol

AmyT says to (18:49):
I have to say, compared to injecting: this is heavenly.

blondy2061h says to (18:49):
never had a problem with tubing honestly

landileigh says to saraknic (18:49):
and i wouldn’t have even looked at an omnipod if it wasn’t for amy’s love of hers

Jeff says to (18:49):
amy, ever use upper leg for pod location?

AmyT says to (18:49):
Not even on the toilet? Or changing your clothes? Or during sex? The tubing looks very cumbersome to me.

gina says (18:49):
have you ever used your butt like that pic on your blog!

saraknic says to (18:50):
huh?

sstrumello says to (18:50):
Disconnect the pump for sex … its exercise!

*** (18:50):Welcome to OMNIPOD Chat , -mikee !

AmyT says to (18:50):
Nope. The pod’s too chunky for my shapely legs, I’d say (LOL)

gina says (18:50):
scott lol

-mikee says to (18:50):
holyyy snipes

saraknic says to (18:50):
you disconnect for exercise?

gina says (18:50):
i do

shiksamaidel says to (18:50):
Amy, wht is your blog address?

-mikee says to (18:50):
wow were talking about sex?

gina says (18:50):
tonite i forgot to disconnect

AmyT says to (18:50):
You know, I’m told lots of kids wear the OP on their upper buttocks, but I think that would bother me.

gina says (18:50):
no mikkee

blondy2061h says to (18:51):
honestly, I guess it’s what you’re used to.

AmyT says to (18:51):
<a href=”http://www.diabetesmine.com”>www.diabetesmine.com</a>

-mikee says to (18:51):
man i dont want to get into that..i know what its like.

blondy2061h says to (18:51):
I’d find a pod you can’t remove more intrusive than a pump you can

blondy2061h says to (18:51):
during sex

blondy2061h says to (18:51):
and i take my pump off to change

-mikee says to (18:51):
oh i seeee

AmyT says to (18:51):
Mikee is getting interested now

gina says (18:51):
mikee is a teen

gina says (18:51):
lol

-mikee says to (18:51):
cuz i just got here and then all of a sudden were talking about this.

Jeff says to (18:51):
lol

gina says (18:51):
of course he is lol

jasonjayhawk says to (18:51):
Did anyone see on Omnipod’s site a form that you could submit so that they would send you a free non-working pod, so you can see what it looks like? I can’t find the link, but I know it’s out there.

-mikee says to (18:52):
heheh wow im embarrassed.

blondy2061h says to (18:52):
I’m totally gonna be all about the pod though if it gets smaller and lighter

landileigh says to saraknic (18:52):
i’d love to see that jason if you can find it!

blondy2061h says to (18:52):
yes, i requested one jason

sstrumello says to jasonjayhawk (18:52):
That would be of interest — seriously

AmyT says to (18:52):
Well, I like the fact that its on all the time. I don’t want to deal with on/off . But sometimes I wish the profile were flatter (during sex)

saraknic says to (18:52):
there was a thread in most of the forums about it

DiabeticDiva says to (18:52):
As long as it wasn’t one of the bloody returned ones

saraknic says to (18:52):

christine – what was it, you remember?

DiabeticDiva says to (18:52):
just kidding

jasonjayhawk says to (18:52):
HAHAHAA Diva! :D :D :D

blondy2061h says to (18:52):
the form on the wbesite

blondy2061h says to (18:52):
to request a sample pod

Jeff says to (18:52):
I thought mine would be here before todays chat

saraknic says to (18:52):
yeah

saraknic says to (18:53):

they are wondering around here :D
*** (18:53):landileigh quit the room

*** (18:53):Welcome to OMNIPOD Chat , landileigh !

-mikee says to (18:53):
brb

AmyT says to (18:53):
too bad, Jeff. You can email me when you get it

landileigh says to (18:53):
hopefully i’ll just talk to the room now

Jeff says to (18:53):
k

landileigh says to (18:53):
yeah!

*** (18:53):Welcome to OMNIPOD Chat , learning !

shiksamaidel says to (18:53):
(Tp)

jasonjayhawk says to (18:53):
<a href=”https://www.myomnipod.com/FreeDemoPod”>https://www.myomnipod.com/FreeDemoPod</a> – free demo pod. But no mentions if it’s bloody or not.

DiabeticDiva says to (18:54):
BWAHAHA

gina says (18:54):
WHEN YOU GUYS WANT TO CHAT WITH THE ROOM CLICK ON ALL USERS ON THE RIGHT HAND COLUMN ABOVE THE NAME LIST

Betsy says to (18:54):
Hey Amy-how long did it take you to figure out your basals?

AmyT says to (18:54):
Oh, and the other cool thing is that it’s a glucose meter and pump in one. I love less to schlep around.

blondy2061h says to (18:54):
Eww Jason

Lark says to (18:54):
My son is 5 and using the pod and we’ve found that an adult wrist band is the best way to keep the pod on his upper arm. Thought it might help someone out there…

Jeff says to (18:54):
I think the future is pod, smaller versions, better PDM’s, etc….

blondy2061h says to (18:54):
I want a sample pod that’s properly weighted

jasonjayhawk says to (18:55):
Jeff, remember when the future was an internal insulin pump? I read somewhere (Amy’s blog?) that it was d/c’ed in trials. It used U-400 insulin.

AmyT says to (18:55):
Not that long, a few weeks, I guess. But now I think my basals might need readjustment. That’s frustrating.

-mikee says to (18:55):
so are we STILL talking about this?

Jeff says to (18:55):
do you use the omni case that it comes with?

jasonjayhawk says to (18:55):
Do you modify your basals on your own accord, Amy? Or do you resist the
temptation?

AmyT says to (18:55):
They’re still working on the internal.

saraknic says to (18:55):
resist the temptation?

Johnboy says to (18:55):
Isn’t adjusting basals aways frustrating?

saraknic says to (18:55):
why resist?

jasonjayhawk says to (18:55):
Because if you modify your basals too much, you’ll never know what’s causing the changes.

AmyT says to (18:56):
hmm, I just modified my own IC ratio. I’m toying with the idea of changing the basals, too. Crazy!!

Betsy says to (18:56):
I’m on the POD and trying to do my basal tests…A1C wasn’t what I thought it was going to be.

jasonjayhawk says to (18:56):
How did you decide upon the initial basal settings?

AmyT says to (18:56):

Betsey, how are you doing the basal tests?

*** (18:56):Lark quit the room

saraknic says to (18:56):
you guys read Pumping Insulin, right?

jasonjayhawk says to (18:57):
Does anyone here have a “good” A1c and still want to go on a pump? I’ve never had over a 5.8% on MDI (10 tests/day, 8+ jabs/day).

*** (18:57):Welcome to OMNIPOD Chat , Max !

Betsy says to (18:57):
Overnight this time around. They think I’m going high when I’m not testing 8-10 times a day!

saraknic says to (18:57):
it has charts and stuff that help you test your basal

AmyT says to (18:57):
Our hero, Jason.

Jeff says to (18:57):
6.7 here

DiabeticDiva says to (18:57):
HAHA Amy.

saraknic says to (18:57):
5.8 here

jasonjayhawk says to (18:58):
*bows* ^o)

saraknic says to (18:58):
but i pump lol

landileigh says to (18:58):
6.2 here

*** (18:58):chelsea quit the room

landileigh says to (18:58):
and i am being asked by my endo to make a choice

AmyT says to (18:58):
I’m currently somewher between 5.9 and 6.9 depending on who you believe. Those on-site Metrika tests worry me…

saraknic says to (18:58):
with Apidra

saraknic says to (18:58):
i dont believe in those Amy

jasonjayhawk says to (18:58):
Has anyone heard the bad news that the Colonel died? They can’t decide how to cremate him……

AmyT says to (18:59):
Naw, me neither. That would make me 6.xxx

jasonjayhawk says to (18:59):
Regular….or extra-tastey-crispy.
*** (18:59):AllieB2 quit the room

AmyT says to (18:59):
Too many carbs, Jason

saraknic says to (18:59):
the only A1C i believe is a blood draw sent to a lab

AmyT says to (18:59):
I hear you
*** (18:59):DiabeticDiva quit the room

shiksamaidel says to (18:59):
6.9 after 53 years

jasonjayhawk says to (18:59):
I think I might actually be going hypo right now. Do’h.

AmyT says to (18:59):
Congrats!

gina says (19:00):
i waas 8 the last test

gina says (19:00):
ugh

saraknic says to (19:00):
jason – is that what is causing the bad jokes

Betsy says to (19:00):
Am I hearing that the ones they’ve done in the office might not have been true tests??

jasonjayhawk says to (19:00):
I think so, Sara. Normally I tell good jokes. *sigh*

gina says (19:00):
lol

AmyT says to (19:00):
Yes, Betsy, I’m not trusting those

AmyT says to (19:00):
Unless its that DCA 2000 machine
*** (19:00):Welcome to OMNIPOD Chat , szabel !

jasonjayhawk says to (19:01):
I wonder if any geeks have a DCA 2000 in their basement.

landileigh says to (19:01):
amy, do you find that you have less “garbage” than you would with a regular pump? i just see people with all that STUFF!

AmyT says to (19:01):
Well, I never used a regular pump, but there is minimal garbage with the OP, considering its usefulness.

Betsy says to (19:01):
Well, now I wonder if the couple of years I was 6.5 and lower wasn’t really my real A1C. They just started doing lab draws since I’ve been on the pump.

jasonjayhawk says to (19:01):
How about scars from the omnipump….see any evidence of those yet? Are the canulas made from steel or teflon?

AmyT says to (19:02):
And did you go up, Betsy?

AmyT says to (19:02):
No “evidence” of scars yet.

Betsy says to (19:02):
Oh yeaaaahh. 7.5 at last count.

AmyT says to (19:02):
Ugh.

AmyT says to (19:02):
I mean about going upwards.

gina says (19:02):
my doc wants me to start using my arms he thinks i have scar tissue

kristaw says to Betsy (19:03):
i just went on the paradigm 722 this afternoon

shiksamaidel says to (19:03):
Amy, how long are you using the pod?

blondy2061h says to (19:03):
I hate using arms

saraknic says to (19:03):

gina – this quickly/.

blondy2061h says to (19:03):
though I’ll use them once in awhile

saraknic says to (19:03):
?

Max says to (19:03):
Amy, have you thought of covering/giving more attention to the exciting LCT work with islet transplantation. The preliminary results are very, very encourging. BTW, am on the Omnipod when I learned about it on your marvelouis site. LOVE the pod.

blondy2061h says to (19:03):
i like legs, stomach, and side

Betsy says to (19:03):
Double ugh. I wear it on my lower belly and have no scars. Amy am I right that you use your…shoulder for a site?

AmyT says to (19:03):
Hey Guys, its past my dinnertime here, so I’ll have to log off soon. Any last questions?

AmyT says to (19:03):
Yes, shoulder. OK most of the time, with a few knock-offs…

jasonjayhawk says to (19:03):
It’s 9 PM and my wife is making me go to bed. It’s been so nice meeting you all. Keep up the great blogging, Amy. Thanks for tollerating my jokes, gina and sara. :)

saraknic says to (19:04):
nite jason

gina says (19:04):
haha no prob

AmyT says to (19:04):
Nite.

gina says (19:04):
i will post up this chat

*** (19:04):Welcome to OMNIPOD Chat , michelle5923 !

shiksamaidel says to (19:04):
nity

Betsy says to (19:04):
Thanks!

landileigh says to (19:04):
just to let you know amy, manny sent you, me and kelly an email
*** (19:04):jasonjayhawk left this room, entered another room

Jeff says to (19:04):
thanks

blondy2061h says to (19:04):
thanks amy
michelle5923 says to (19:04):
hello
*** (19:04):blondy2061h quit the room

gina says (19:04):
YOU CAN FIND THIS CHAT ON THE DTF HOMEPAGE TOMORROW

saraknic says to (19:04):
thanks amy!
*** (19:04):saychz quit the room
l
andileigh says to (19:04):
i think i’m just going to see the thing in person so i can decide. thank you amy!
*** (19:04):saraknic quit the room

AmyT says to (19:04):
Feel free to visit me any time at <a href=”http://www.diabetesmine.com”>www.diabetesmine.com</a>, and also send me any input, tips, etc to amy@diabetesmine.com
*** (19:04):Welcome to OMNIPOD Chat , lcgam !
gina says (19:04):
thanks amy

*** (19:05):grandmaberta left this room, entered another room

michelle5923 says to (19:05):
im a type 2 diabetic

sstrumello says to (19:05):
Good evening everyone!

landileigh says to (19:05):
night scott!

sstrumello says to (19:05):
Thanks, Amy!
*** (19:06):sstrumello quit the room
AmyT says to (19:06):
Thanks, everyone. Goodnight!
landileigh says to (19:06):
night amy
*** (19:06):Betsy quit the room
Jeff says to (19:06):
thanks Gina, Amy for the chat
*** (19:06):kristaw quit the room

landileigh says to (19:06):
thank you gina for the chat! i learned a lot!

Posted in CGMS, Community Leaders, Past Chat Transcripts | No Comments »

The Charmr Project

December 8th, 2009

*** (19:21):Welcome to The Charmr Project Chat , Mama Belle !
Mama Belle says to (19:22):
I’m early too. Just gonna wait
*** (19:23):Mama Belle quit the room
*** (19:24):Welcome to The Charmr Project Chat , bernfarr !
bernfarr says to (19:25):
Bernard here. I know I’m early but didn’t want to miss the fun.
gina says (19:26):
hey bernard
gina says (19:26):
how are u
*** (19:31):Welcome to The Charmr Project Chat , rjommp !
rjommp says to (19:31):
where’s the ballons and party hats have yeah missd me lol
rjommp says to (19:32):
website looks good Gina
*** (19:33):rjommp left this room, entered another room
*** (19:33):Welcome to The Charmr Project Chat , rjommp !
*** (19:34):Welcome to The Charmr Project Chat , 30ccsteven !
30ccsteven says to (19:34):
hello all
rjommp says to (19:34):
hello
30ccsteven says to (19:34):
have the night off, working days for a few days
rjommp says to (19:37):
I’m just in here for a little while. Wanted to let Gina and John know am still alive:P
bernfarr says to (19:39):
Gina, I’m well. My bike ride for Dr. Faustman’s research is this Sunday.
bernfarr says to (19:40):
On Monday I celebrate (!) the 35th anniversary of my Type 1 diagnosis. Yay, I’m still here!
rjommp says to (19:41):
Her research sounds hopeful. Don’years this Oct and still spry. lol
30ccsteven says to (19:42):
good to hear about your 35 years and still ticking.
rjommp says to (19:42):
Congrats on still being here
30ccsteven says to (19:43):
I often hope to make 5 more, and be glad to do more.
rjommp says to (19:43):
holy crap let me rewrite that don’t want you to feel young but have had type one 41 years 42 this Oct
bernfarr says to (19:44):
rjommp Good 4u. That gives me a stretch goal. lol. I’m looking 4ward 2 the Lilly medal in 15 years time
rjommp says to (19:44):
Are they making it in gold yet? lol
*** (19:46):Welcome to The Charmr Project Chat , Rachel Hinman !
rjommp says to (19:46):
Hello Rachel
Rachel Hinman says to (19:46):
hello!
*** (19:46):Welcome to The Charmr Project Chat , AllisonBlass !
rjommp says to (19:47):
Hi Allison
AllisonBlass says to (19:47):
Hey
bernfarr says to (19:47):
Hey Allison! U made it w/out running out of gas!
AllisonBlass says to (19:47):
LOL
AllisonBlass says to (19:47):
Oh that was a couple hours ago
AllisonBlass says to (19:48):
How is everyone?
rjommp says to (19:48):
doing well here
Rachel Hinman says to (19:48):
doing well here, too
bernfarr says to (19:48):
Pumped! Especially to hear more about the interest (if any) in Charmr.
Rachel Hinman says to (19:48):
yes – i have been looking forward to hearing your feedback
bernfarr says to (19:49):
Do u think a medical company might pick it up? Cause AdaptivePath is really in the concept space right?
Rachel Hinman says to (19:50):
well, our hope is to work with a medical company to pick it up
gina says (19:50):
hi everyone
Rachel Hinman says to (19:50):
since we posted the concept to our site, a number of companies have contacted us
bernfarr says to (19:50):
Can I tell u that I didn’t think the cover concept over the combined pump/cgm wouldn’t work.
bernfarr says to (19:51):
Because of the need to move the infusion set every few days, vs the need to move the CGM every week or so.
Rachel Hinman says to (19:51):
tell me more…
gina says (19:51):
hey Rachel! woow you are our earliest guest ever haha
*** (19:51):Welcome to The Charmr Project Chat , ArdRhi !
Rachel Hinman says to (19:51):
:-)
gina says (19:51):
officially we will start at 9pm for the others
bernfarr says to (19:51):
And because you can’t use the infusion set in the same place or you get tissue problems.
bernfarr says to (19:52):
Whereas you can leave a CGM sensor in place for 2 weeks (trust me) w/o any issues.
*** (19:52):Welcome to The Charmr Project Chat , mama2h !
Rachel Hinman says to (19:52):
where do you put the CGM sensor?
AllisonBlass says to (19:52):
Mel and I were talking about this on Saturday, and we both agreed that the overall machine was more important than having the two sets together.
bernfarr says to (19:53):
Currently mine is in my abdomen. Whereas my infusion set has been working across my butts for the last month or so!
Rachel Hinman says to (19:53):
interesting
gina says (19:53):
i had to move my pump site all the way up into my rib area because i had scar tissue problems
bernfarr says to (19:53):
I agree with Allison. Focus on the benefit of a combined controller/software.
*** (19:53):rjommp left this room, entered another room
Rachel Hinman says to (19:53):
that is good to know
*** (19:53):Welcome to The Charmr Project Chat , rjommp !
bernfarr says to (19:54):
Right and some parents are using the backs of arms for their kids because of the lack of available tissue elsewhere.
*** (19:54):Welcome to The Charmr Project Chat , Mama Belle !
mama2h says to (19:54):
We have no luck anywhere else but the arm
AllisonBlass says to (19:54):
The actual Charmr (not the site area) was what got people talking.
gina says (19:54):
bernard they wanted me to switch it there but i said NOOOO
rjommp says to (19:54):
catch yeah all later
bernfarr says to (19:54):
TTFN rjommp
mama2h says to (19:55):
Hailey has much better results there gina. We had terrible results on the abd and butt
*** (19:55):rjommp quit the room
Rachel Hinman says to (19:55):
so i am curious to hear what aspects of the controller were the most appealing to people
bernfarr says to (19:55):
My soapbox issue is that the software is key. Also the ability to get the data out of the system so you can load it onto sites like sugarstats, etc.
bernfarr says to (19:55):
Controller size was great.
gina says (19:55):
yea
bernfarr says to (19:56):
How about 2 different controllers with diff. form factors.
mama2h says to (19:56):
I liked the size and appearance
AllisonBlass says to (19:56):
I like being able to look at something and see stats right away
bernfarr says to (19:56):
One for configuration and control. The other for evenings when you might just want to carry a small one round with u?
mama2h says to (19:56):
That would be nice
Rachel Hinman says to (19:57):
when we conducted the research, i was very surprised at the size of current pumps
AllisonBlass says to (19:57):
they’re huge
AllisonBlass says to (19:57):
I have no idea what inside them…
mama2h says to (19:57):
They are huge :(
bernfarr says to (19:57):
Hah. Have u seen the size of the Dexcom? And you’re carrying that +pump +mobile phone. I need 3 hips.
gina says (19:57):
lol
*** (19:57):Welcome to The Charmr Project Chat , jon !
AllisonBlass says to (19:57):
yeah, I wore one. It’s ridiculous
mama2h says to (19:57):
lol
*** (19:58):Welcome to The Charmr Project Chat , scott m !
gina says (19:58):
the thing i really dont like is that huge patch looking thing on the body
AllisonBlass says to (19:58):
I like the idea of having the pump be the size of the resevoir… maybe a little longer for the computer chip.
mama2h says to (19:58):
poor Hailey’s pants sag now because of the pump and cell phone
*** (19:58):Welcome to The Charmr Project Chat , Abby-Dabby-Doo !
AllisonBlass says to (19:58):
and then having the conroller that I can put anywhere.
Rachel Hinman says to (19:58):
one girl we talked to is a marathon runner – she tried a pump for 6 months and gave up – it was just too difficult to carry it around and run with it
scott m says to (19:59):
Hey Room!
mama2h says to (19:59):
hi
Rachel Hinman says to (19:59):
hello!
30ccsteven says to (19:59):
hi
bernfarr says to scott m (19:59):
Agreed. It jiggles a lot. Why do they make the reservoirs round? If it were flatter, they might slim it all down. Hi Scott M.
*** (19:59):Welcome to The Charmr Project Chat , Ryanheroboy !
mama2h says to (19:59):
very true bernard
Abby-Dabby-Doo says to (20:00):
Greetings everyone!
bernfarr says to scott m (20:00):
Also. Why do we have to change both reservoir and infusion set at same time. If we had smaller reservoir, could change that daily and have a smaller pump?
gina says (20:00):
i love that the charmr looks like a jump drive
mama2h says to (20:00):
hi :D
*** (20:00):Ryanheroboy left this room, entered another room
scott m says to Abby-Dabby-Doo (20:00):
wow, I have no idea what Charmr is… I guess I’ll learn something new tonight
Mama Belle says to (20:00):
Hi Lanae
gina says (20:00):
well the whole poiont of the pump is to change it every three days
*** (20:00):Welcome to The Charmr Project Chat , sstrumello !
AllisonBlass says to (20:00):
bernerd, i don’t change them at the same time.
bernfarr says to scott m (20:00):
Hey sstrumello good 2cu
bernfarr says to scott m (20:00):
Allison, what do u do?
sstrumello says to (20:01):
Thx all … late day in the office, dinner and all that!
AllisonBlass says to (20:01):
well I accidentally bought too small of resevoir.
Abby-Dabby-Doo says to (20:01):
Scott your in for a treat tonight. I got supper done and the hubby is doing the dishes:D
AllisonBlass says to (20:01):
so I add new insulin about every 2-3 days and wear the set 3-4 days.
*** (20:01):Welcome to The Charmr Project Chat , Jill. !
gina says (20:01):
this is a chat about the charmr to see the video click here <a href=”http://www.adaptivepath.com/blog/2007/08/14/charmr-a-design-concept-for-diabetes-management-devices/”>http://www.adaptivepath.com/blog/2007/08/14/charmr-a-design-concept-for-diabetes-management-devices/</a>
mama2h says to (20:01):
No fair Lanae! Can I borrow him ;)
Abby-Dabby-Doo says to (20:01):
This is a one time deal, and you know I’ll have to pay for it later
mama2h says to (20:02):
lol
bernfarr says to scott m (20:02):
I really liked the size of the charmr controller. And it looked good. Why does diabetes stuff have to look like a Model T Ford? Any color as long as it’s black.
ArdRhi says to (20:02):
I’m not sure why I was invited…I’m not insulin-dependent…*scratching head*
Abby-Dabby-Doo says to (20:02):
How are you Heidi?
gina says (20:02):
maybe they can make the charmr look like the new ipod
gina says (20:02):
rachel are you still with us?
Jill. says to (20:02):
what is charmr?
Rachel Hinman says to (20:02):
i am
mama2h says to (20:02):
No kidding! Pink is a must! Purple would be awsome, and not that dark purple, I am talking bright
Mama Belle says to (20:02):
Good, you?
Rachel Hinman says to (20:02):
so color is important – the external color of the product
Rachel Hinman says to (20:02):
that is good to know
Mama Belle says to (20:03):
PINK!!!
bernfarr says to scott m (20:03):
Making it more fun is important especially 4 kids.
mama2h says to (20:03):
It is for my 11 yr old!
gina says (20:03):
jill click here <a href=”http://www.adaptivepath.com/blog/2007/08/14/charmr-a-design-concept-for-diabetes-management-devices/”>http://www.adaptivepath.com/blog/2007/08/14/charmr-a-design-concept-for-diabetes-management-devices/</a>
Jill. says to (20:03):
k thanx
Abby-Dabby-Doo says to (20:03):
Tired, and we still have bath, site change, and getting stuff ready for tomorrow.
sstrumello says to (20:03):
OK, the kids colors don’t work for me, especially when I wear a business suit. Not everyone with type 1 is 8 years old!
gina says (20:03):
lol
mama2h says to (20:03):
If they have to wear it all of the time it needs to be “cool”
AllisonBlass says to (20:03):
*Variety*
Abby-Dabby-Doo says to (20:03):
Pink would look cool with a business suit!
bernfarr says to sstrumello (20:04):
My daughter (not a diabetic) wonders why the test strips themselves don’t come in diff. colors.
mama2h says to (20:04):
Fusia :D
Abby-Dabby-Doo says to (20:04):
Use it as a tie clip!
AllisonBlass says to (20:04):
One size fits all diabetes supplies is so 20th century.
Rachel Hinman says to (20:04):
our thought was that a lot of the customizaiton/color choices could be done on the screen
bernfarr says to (20:04):
Sorry got locked into talking with sstrumello only. My daughter (not a diabetic) wonders why the test strips themselves
don’t come in diff. colors.
mama2h says to (20:04):
that would be awsome too!
sstrumello says to (20:04):
I want this stuff to take a minimum of abdominal real estate!
*** (20:04):ArdRhi quit the room
Rachel Hinman says to (20:04):
the exterior of the product could be somewhat neutral but people could customize the ambient display -
mama2h says to (20:05):
yeah, make the set itself smaller
gina says (20:05):
yea the infusion set looks huge with that big patch
mama2h says to (20:05):
make it clear!
gina says (20:05):
not very nice when you are out in your bathing suit
Abby-Dabby-Doo says to (20:05):
And on a child, it would look even bigger
mama2h says to (20:05):
both the pump and the set
*** (20:05):Welcome to The Charmr Project Chat , t1p !
Rachel Hinman says to (20:05):
yeah – the infusion “soft fleshy thing” used in the movie on our site is big – too big
gina says to Rachel Hinman (private) (20:05):
rachel press the B to make your answers bold
gina says (20:06):
way too big
mama2h says to (20:06):
Oh yeah, I forgot about that! That would be great, my only issue is it would be hard to match every skin tone.
bernfarr says to (20:06):
I’d love to see software that would show bg readings and insulin taken (plus user comments) on one graph. Is that part of concept?
Rachel Hinman says to (20:06):
we used the strapless bra inserts that women use for strapless dresses as a model
Rachel Hinman says to (20:06):
the ones that “stick” to the skin
*** (20:07):Welcome to The Charmr Project Chat , duckfeetep !
Rachel Hinman says to (20:07):
we liked the material, but the scale was too big
sstrumello says to (20:07):
Another thing I would add is that the adhesives need to be top-of-the-line. When I wore my pump, I had to prep my sites with Skin-Tac H to get them to stay on after 1 shower.
AllisonBlass says to (20:07):
Oh.. so that’s what that was!
gina says (20:07):
i think its better to just keep it the way they usually look
Rachel Hinman says to (20:07):
yeah?
AllisonBlass says to (20:07):
Gary Scheiner had the idea of making sets flesh colored.
*** (20:07):Mama Belle quit the room
*** (20:07):Welcome to The Charmr Project Chat , Mama Belle !
AllisonBlass says to (20:07):
You know how they are usually white?
mama2h says to (20:07):
we prep the heck out of sites with two different wipes :(
AllisonBlass says to (20:07):
If you made them beige they might be less noticeable…
*** (20:08):Mama Belle quit the room
mama2h says to (20:08):
I would love to see them clear so I don’t have to worry about matching flesh tones
gina says (20:08):
the only time i had a site pop out was in the summer when the air at work was broken
gina says (20:08):
yea i agree mama
sstrumello says to AllisonBlass (20:08):
Yes, but whose flesh color … we live in a diverse society!
mama2h says to (20:08):
exactly
AllisonBlass says to (20:08):
I’m not the one who suggested it…
Rachel Hinman says to (20:08):
that is true, too
bernfarr says to (20:08):
Well the groovy patches helped (I think).
AllisonBlass says to (20:08):
Geez…
mama2h says to (20:08):
lol
Abby-Dabby-Doo says to (20:08):
I agree on the groovy patches
gina says (20:08):
clear is the way to go!
*** (20:08):Welcome to The Charmr Project Chat , chelsea !
Rachel Hinman says to (20:08):
interesting
gina says (20:08):
for me at least
*** (20:08):Welcome to The Charmr Project Chat , stacey !
Abby-Dabby-Doo says to (20:09):
Have more than one choice is the way to go
sstrumello says to gina (20:09):
Clear works for most everyone, I think
*** (20:09):Welcome to The Charmr Project Chat , Mama Belle !
mama2h says to (20:09):
could offer tones and clear, imho we would go for clear
stacey says to (20:09):
have I missed anything??
Abby-Dabby-Doo says to (20:09):
Mama B what are you doing goin in and out?
daddy says to (20:09):
too many choices may affect manufacturing costs
t1p says to scott m (20:09):
but isnt the point to hise it then clear wouldnt work?
gina says (20:09):
maybe the back of the charmr can be like a medic alert too
Abby-Dabby-Doo says to (20:09):
Haven’t missed too much
Mama Belle says to (20:09):
But flesh tones vary by race
bernfarr says to (20:09):
Yep. More colors, more configuration (with default easy approach) is best of all. More infusion set lengths, more more. I want it ALL:)
mama2h says to (20:09):
that would be a good idea gina
daddy says to (20:10):
so what is today’s topic?
Rachel Hinman says to (20:10):
so i am curious to know what you guys currently use – and the problems you have with what you currently use
stacey says to (20:10):
my son wants colored tubing.. to match the insets
bernfarr says to daddy (20:10):
daddy it’s the charmr
gina says (20:10):
daddy click here <a href=”http://www.adaptivepath.com/blog/2007/08/14/charmr-a-design-concept-for-diabetes-management-devices/”>http://www.adaptivepath.com/blog/2007/08/14/charmr-a-design-concept-for-diabetes-management-devices/</a>
daddy says to (20:10):
but i hought we were talking about the future?
Abby-Dabby-Doo says to (20:10):
Can’t get approval on CGMS- due to age (thanks FDA)
daddy says to (20:10):
sure, but what about the charmr are we talking about?
bernfarr says to daddy (20:10):
<a href=”http://www.adaptivepath.com/blog/2007/08/14/charmr-diabetes-management-research-%e2%80%94-theres-no-vacation-from-diabetes/”>http://www.adaptivepath.com/blog/2007/08/14/charmr-diabetes-management-research-%e2%80%94-theres-no-vacation-from-diabetes/</a>
Mama Belle says to (20:10):
The pump is too big and bulky.
gina says (20:10):
i use the paradigm 512
mama2h says to (20:10):
yes, too big and ugly
Mama Belle says to (20:10):
We use Cozmo
gina says (20:10):
its huge
Mama Belle says to (20:11):
But we love the intuiticve menus
Abby-Dabby-Doo says to (20:11):
MM 522
stacey says to (20:11):
Cozmo here too…
Mama Belle says to (20:11):
er, intuitive
mama2h says to (20:11):
we have mm 722 w/cgms and it is just ugly and not fun at all
daddy says to (20:11):
but the existing companies are continuing to make stuff smaller, so what is interesting about that?
bernfarr says to (20:11):
Cozmo is nice because of extra features. But I’m using an aged MM512
gina says (20:11):
i dont mind the sets on my body i just cant stand wearing the machine
daddy says to (20:11):
all tetchnology will get smaller over time
*** (20:11):Welcome to The Charmr Project Chat , chuck27 !
bernfarr says to (20:11):
daddy there are limits because of the size of the reservoir and motor to drive it.
mama2h says to (20:11):
yes, but the pump companies are just soo far behind the current technology
scott m says to Mama Belle (20:11):

MDI… I feel behind the curve:P
Mama Belle says to (20:12):
But if we can make computers the size of our plam, can’t we make a smaller pump
daddy says to (20:12):
there are nano sized pumps that are coming
Abby-Dabby-Doo says to (20:12):
I’m interested in how LOUD the alarms re going to be.
daddy says to (20:12):
mems technology and other types of insulin.
daddy says to (20:12):
i know of several companies working on thhose
stacey says to chuck27 (20:12):
but how much insulin can a nano pump hold . I have a 15 year old who uses over 100U a day
bernfarr says to (20:12):
I think the big delays is because of need to clear FDA which means trials and results and long time periods.
mama2h says to (20:12):
and navigator was coming out last christmas. I am sick of hearing that it is “coming soon”
sstrumello says to daddy (20:12):
They have made the pumps smaller by cutting the reservoir sizes, not reducing the mechanics inside!
Rachel Hinman says to (20:12):
who do you guys feel is a progressive medical device company?
bernfarr says to (20:12):
But nano pumps could use highly concentrated insulin.
bernfarr says to (20:13):
Agamatrix , nice new meters.
daddy says to (20:13):
they have reduces teh mechanics (e.g. omnipod), but also other MEMS technologies (mm sized pumps)
sstrumello says to bernfarr (20:13):
I have an Agamatrix meter, but no test strips yet!!
mama2h says to (20:13):
never heard of it
AllisonBlass says to (20:14):
Omnipod is not that small…
AllisonBlass says to (20:14):
And you have to carry around the receiver, so you’ve just added onto it practically.
Abby-Dabby-Doo says to (20:14):
Medical device company?! We just go through the pump company.
mama2h says to (20:14):
at least it is tubeless
Rachel Hinman says to (20:14):
okay – a progressive pump company?
daddy says to (20:14):
look into MEMS and nano, there are very tiny pumps that are going into next gen systems (they are only a few MMs in size)
Abby-Dabby-Doo says to (20:14):
MM
gina says (20:14):
minimed
mama2h says to (20:14):
MM has the cgms, imho they are the front runners
AllisonBlass says to (20:15):
Minimed would be the top guys, I think.
bernfarr says to (20:15):
Not MM. They are the elephant. Maybe one of the newer ones.
Mama Belle says to scott m (20:15):
I dunno, I think Cozmo has put a lot into their pumps that MM doesn’t think of
mama2h says to (20:15):
they at least try to make it better with the skins and such
daddy says to (20:15):
<a href=”http://www.diabetesnet.com/diabetes_technology/insulinpumps_debiotech.php”>http://www.diabetesnet.com/diabetes_technology/insulinpumps_debiotech.php</a>
bernfarr says to (20:15):
Dexcom is at least up to MM by now. IMO
AllisonBlass says to (20:15):
Honestly, go with the one who seems the most willing to listen to your feedback, our feedback and make this thing work.
AllisonBlass says to (20:15):
If Minimed jumps all over it, who are we to say no?
daddy says to (20:15):
everything on the market is five years old due to FDA etc. new technologies are light years ahead, in the works.
*** (20:16):Jill. quit the room
daddy says to (20:16):
AllisonBlass you are right, it’s about the service really
*** (20:16):Welcome to The Charmr Project Chat , Jill. !
sstrumello says to mama2h (20:16):
Medtonic Minimed made a mistake by abandoning the luer-lock connectons to the infusion set and pump, you are obliged to buy Minimed’s sets, and I liked Disetronic (Accu-Check)’s sets better!
bernfarr says to (20:16):
What about Nilimedix? <a href=”http://www.nilimedix.com/index.html”>http://www.nilimedix.com/index.html</a>
Abby-Dabby-Doo says to (20:16):
In the end, I agree it’s service.
Rachel Hinman says to (20:16):
tell me more about the service
*** (20:16):Jill. quit the room
gina says (20:16):
i think MM has really great customer service
mama2h says to (20:16):
bbl kids
gina says (20:17):
if something goes wrong you get a new pump next day
sstrumello says to mama2h (20:17):
Animas used to have great service, too … I can’t speak for it currently
*** (20:17):chuck27 quit the room
scott m says to Mama Belle (20:17):
I’m impressed with the companys who will overnight a pump for replacement/repair issues. I think MiniMed does that as for as I know
gina says (20:17):
You can call them anytime
daddy says to (20:17):
great example bernard. so there are at least two interesting tiny pumps getting worked on
bernfarr says to (20:17):
MM owns the market at present. You need to look at the competitors to see where the innovation is. You won’t find it at MM.
Abby-Dabby-Doo says to (20:17):
Someone there that isn’t “bothered by” your call no matter what time of the day. Or someone acting like it’s your fault or not thinking your stupid for not understanding something. Willing
*** (20:17):Welcome to The Charmr Project Chat , sue !
sstrumello says to (20:17):
Their billing, on the other hand, was a nightmare!
Rachel Hinman says to (20:17):
well that is another quesiton i have
Rachel Hinman says to (20:18):
are most of your pumps covered by insurance?
bernfarr says to (20:18):
Any company will overnight something. Cozmo did that for me (extra infusion sets) and I was just trying it out.
gina says (20:18):
billing? i have never had a problem
AllisonBlass says to bernfarr (20:18):
I think considering MM is the first integrated CGMS/pump, that they are quite innovative.
daddy says to (20:18):
only pumps on formulary are covered
gina says (20:18):
my pump was fully covered
AllisonBlass says to bernfarr (20:18):
I disagree that MM is oldfashioned or at all a mountain that can’t be moved.
daddy says to (20:18):
MM is the most advanced on the market right now
Mama Belle says to scott m (20:18):
It varies from insurance to insurance and plan to plan
Abby-Dabby-Doo says to (20:18):
We didn’t have a problem- but for others it’s a battle.
*** (20:18):Welcome to The Charmr Project Chat , reese !
Abby-Dabby-Doo says to (20:18):
CGMS- is going to be a problem
bernfarr says to (20:18):
Coverage varies. Most pumps are covered by many plans. Some issues (I hear) with OmniPod.
sue says to (20:18):
We have minimed with CGMS..it’s awesome
Mama Belle says to scott m (20:18):
Our Cozmo was covered 100%
sstrumello says to gina (20:19):
They invoiced insurance, but didn’t code it right, and I’d get bills for infusion sets and supplies for $1,000. I guess it depends on your insurance!
*** (20:19):chelsea quit the room
Mama Belle says to scott m (20:19):
But other’s only get 80% coverage, it depends
bernfarr says to (20:19):
But CGMS is a different story. Insurance companies are looking for efficacy results.
daddy says to (20:19):
so do you guys like you CGMSs?
gina says (20:19):
what insurance do you have?
jon says to (20:19):
Kaiser would only cover Minimed or Animas
sue says to (20:19):
We’re in a study.
stacey says to (20:19):
Ins companies are just lloking not to pay
daddy says to (20:19):
Sue what kind of study
Mama Belle says to scott m (20:19):
Exactly
Rachel Hinman says to (20:19):
we spoke with a diabetic educator from kaiser
bernfarr says to (20:19):
CGMS are awesome. And my wife likes it too!
Abby-Dabby-Doo says to (20:19):
Correct, BUT anything NEW insurance is slow, you have to prove that it will lower there costs in the future
Rachel Hinman says to (20:19):
and she said that they only cover 1-2 kinds of pumps
Abby-Dabby-Doo says to (20:19):
HMO
sue says to (20:19):
Sensor is great.
daddy says to (20:20):
how did CGMS change things for you?
bernfarr says to (20:20):
Even if it is big and bulky. I’ve got Aetna, they’re not covering it universally yet.
gina says (20:20):
bern your pump or cgms
sstrumello says to Abby-Dabby-Doo (20:20):
What about avoiding a hypo-induced ambulance trip? Thats got to be at least a few hundred dollars?!
Abby-Dabby-Doo says to (20:20):
Anyone have an idea how much the charmr is going to run?
jon says to (20:20):
i really like the idea of adding features to the pumps such as mp3 players and video games
bernfarr says to (20:20):
CGMS made a lot of things easier. Can ‘test’ b4 driving just by looking. My wife can test while I drive by looking.
gina says (20:21):
thats really important
sue says to (20:21):
exactly
daddy says to (20:21):
cool bernfarr. is it accurate enought in your experience to do that?
bernfarr says to (20:21):
Pump is fully covered. Dexcom is not. I’ve yet to start the paperwork.
gina says (20:21):
pump companies should make the pumps affordable if your insurance cant cover
gina says (20:21):
i know thats probably not possible
bernfarr says to (20:21):
Absolutely. Unless it’s moving rapidly its remarkably accurate.
daddy says to (20:21):
that’s very good to hear
daddy says to (20:22):
so you do less fingerrstticks now?
Rachel Hinman says to (20:22):
cost? is cost important? would you pay for a cooler pump like the charmr if your insurance compay didn’t cover it or only partially covered it?
sue says to (20:22):
not always accurate..still need fingersticks but trending up and down you get alarms and can tweak basals
daddy says to (20:22):
do you does off of it?
reese says to (20:22):
do you feel better using it bernard?
bernfarr says to (20:22):
Not enough scale yet to reduce costs of these devices.
AllisonBlass says to bernfarr (20:22):
I probably would not pay for another pump if it was not covered.
daddy says to (20:22):
cost is everything
AllisonBlass says to bernfarr (20:22):
It just wouldn’t be worth it.
jon says to (20:22):
i would pay extra for a cooler pump for my kid
gina says (20:22):
cost is very important a mm pump costs i think like 6000 now
Mama Belle says to scott m (20:22):
I wouldn’t buy it if insurance didn’t cover it. D is expensive!
daddy says to (20:22):
yeah, i don’t have 5k laying around!
*** (20:22):Welcome to The Charmr Project Chat , t1p3285 !
bernfarr says to (20:22):
I wouldn’t pay extra 4 cool. I’d pay extra for convenience or data interpretation or better control.
gina says (20:22):
yea
Mama Belle says to scott m (20:22):
exactly bern
daddy says to (20:22):
bernfarr what do you see out there that is innovative?
scott m says to (20:22):
I only have acces to pumps that will be covered by insurance personally
sue says to (20:23):
ok, what’s the charmr
gina says (20:23):
sue click here <a href=”http://www.adaptivepath.com/blog/2007/08/14/charmr-a-design-concept-for-diabetes-management-devices/”>http://www.adaptivepath.com/blog/2007/08/14/charmr-a-design-concept-for-diabetes-management-devices/</a>
sue says to (20:23):
thanks
AllisonBlass says to (20:23):
It’s a pump that’s currently in concept.
bernfarr says to (20:23):
daddy not a whole lot of innovation right now. Just incremental improvements.
Mama Belle says to scott m (20:23):
So by the time it got approval would the tech be outdated?
bernfarr says to (20:23):
But I expect we’ll see more innovation within 2-3 years as next gen devices arrive.
daddy says to (20:24):
everything is outdated by the time it gets approved ;)
*** (20:24):Welcome to The Charmr Project Chat , macksdaddy65 !
AllisonBlass says to (20:24):
Something is only outdated if something newer is available…
Abby-Dabby-Doo says to (20:25):
I don’t like it that my insurance won’t let me get something else for 4 years. It really makes you think before you get something, because something better might come out.
*** (20:25):stacey quit the room
daddy says to (20:25):
well, anything on the market is five years old, by definition of approval process. so it’s not like an ipod that changes every six months.
gina says (20:25):
abby but that is the same with anything even a new computer
AllisonBlass says to (20:25):
Since everything takes so long to be approved, I don’t think “everything” is outdated right away.
daddy says to (20:25):
yeah, insurance sure waits too!
sstrumello says to AllisonBlass (20:25):
There’s outdated by better technology, but most stuff is outdated by minor, insignificant design changes
daddy says to (20:25):
not true, compute dev cycle is months, not years
Abby-Dabby-Doo says to (20:25):
But we should be able to add to it like software or upgrade the memeory- not have to buy a whole new piece
AllisonBlass says to (20:25):
It’s not the same with diabetes.
bernfarr says to (20:25):
Rachel I think we all try to get the most out of what we’re using. Partly because insurance never pays for it all. Hence using 7-day CGM sensors for as long as possible.
AllisonBlass says to (20:26):
I agree in most tech fields, but not with diabetes…
sstrumello says to AllisonBlass (20:26):
Think about glucose meters, most strip designs are over a decade old now
daddy says to (20:26):
exactly sstrumello
AllisonBlass says to (20:26):
What makes that outdated though?
t1p3285 says to scott m (20:26):
yeah but if theres a flaw w/the newest computers it cant potentially kill you
jon says to (20:26):
you should be able to download alarm tones like you can with ring tones on a phone
daddy says to (20:26):
compare agamatrix technology and accuracy to one touch ultra for example
daddy says to (20:26):
agamatrix uses advanced DSP technology for more accuracy
daddy says to (20:26):
technological advance
daddy says to (20:27):
(same guys who invented the one touch by the way)
sstrumello says to AllisonBlass (20:27):
Nothing, I’m agreeing with you, most are not outdated, they merely look newer or have minor changes
gina says (20:27):
right
*** (20:27):t1p quit the room
bernfarr says to (20:27):
Plus agamatrix has done a nice job with user experience on the meter AND on the software. See my YouTube video. Even nice test strip design.
Abby-Dabby-Doo says to (20:27):
Like on the MM it doesn’t show IOB- couldn’t you buy software to make it do that
Mama Belle says to scott m (20:27):
So with a feature like a touch screen, how would you prevent accidentally accessing and changing menus or dosing insulin?
daddy says to (20:27):
yeah they are doing a good job
Rachel Hinman says to (20:27):
i know there are a lot of challenges that have some up – cost, size/bulkiness, accuracy…i’m curious to know as a designer, if there was one thing we could change to make managing your diabetes easier, what would it be?
daddy says to (20:28):
cure!
macksdaddy65 says to (20:28):
how many people in this chat are using the hot new agamatrix technology?
gina says (20:28):
after a cure…
bernfarr says to (20:28):
Reduce the amount of time we spend every day trying 2 control it.
gina says (20:28):
haha
Abby-Dabby-Doo says to (20:28):
personal choices
gina says (20:28):
bern yes
daddy says to (20:28):
yeah easier data management and more saffety. and accuracy.
bernfarr says to (20:28):
I’m use agamtrix as my backup. Have 2 use OneTouch because of my Dexcom.
Mama Belle says to scott m (20:28):
“Reduce the amount of time we spend every day trying 2 control it.”
Exactly
sue says to (20:28):
artificial pancreas
scott m says to (20:28):
Wireless control of pump is exciting to me…
sstrumello says to Rachel Hinman (20:28):
All the stuff we have to carry around to manage it 24/7/365. We guys have to carry around a diabetes purse, not very cool.
Mama Belle says to scott m (20:28):
CGMS and infusion set in one site
gina says (20:29):
lol
bernfarr says to (20:29):
Look most devices now just help us in short term.
sue says to (20:29):
yeah mama
bernfarr says to (20:29):
What’s my blood sugar right now. What do I need to take for this meal.
bernfarr says to (20:29):
But where are the devices/software telling me what happens every other day when I exercise, or every time I’m sick, or have my period.
30ccsteven says to (20:29):
but we have the help!
sue says to (20:29):
ditto
bernfarr says to (20:29):
We need stuff that helps witht he longer term also.
bernfarr says to (20:30):
30ccsteven what help?
Mama Belle says to scott m (20:30):
yes!
Rachel Hinman says to (20:30):
i’m curious also o know hat aspect of the charmr concept was especially appealing to you guys
*** (20:30):Mama Belle quit the room
*** (20:30):Welcome to The Charmr Project Chat , Mama Belle !
t1p3285 says to (20:30):
the size
daddy says to (20:30):
i like the touch screen
t1p3285 says to (20:30):
or lack of
daddy says to (20:30):
and it’s pretty looking
*** (20:30):sue quit the room
Mama Belle says to (20:30):
Size
Abby-Dabby-Doo says to (20:30):
size
Abby-Dabby-Doo says to (20:30):
beat ya
scott m says to (20:30):
I like the compact size of the charmr and expecially the ease of use/user interface
gina says (20:30):
size
bernfarr says to (20:30):
Size and concept of integrated control interface. Tho I guess the MM has that in a way.
30ccsteven says to (20:30):
the change that has allowed us to enjoy the benifits of better BS control.
daddy says to (20:30):
has anyone used it? is it really easier?
AllisonBlass says to (20:31):
It looked like something I could tuck into my bra and wouldn’t at all ever show.
AllisonBlass says to (20:31):
even with something lowcut and sleezy!
AllisonBlass says to (20:31):
:-)
bernfarr says to (20:31):
Allison, you’re a bad diabetic ;-)
Rachel Hinman says to (20:31):
it’s stil a concept – so no one has used it *yet*
AllisonBlass says to (20:31):
I am not!
Abby-Dabby-Doo says to (20:31):
I hope the alarm can be turned loud. That would be great for kids sleeping in the next room or heavy sleepers
Mama Belle says to (20:32):
YES!!!
sstrumello says to Rachel Hinman (20:32):
Just sleazy … LOL!
daddy says to (20:32):
well i don’t see what is so innovative about it really – other companies already are working on compined pump cgms
AllisonBlass says to (20:32):
:-(
AllisonBlass says to (20:32):
hehehe
bernfarr says to (20:32):
I think you need an audio output for the alarm. That would help with kids.
Abby-Dabby-Doo says to (20:32):
how about loud and vibrate at the same time
bernfarr says to (20:32):
Abby-Dabby the Dexcom has that. And it’s annoying sometimes.
gina says (20:32):
and a parental remote
scott m says to (20:32):
Vibrating alarms are a must
Abby-Dabby-Doo says to (20:32):
at 4am I wouldn’t be cursing it
Rachel Hinman says to (20:33):
i am also curious to hear how you guys currently keep track of your data – is it stored in your pump? do you write things down?
bernfarr says to (20:33):
More customization about when it’s loud and when it reminds you and how often it tells you that you’re high.
Rachel Hinman says to (20:33):
keep a journal?
Mama Belle says to (20:33):
Stored
t1p3285 says to (20:33):
maybe I missed this part but any thought to given to an alarm system of the unit being separated from the person?
Abby-Dabby-Doo says to (20:33):
I write EVERYTHING done
scott m says to (20:33):
excell spreadsheet
bernfarr says to (20:33):
Downloaded from my 3 devices onto my PC.
AllisonBlass says to (20:33):
download… sometimes….
gina says (20:33):
i write down first then put it into the computer
bernfarr says to (20:33):
But my endo doesn’t use the software.
sstrumello says to (20:33):
We need standardized data outputs, that can be merged together from multiple sources
Abby-Dabby-Doo says to (20:33):
I’d like to wake up and see her number not so see what her number is.
Mama Belle says to (20:33):
Yes, we download all of our devices into seprarte programs … annoying!
jon says to (20:33):
writing it all down sucks
Abby-Dabby-Doo says to (20:33):
*not get out of bed to go see her number
bernfarr says to (20:34):
Stuff like <a href=”http://SugarStats.com”>http://SugarStats.com</a> is going to be the future there I think.
daddy says to (20:34):
we need systems that are complete and cohesive. so far minimed is closest, but others are working to that also.
jon says to (20:34):
the minimed pump keeps track of most data
bernfarr says to (20:34):
jon yes it does. But you ahve to use the lousy BD meter to get at it. :-)
macksdaddy65 says to (20:34):
so I guess that’s only one person using the hot new agamatrix meter and only part time? and that is the newest and most innovative meter. hmmm?
Rachel Hinman says to (20:34):
so what do you guys do with the data your write down/put in excel/download
jon says to (20:34):
but downloading minimed is a pain
Rachel Hinman says to (20:34):
how is that data helpful to you?
Abby-Dabby-Doo says to (20:34):
but I don’t want to have to push buttons to see the IOB
daddy says to (20:34):
sure it is
daddy says to (20:34):
it’s not automatic
sstrumello says to (20:35):
Can we say comma separated values?!
bernfarr says to (20:35):
Rachel data is not much help to me, because I can’t analyse it. And you can only look at pretty graphs for so long. :-)
jon says to (20:35):
the diabetes educator downloads the pump to see how my son has been doing and make adjustments
Abby-Dabby-Doo says to (20:35):
Can’t it pick out a trend for you that’s out of range instead of having to look for it
Abby-Dabby-Doo says to (20:35):
Same here Jon
scott m says to (20:35):
I use the data for averages/ patterns/ overall record for future comparison
Abby-Dabby-Doo says to (20:36):
Did I get thrown off?
sstrumello says to Abby-Dabby-Doo (20:36):
I agree, the averages are useless, and you need to scroll through them to give us our last reading!
reese says to (20:36):
i don’t log as my outcomes are not that consistent, to many variables
daddy says to (20:36):
yeah, most of the stats are not meaningful
Mama Belle says to (20:36):
I use trends all the time to figure out adjustments
Rachel Hinman says to (20:36):
i am wondering if they could be more meaningul
jon says to (20:36):
the averages might be more useful to those with type 2, but are usuless for type 1
Rachel Hinman says to (20:36):
meaningful, i mean
Rachel Hinman says to (20:37):
if there was a way to visualize the information better
scott m says to (20:37):
When I test alot during the day I feel the graphs I get from the data entry is very helpful. Like seeing trends without a CGMS
Rachel Hinman says to (20:37):
i agree – you can only look at graphs for so long
reese says to (20:37):
but it is hard to tell if the adjustment should be to the carbs, the bolus, or the basal, or the fact you used the stairs versus the elevator
daddy says to (20:37):
right, too many variables
sstrumello says to (20:37):
Perhaps having a slope of the increase or decrease in CGM values, as the actual value is less important than how fast it is changing
daddy says to (20:37):
very difficult to do real analysis w/o enought information
jon says to (20:38):
if the pump could wirelessly connect to the computer or printer, it would be easier to print out the info
Mama Belle says to (20:38):
I agree that there needs to be some way to integrate lifestyle info into the results. If you can’t see which BGs or setting coordinate with hormones or stress then you can’t use that information to make changes in the future
Abby-Dabby-Doo says to (20:38):
I would like school time on there. I can control what time PE is. Sorry I know this is usless for adults.
bernfarr says to (20:38):
Without helpful analysis software, the data quantity will increase and our ability to use it meaningfully will go down. One of the things in my paper on the need for diabetes data standards. <a href=”http://tinyurl.com/33ewtt”>http://tinyurl.com/33ewtt</a>
reese says to (20:38):
now the cgms giving me realtime data would be a gift and something I could address immediately
jon says to (20:38):
minimed pumps already communicate wirelessly with the bd meter, so it shouldn’t be hard to connect them to a computer
gina says (20:38):
sorry guys and menstrual cycles
Abby-Dabby-Doo says to (20:38):
The BD meter is JUNK!
Abby-Dabby-Doo says to (20:38):
IMO
jon says to (20:39):
yes and i think bd has been discontinued
jon says to (20:39):
i don’t know how minimed is handling that
bernfarr says to (20:39):
Yep. BD will be replaced with OneTouch next year.
bernfarr says to (20:39):
Overseas will be replaced by Bayer meter.
Abby-Dabby-Doo says to (20:39):
Thank goodness. It doesn’t even have a back light for goodness sakes
jon says to (20:39):
i think the meters could be improved too
macksdaddy65 says to 30ccsteven (20:39):
I think meters have been improved
Rachel Hinman says to (20:39):
so how many of you would get a CGMS if they were more accurate?
Abby-Dabby-Doo says to (20:40):
Raising hand
daddy says to (20:40):
ultra2 is improved ove ultra (data marking)
Mama Belle says to (20:40):
I would get one now if insurance would cover it
bernfarr says to (20:40):
I have one and I’d replace it if it were more accurate and needed less feeding (sync wiht a meter).
daddy says to (20:40):
agamatrix is improved
jon says to (20:40):
there was a pocket pc that had a glucose meter attachment, maybe they could do that with a cell phone or pocket calculator
macksdaddy65 says to 30ccsteven (20:40):
cgms is about reimbursement first and usability (simplicity) second
scott m says to (20:40):
, if insurance would help pay for it
sstrumello says to (20:40):
I like the backlight feature on meters, I’m thinking Freestyle Flash, for example, with lighting of the test strip as well … great for using in movie theaters or in the dark
bernfarr says to (20:40):
How about a system (CGM/Pump) that has a bluetooth interface and have the controller software on your mobile phone?
daddy says to (20:40):
doesn’t ultra2 have a backlight now? or no?
Abby-Dabby-Doo says to (20:40):
We can ONLY use Lifescan strips PER insurance.
Mama Belle says to (20:41):
It has back light but nothing for the strip
Abby-Dabby-Doo says to (20:41):
Yes Ultra2 does
jon says to (20:41):
nice bernfarr!
daddy says to (20:41):
my phone dies enought as it is
sstrumello says to jon (20:41):
That would be really cool, a pocket PC in my cell phone with a built in meter
daddy says to (20:41):
:)
Mama Belle says to (20:41):
The lighted strip for the flash is so helpful with kids
jon says to (20:41):
and put an mp3 player in there
macksdaddy65 says to 30ccsteven (20:41):
insurance does not prohibit you from acquiring the tools you need.
bernfarr says to (20:41):
Yeh, but without the other gizmos, you’d have more room for BIGGER BATTERIES. ^o)
Mama Belle says to (20:41):
Yes it does
daddy says to (20:42):
haha there you go
Rachel Hinman says to (20:42):
<a href=”http://www.medgadget.com/archives/2007/08/glucophone.html”>http://www.medgadget.com/archives/2007/08/glucophone.html</a>
jon says to (20:42):
they could put those rechargable lithium battery packs in there like the cell phones
Abby-Dabby-Doo says to (20:42):
Not if your wealthy
Mama Belle says to (20:42):
Which I am not
Mama Belle says to (20:42):
NOr do I know anyone who is
Abby-Dabby-Doo says to (20:42):
8-| I haven’t found that money tree yet
bernfarr says to (20:43):
Rachel I wonder how the glucophone will look after 6 months of bg testing with drops of dried blood all over it. :-}
Abby-Dabby-Doo says to (20:43):
what is free with diabetes?
bernfarr says to (20:43):
The aggravation?
Mama Belle says to (20:43):
Sleepless nights!
reese says to (20:43):
ding ding ding, bernard
scott m says to Rachel Hinman (20:43):
What a great concept
Abby-Dabby-Doo says to (20:43):
other than emotions or feelings
sstrumello says to Rachel Hinman (20:43):
I like the Glucophone concept, but don’t want to send the data wirelessly, I’m already having my hemoglobin A1C test results seized by the NYC Health Dept. without my consent, I don’t want anyone else to get to it!
macksdaddy65 says to 30ccsteven (20:43):
highs are free ;(
reese says to (20:43):
has your aggravation lessened by using the cgms bernard?
bernfarr says to (20:43):
Good. And lows (BG or caused by stress).
bernfarr says to (20:44):
reese it has been reduced enormously.
*** (20:44):Welcome to The Charmr Project Chat , sixuntilme !
bernfarr says to (20:44):
Hey kerri where were u?
jon says to (20:44):
you could store info on an 8 gb memory card and stick it into the computer for download
sixuntilme says to (20:44):
Hey sorry I’m late. But I’m here now. :)
Abby-Dabby-Doo says to (20:44):
Evening!
bernfarr says to (20:44):
reese I also saw my a1c go from 8.2 to 7.0 in 3 months at least partly because of CGMS.
sstrumello says to jon (20:44):
Much better idea!
jon says to (20:45):
thats how my cell phone works
Abby-Dabby-Doo says to (20:45):
Why wouldn’t insurance pay for just that! Lower A1C…
daddy says to (20:45):
so tell us more aobut charmr
macksdaddy65 says to (20:45):
tell us more about the chrmr
jon says to (20:45):
i can transfer pics, music, and whatever else that way
Rachel Hinman says to (20:45):
what would you like to know?
daddy says to (20:45):
how long until it’s developed?
reese says to (20:45):
because insurance companies don’t get it they just look at cost
Abby-Dabby-Doo says to (20:45):
How far out?
daddy says to (20:45):
what kind of cost?
scott m says to (20:45):
Is there an expected launch date for the Charmr, or financial support for it yet?
daddy says to (20:45):
will it use normal consumables?
jon says to (20:45):
you could keep pictures on the pump and even have them pop up as screen savers
Rachel Hinman says to (20:45):
originally – we though2-3 years out
macksdaddy65 says to (20:45):
what kind of sensor is it?
Mama Belle says to (20:45):
Can you lock out the touch screen?
daddy says to (20:45):
oh
Abby-Dabby-Doo says to (20:46):
Need guinea pigs?
daddy says to (20:46):
well isn’t MM going to have something out before that though?
Rachel Hinman says to (20:46):
yes – you can lock the touch screen
daddy says to (20:46):
they are working on artificial pancreas right now w/ JDRF
Mama Belle says to (20:46):
Thanks
bernfarr says to (20:46):
I think all the charmr parts/pieces are already available. Right? So is it just that you need a company to take the concept and run with it?
Rachel Hinman says to (20:46):
we are looking to find a company to partner with to see what can be done to develop the concept further
Abby-Dabby-Doo says to (20:46):
What is the best feature? The selling point?
Mama Belle says to (20:46):
Approx dimensions?
daddy says to (20:46):
has anyone offered to fund the effort?
Rachel Hinman says to (20:47):
the approximate dimensions are slightly larger than a thumb drive
macksdaddy65 says to (20:47):
what is unique about charmer that a company would want? that isn’t already available?
Rachel Hinman says to (20:47):
and slightly smaller than an ipod nano
gina says (20:47):
i said before it looked like a jump drive
Abby-Dabby-Doo says to (20:47):
Is it possible to get ONE stick out of the deal?
reese says to (20:47):
Get in touch with Lee Ioccoco :)
bernfarr says to (20:47):
My concern is that your concept in the hands of a current company will be like the parody of Microsoft redesigning the iPod package. <a href=”http://www.youtube.com/watch?v=aeXAcwriid0″>http://www.youtube.com/watch?v=aeXAcwriid0</a>
Rachel Hinman says to (20:47):
yes – we would like to avoid that
daddy says to (20:47):
the nanos they came out w/ today or the one’s from six months ago?
Rachel Hinman says to (20:48):
either seems as though it would be better than what diabetics are currently using
daddy says to (20:48):
yeah, hopefully not microsoft eh!
t1p3285 says to gina (20:48):
is there WORKING PROTOTYPE or is this just a concept on paper??
Rachel Hinman says to (20:48):
to manage their condition
Rachel Hinman says to (20:48):
it’s a concept on paper
macksdaddy65 says to (20:48):
what kind of data does the chrmr consider? bg, insulin?
Rachel Hinman says to (20:48):
some aspects we have prototyped physically
gina says to t1p3285 (private) (20:48):
chris?
Abby-Dabby-Doo says to (20:48):
Where can we follow your progress?
Rachel Hinman says to (20:49):
but we really need a company to work with for funding
t1p3285 says to gina (20:49):
sup
t1p3285 says to gina (private) (20:49):
oops sup
bernfarr says to (20:49):
I like the food database on the Cozmo and Animas pumps. Does the charmr have a similar idea?
sstrumello says to (20:49):
Consider licensing the concept to multiple companies, or negotiating with JDRF to buy the patent rights as they are with some new drugs
Rachel Hinman says to (20:49):
the project started as an internal R&amp;D prpject
gina says to t1p3285 (private) (20:49):
how do you like this cool right
Rachel Hinman says to (20:49):
that was sponsored by our company
macksdaddy65 says to (20:49):
what about the whole patent thing like what happened between Smiths and MM?
daddy says to (20:49):
sounds like a neat project to work on. has it been fun?
t1p3285 says to gina (private) (20:49):
yeah- wich some people wouldve done theior homework though
t1p3285 says to gina (private) (20:49):
having no clue- ya know?
gina says to t1p3285 (private) (20:49):
what do you mean
Rachel Hinman says to (20:49):
we are thinking of trying to do what debra adler did – with the target pill bottle concept
gina says to t1p3285 (private) (20:49):
oh
reese says to (20:50):
diabetes and fun should never be in the same sentence ;)
t1p3285 says to gina (private) (20:50):
I did send a newsletter out last night to hype this !
macksdaddy65 says to (20:50):
haha
Rachel Hinman says to (20:50):
she talked to a lot of companies – walgreens, cvs
gina says to t1p3285 (private) (20:50):
oh nice thanks
bernfarr says to (20:50):
That Target pill bottle was just a lovely piece of work.
Rachel Hinman says to (20:50):
then she met target – and they made it happen
bernfarr says to (20:50):
So have Target take it and run with it. :-)
Mama Belle says to (20:50):
I also loke the food database. Have you considered this?
daddy says to (20:51):
yeah food database, very handy
Rachel Hinman says to (20:51):
well, that is why i am wondering who is the “target” of the pump/medical device world
sstrumello says to Rachel Hinman (20:51):
The only issue is that until it is widely adopted by CVS, Walgreens, etc. it fails to reach the masses
daddy says to (20:51):
insurance company reimbursement, then companies follow
daddy says to (20:51):
nothing is done w/o reimbursement
Abby-Dabby-Doo says to (20:51):
Who makes the luer locks for the MM pump? Anyone know?
macksdaddy65 says to (20:51):
how much do you think it will take to commercialize?
bernfarr says to (20:51):
I think part of the challenge is that FDA has stuck with the reliability and functionality tiers of the design hierarchy of needs. And so the device companies are there also.
Rachel Hinman says to (20:51):
true – but it shows what is possible
bernfarr says to (20:51):
Rachel what do you mean by target?
t1p3285 says to gina (20:52):
ant thought into a separation alarm? What happens if the person forgets the accessory piece?
Rachel Hinman says to (20:52):
i mean Target – the retail chain
bernfarr says to (20:52):
Ooops. Sorry.
Rachel Hinman says to (20:52):
np
Rachel Hinman says to (20:52):
sorry i wasn’t more clear
reese says to (20:52):
i was confused too bernard
*** (20:52):Welcome to The Charmr Project Chat , paula !
Abby-Dabby-Doo says to (20:52):
Well, you just made me want to shop there more!
Mama Belle says to (20:52):
Yeah, what does happen if you forget the charm?
bernfarr says to (20:53):
Sorry about my short-term memory. I’d talk with JDRF and see who they think are most innovative and deep pocketed for the artificial pancreas work.
t1p3285 says to gina (20:53):
i personally would like alil shock device- to teach my son to remember it
daddy says to (20:53):
JDRF is already doing this w/ MM
daddy says to (20:54):
they are doding artificial pancreas w/ them which does all this suff. packaging will be an all in one unt.
t1p3285 says to gina (20:54):
he forgets it and ZAP!!!
daddy says to (20:54):
haha ouch t1p!
bernfarr says to (20:54):
But I think the ‘obvious’ answer is MM. Look at some of the early stage startups like Nilimedix and MichoChips. Maybe there VC companies would commit to this.
daddy says to (20:54):
i bet FDA would love that hehe
sstrumello says to bernfarr (20:54):
The (relatively) new CEO is really pushing to have the JDRF organization serve the role of filling in the gaps in terms of scientific and/or commercial development, and considerable progress has been made just in the last 12 months
*** (20:54):paula quit the room
macksdaddy65 says to (20:55):
art panc progress w JDRF $s is great but how does that make people feel who donated for a cure? maybe better question for another chat.
bernfarr says to (20:55):
The other challenge is that this is not a normal consumer device with a market of millions. If you make it more approachable/usable then the market is in the 100’s of thousands.
Abby-Dabby-Doo says to (20:56):
I wish someone would focus on the little ones for something someday- IMO it’s all focused around adults.
bernfarr says to (20:56):
So getting the costs really low is not possible. And unless it’s approachable getting the average person w/diabetes to adopt it is not that easy.
bernfarr says to (20:56):
We’re the noisy minority in this room. :-)
sstrumello says to macksdaddy65 (20:56):
Its probably a question for another chat, but I think the perspective is that treatment has fundamentally not changed in 90 years, and its no worse than pushing stem cell research on some who don’t support it.
macksdaddy65 says to (20:56):
yep
Abby-Dabby-Doo says to (20:57):
I can’t even buy a decent thing to carry the damn pump in on MM website. :|
daddy says to (20:57):
yeah, i guess bayer is doing some stuff too
daddy says to (20:57):
around better meters
reese says to (20:57):
i agree abby
AllisonBlass says to (20:58):
What do you mean?
bernfarr says to (20:58):
Abby-dabby one day your kids will be grown-ups and you’ll find that a lot of it is focused on kids. :-) For example, no T1 conference for adults and relatively few endos that work with adults.
AllisonBlass says to (20:58):
Like a holder?
Abby-Dabby-Doo says to (20:58):
Anything.
AllisonBlass says to (20:58):
I have a clip for the pump
AllisonBlass says to (20:58):
that I bought on their website.
Mama Belle says to (20:58):
Kids don’t wear clips
Abby-Dabby-Doo says to (20:58):
Nothing appealing for the younger generation. I mean can we get anymore boring with black and blue
AllisonBlass says to (20:58):
PumpWear Inc.
AllisonBlass says to (20:58):
try there
t1p3285 says to gina (20:58):
my son does
reese says to (20:59):
but it sticks out allison with a shirt over the waist, tucking in is not cool
bernfarr says to (20:59):
abby I’m surprised the pump makers don’t follow the phone or ipod form factors. Then we’d be spoilt for choice in terms of carriers and accessories.
Abby-Dabby-Doo says to (20:59):
That clip would last us less than a week, and pull her pants OFF in the process of wearing it.
Mama Belle says to (20:59):
So does mine, but in general they don’t especially the wee ones
AllisonBlass says to (20:59):
But no clip?
AllisonBlass says to (20:59):
Sorry I guess I don’t understand the question….
Abby-Dabby-Doo says to (20:59):
Why do I have to go to pumpwear? Why can’t the damn company come up with something? Don’t they give a rip about the little ones?
Mama Belle says to (20:59):
Accessories aren’t kid oriented, that is what she was getting at, I think
Abby-Dabby-Doo says to (21:00):
Yep
sstrumello says to Mama Belle (21:00):
Animas’ clips (at least early generations) were screwed in with a screwdriver … your kid would have to be pretty destructive to remove it!
AllisonBlass says to (21:00):
MM has those new skins for the pumps.
AllisonBlass says to (21:00):
Those are pretty cool.
bernfarr says to (21:00):
Agreed. Look at the buzz over the OneTouch Mini.
Mama Belle says to (21:00):
My daughter is older and wears jeans and stuff with pockets a lot, but when she was younger she wore no pockets with cotten knit stuff. That doesn’t work well with a clip
bernfarr says to (21:00):
How innovative was that?
macksdaddy65 says to (21:00):
what about the chrmr sensor/longevity and how that relates to frequency of change outs and usability, etc… if you swap out every week vs. every month that makes a big difference in the design, yes?
AllisonBlass says to (21:01):
I have the jellybeans one. Just yesterday when I was at the doctor’s, I had a 4-year-old girl tapping at my pump because she saw the jellybeans on it.
Mama Belle says to (21:01):
One touch mini is crap IMHO
AllisonBlass says to (21:01):
I love the mini.
bernfarr says to (21:01):
Agreed. But the colors are pretty!
daddy says to (21:01):
why is it crap?
AllisonBlass says to (21:01):
what’s wrong with the mini?
bernfarr says to (21:01):
And when they add a download it’ll take off
Mama Belle says to (21:01):
It does way less than the flash and is bigger!
bernfarr says to (21:01):
Coz the size is hard to beat.
Rachel Hinman says to (21:01):
i think we were thinking every 3-4 days/week
sstrumello says to (21:01):
I like the Mini too, its tiny … the only downside is that the data can’t be downloaded (yet)
Mama Belle says to (21:01):
I don’t see what the big deal is about it. You can’t dload it
daddy says to (21:02):
good point mama belle
Mama Belle says to (21:02):
It has no light
bernfarr says to (21:02):
dload is coming later in year.
scott m says to sixuntilme (21:02):
The biggest issue I have with the Mini is the small BG history it keeps
AllisonBlass says to (21:02):
Oh well.
AllisonBlass says to (21:02):
Ok, well, I’m going to go.
AllisonBlass says to (21:02):
Bye everyone.
Mama Belle says to (21:02):
BYe!
bernfarr says to (21:02):
Hey Allison. Nice blog post. TTFN.
Mama Belle says to (21:02):
(})
Rachel Hinman says to (21:02):
hey folks – i am going to have to sign off, too.
scott m says to sixuntilme (21:02):
Bye Allison
Abby-Dabby-Doo says to (21:02):
Ya, and you can’t download it, no back light. It’s pink and that’s all my dd likes
Mama Belle says to (21:02):
BYe! Thank you!
*** (21:02):AllisonBlass quit the room
Rachel Hinman says to (21:02):
it’s been great chatting with all of you!
sstrumello says to Mama Belle (21:02):
Try being a guy and carrying a purse to carry all of this crap around, and then you’ll see what the big deal is!
daddy says to (21:03):
yes great chat
bernfarr says to (21:03):
Rachel good to talk with u. bernard.farrell@gmail.com
gina says to t1p3285 (21:03):
thanks for chatting rachel
scott m says to (21:03):
Thanks Rachel
Rachel Hinman says to (21:03):
please feel free to email me with any more comments: hinman@adaptivepath.com
Abby-Dabby-Doo says to (21:03):
Thank you for your time Rachel!
Abby-Dabby-Doo says to (21:03):
BEST OF LUCK
Rachel Hinman says to (21:03):
thanks!
sstrumello says to (21:03):
Thanks Rachel, you’ve been great and very gracious considering how vocal we all are!!
*** (21:03):Rachel Hinman quit the room
bernfarr says to (21:03):
We should start a Charmr pool. Money pays for the first one! :-)
gina says (21:03):
lol
scott m says to (21:04):
Wow, very ambitious project. I hope some headway is made on this one
Mama Belle says to (21:04):
“Try being a guy and carrying a purse to carry all of this crap around, and
then you’ll see what the big deal is!”
I promise you, as a parent I carry around more than you do. Also, again the flash is smaller!
bernfarr says to (21:04):
Night night everyone. Good talking with y’all.
Abby-Dabby-Doo says to (21:04):
Go mama
daddy says to (21:04):
yeah, but he still has to carry a MAN PURSE!
bernfarr says to (21:04):
Gina thanks for organizing.
Mama Belle says to (21:04):
Awww, buck up!
scott m says to (21:04):
Let’s hear it for the Freestlye Flash! Yea
Mama Belle says to (21:04):
Yes, thanks Gina!
sstrumello says to Mama Belle (21:04):
Yes, but the downside is the Flash uses those awful test strips
Mama Belle says to (21:05):
What’s wrong with the strips?
gina says (21:05):
no problem guys!
Mama Belle says to (21:05):
We have zero strip issues
reese says to (21:05):
why awful
bernfarr says to (21:05):
If anyone is in Connecticut on Sunday drop by and cheer for us. <a href=”http://bikethemiles.com”>http://bikethemiles.com</a>.
scott m says to (21:05):
aweful?
gina says (21:05):
if there are any other chats you guys think you want to have let mem know
t1p3285 says to gina (21:05):
Gina- I was just typing when she left but what type of credentials does the company Rachel works for has for making this a go?
reese says to (21:05):
good luck bernard
gina says (21:05):
<a href=”http://www.adaptivepath.com/blog/2007/08/14/charmr-a-design-concept-for-diabetes-management-devices/”>http://www.adaptivepath.com/blog/2007/08/14/charmr-a-design-concept-for-diabetes-management-devices/</a>
reese says to (21:05):
insurance companies and payment for cgms, gina
30ccsteven says to (21:05):
BYE
sstrumello says to (21:05):
Good luch, Bernard!
*** (21:05):30ccsteven quit the room
gina says (21:05):
ok reese good idea!
Mama Belle says to (21:06):
Yes, what reese said
bernfarr says to (21:06):
t1p3285 Adaptive Path is way up there. In the same level as Frogg design who helped on several Apple devices. Good company.
scott m says to (21:06):
Good luck with biking those miles!
gina says (21:06):
hey guys
gina says (21:06):
if you all sign up to my diabetestalkfest.ning.com page you will get updates on the latest chats
gina says (21:06):
and past transcripts
Mama Belle says to (21:06):
Already on it
gina says (21:06):
great
*** (21:06):bernfarr quit the room
sstrumello says to (21:07):
Plus, the chatroom is accessible from that page, too!
sixuntilme says to Abby-Dabby-Doo (21:07):
Sorry I was so late. :( But great seeing everyone here.
Mama Belle says to (21:07):
Bye Kerri

Posted in CGMS, Past Chat Transcripts | No Comments »

Dr. Elizabeth Fenjves of DRI

December 8th, 2009

CHAT TRANSCRIPT – Elizabeth Fenjves, Ph.D., Director of Gene Therapy at the Diabetes Research Institute (September, 14, 2006)

Want to be a guest speaker contact: Gina

Jon : (16:59): Welcome to the Diabetes Talkfest chat room!

AllisonBlass : (16:59): Should we have a drumroll first?

Jon : (17:00): Tonight we are chatting with Elizabeth Fenjves, Ph.D. Dr. Fenjves is Director of Gene Therapy at the Diabetes Research Institute. She is also an Associate Professor of Medicine and Pediatrics at the University of Miami.

Jon : (17:00): Dr. Fenjves’ research over the last 10 years has been focused on exploring the transfer of therapeutic genes to treat metabolic disorders. Her lab has been researching two major areas of investigation.

Jon : (17:00): Dr. Fenjves has published her findings in journals such as Human Gene Therapy, Diabetes and Transplantation. She holds an independent research grant from the American Diabetes Association and is a participant in a Center Grant from the Juvenile Diabetes Research Foundation.

Jon : (17:01): She is an active member of the American Society for Gene Therapy, The International Society of Transplantation and The American Transplantation Society.

Jon : (17:01): Welcome Dr. Fenjves

Ellen : (17:01): I’ll add that Dr. Fenjves is also very beautiful, inside and out…always approachable, always willing to answer questions and have people visit her lab.

Jon : (17:02): Go ahead with the questions

gina : (17:02): Let the questions begin!

Elizabeth Fenjves, Ph.D : (17:02): Wow thank you so much Ellen! I guess we can all use that…but tonight it feels particularly good

Ellen : (17:03): I’d like to know what got you interested in diabetes research per se

gina : (17:03): haha i was just going to ask that

gina : (17:03): yes why diabetes

gina : (17:03): and not cancer or aids or something?

Elizabeth Fenjves, Ph.D : (17:04): I was always interested in metabolic diseases and the idea that we could correct them by adding genetic material. Unfortunately diabetes is such a complex disorder that one gene won’t correct it. But the idea of combining gene therapy with metabolic disorders is just fascinating to me.

sue62 : (17:04): my md is also a teacher as well as a endocrinologist
.
Elizabeth Fenjves, Ph.D : (17:05): That’s wonderful because someone like that understands the current research

sue62 : (17:05): yes he does

gina : (17:05): can you explain a little bit about what exactly you do at the DRI

sue62 : (17:05): hes into cell biology – in addition to other things

Acroyear : (17:06): Elizabeth, how will the new reserch being done by the Lajolie Institute help us?? Encapsulating beta cells so we only have to do 1 shot a year potentially??

Elizabeth Fenjves, Ph.D : (17:06): Of course. What we are interested in is transplanting pancreatic islets into type 1 diabetics that can’t control their insulin. The problem is that the beta cells die in the transplant setting (the liver)

ann : (17:06): ok, here I go.. I have been dx last month.dR put me on Metformin 1,000 at dinner. Every afternoon around noon I get nausea.. every day…is this from my blood sugar or the meds….Also when I go high I get the sweats…is that normal…..?

Elizabeth Fenjves, Ph.D : (17:06): My lab is primarily interested in protecting the islets and the beta cells by inserting new protective genes into them.

Ellen : (17:07): I see that you are working on gene transfer with transplanted islets, is there any research being done to use gene therapy as a stand alone cure for diabetes without islet transplantation?

AllieB2 : (17:07): is that approach more effective than encapsulation, Dr. Fenjves?

Elizabeth Fenjves, Ph.D : (17:07): Ann I’m going to let someone else answer that because I’m not an MD.

Elizabeth Fenjves, Ph.D : (17:08): Encapsulation hasn’t worked well yet because the cells die for lack of oxygen. So you protect them from the immune attack but they die anyway.

gina : (17:08): How will you fix them from dying?

Acroyear : (17:08): if that is so…how many shots would we look at getting in a year?

Acroyear : (17:09):
and how far along are we at making our very own beta cell transplants available so we don’t have to have any anti-rejection drugs??

Elizabeth Fenjves, Ph.D : (17:09):
With gene therapy we’re trying to protect the islets by inserting a protective gene. For example ERYTHROPOIETIN (EPO), which is used by athletes, will protect islets from dying.

sue62 : (17:10): have you studied people with more than i immune problem in realtionship to the diabetes?

Elizabeth Fenjves, Ph.D : (17:10): We’re pretty far from not needing anti-rejection drugs. We still use cadaver islets. One day we’ll be able to make islets from stem cells.

1955dm : (17:10): For what conditions has gene therapy been clinically useful, so far?

AllieB2 : (17:11): is ERYTHROPOIETIN a steroid?

shelleyk : (17:11): Dr. Fenjves, I am reading some of your papers using adenoviral and retroviral vectors for gene delivery. It is very interesting. Are there many people in your group, or elsewhere that you know of that are doing preventative research vs. treatment as well?

Elizabeth Fenjves, Ph.D : (17:11): For melanoma and for severe combined acquired immunodeficiency (SCID) which is the boy in the bubble disease

Acroyear : (17:11): why can we not make/take islets from our own bodies and make a warehouse of stored islets??

sue62 : (17:12): in my case i have hashimots as well as type 2 diabetes and theres considering fms autoimmune as well

shelleyk : (17:12): Isn’t there a group in Boston working on using other types of cells to produce insulin?

Elizabeth Fenjves, Ph.D : (17:12): EPO is not a steroid. It’s a naturally ocurring hormone that we all make to protect our red blood cells. It turns out it protects lots of other cells too..

Elizabeth Fenjves, Ph.D : (17:13):
Yes there is a group in Boston and one in Houston too. But so far it’s so difficult to make a cell that is glucose responsive. Any cell can be made to secrete insulin but not in a glucose responsive way.

gina : (17:14): is it possible in the near future that maybe my sister or someone in my family would be able to donate their cells to me?

Acroyear : (17:14): why can we not make/take islets from our own bodies and make a warehouse of stored islets??

shelleyk : AllieB2 (17:15): There seems to be many more groups working on type II vs. type 1, do you find this to be the case?

Elizabeth Fenjves, Ph.D : (17:15): There is one case where this was done however unfortunately the graft failed after a short while.

AllieB2 : (17:15): there are many more type IIs than type 1s :(

Elizabeth Fenjves, Ph.D : (17:15): There is a lot of money being collected for type 2 at this point because it’s becoming such an epidemic in the world.

megan : (17:15): how long do islet transplants in current trials tend to last/

gina : (17:15): yea there are like 8 million just in new york ha

Ellen : 1955dm (17:16): Hopefully a cure for type 1 will also help those with type 2

AllieB2 : (17:16): but the research efforts nowadays are so progressive– I’m thrilled we have experts working on it, like Dr. Fenjves!

shelleyk : Elizabeth Fenjves, Ph.D (17:16): What about the generation of islets from stem cells, which theoretically may not be rejected?

Elizabeth Fenjves, Ph.D : (17:16): Islets have lasted in recipients up to 10 years. And yes there are overlaps in the disease cure approaches however type II as you know does not have the autoimmune component

Elizabeth Fenjves, Ph.D : (17:17): Stem cell research has exciting potential but there are still many issues. Certainly there is the political problem of not getting funding. But apart from that so far most stem cells have the potential of becoming carcinogenic. So we have to find ways

Acroyear : (17:17): that is stupid Type ii’s being epidemic..its the type 1’s that have all the problems and cause the strin on health care..Most of the type II’s should not have even been diabetic if they had taken care of themselves in the 1st palce

Elizabeth Fenjves, Ph.D : (17:17): to grow them, push them into becoming islets without turning cancerous and finally transplanting them. A lot of work to be done…

megan : (17:17): With stem cells, I understand we could have islets with no need for anti-rejection meds since our body recognizes them as our own. However, my immune system attacked my first set of islets. Even if I get another set through stem cell research, won’t those antibodies still be there?

sue62 : (17:18): so type 2 isnt autoimmune ?

megan : (17:18): no, type 1 is immune

Elizabeth Fenjves, Ph.D : (17:18): Yes megan you have the antibodies there but if the stem cells came from you there would hopefully be no rejection.

Elizabeth Fenjves, Ph.D : (17:19):
No type II is not autoimmune but type I is. In type I your own cells (the T cells) kill the beta cells in the islets.

Jon : (17:19): What is your biggest obstacle when trying to move forward with your research?

gina : (17:19):
****JUST A REMINDER PLEASE DO NOT PRIVATE MESSAGE DR. FENJVES****

beth : (17:20): i had a text book that said type 2 was autoimmune

sue62 : (17:20): just like hashimotos kills the thyroid system

beth : (17:20): but i am sure it was a mistake

pookas : (17:20): Why can’t stem cell research be privately funded? Because of the laws?

shelleyk : Elizabeth Fenjves, Ph.D (17:20): I actually have two questions, if a young scientist wishes to get into doing diabetes research, do you think there are a lot of opportunities?

Elizabeth Fenjves, Ph.D : (17:20): Our biggest obstacle is that we need to insert many genes. Diabetes isn’t simple and to insert more than one gene is so difficult.

Heather : (17:20): Dr. Fenjves, do you know what signals the body sends out that destroys the islet cells in Type 1 diabetics? I’m just now taking a microbiology course and was curious

Ellen : 1955dm (17:21): Stem cell research can be privately funded. In fact, when I make donations to DRI, I often ear mark my donation to go to stem cell research because it cannot receive Federal funding.

Acroyear : (17:21): If it is a money issue and a politics issue for those people that believe that stem cell research is against god, I say to them wake up and let those of us that need the help get it. We need more research, and more money

Elizabeth Fenjves, Ph.D : (17:21): There are a lot of opportunities to do research in diabetes because it’s getting more attention and funding. In terms of the question about stem cell, we get private funding for it at the DRI

gina : (17:22): **GIVE DR. FENJVES A MINUTE TO ANSWER YOUR QUESTIONS

Elizabeth Fenjves, Ph.D : (17:23): For Heather, we don’t know exactly what the signals are we just know that there are both environmental and genetic predispositions. We also know that sometimes an infection can start a cascade that is damaging to a lot of cells in the body.

Elizabeth Fenjves, Ph.D : (17:23): Don’t worry GIna I’m a pretty fast typist…I started out as a temp secretary!

Heather : (17:23): thank you!

1955dm : (17:23): You mentioned risk of cancer with stem cells, but isn’t this a potential risk with any gene therapy, also?

AllieB2 : (17:24): Dr. Fenjves- if the autoimmune attack on beta cells is corrected, will the genetically protected beta cells for transplantation need a considerable amount of tweaking to survive?

Elizabeth Fenjves, Ph.D : (17:24): Not the way we do it. We do it outside the body, we actually insert the genes and make sure they are working before we transplant. The only issue with cancer and gene therapy is when the gene is inserted “in vivo” into the body.

megan : (17:24): trading diabetes for cancer? that’s encouraging…

Ellen : 1955dm (17:25): What studies in xenotransplantation are being done at the DRI?

Elizabeth Fenjves, Ph.D : (17:25): Yes Allieb2 because you have inflammation, you have cytokines that want to kill these new cells, you have “anoxia’ which is insufficient oxygen so there are lots of other attacks.

Elizabeth Fenjves, Ph.D : (17:26): No xenotransplantation yet. We are looking at pig islets and have used them for non-human primates but they are not being considered yet for people. In Mexico they’re doing it but in the US we’re a long way.

AllieB2 : (17:26): what a hostile environment we have! or maybe our immune systems work too hard ;)

Elizabeth Fenjves, Ph.D : (17:27): Yes that’s well put. Very hostile and not at all interested in these new cells we’re putting in there that don’t belong.

megan : (17:27): does this hyperactive immune system put diabetics at higher risk for allergies, or is that a different type of immunoglobin?

sue62 : (17:28): what makes one person susceptible to an auto immune problem over another even in the same household

Ellen : 1955dm (17:28): Do you think you could use similar gene transfer with porcine islets to prevent rejection ?

pookas : (17:28): So we KNOW yet if an infection or virus [or a history of certain viruses] PLUS genetics triggers the Type 1, especially in children?

megan : (17:28): I know allergies are IgE, but I can’t recall what autoimmune diseases are

shelleyk : Elizabeth Fenjves, Ph.D (17:28): There is some gene therapy research being done at my school as well (on oral cancers though), they have issues of targeting the virus to specific cell types in this case cancer. Do you have targeting issues as well?

Elizabeth Fenjves, Ph.D : (17:28): That’s different, not the same antigens.

Elizabeth Fenjves, Ph.D : (17:29): We don’t KNOW but there are lots of people in the field that suspect that an infection often triggers the whole cascade

pookas : (17:29): Sorry, I meant “Do we know”

gina : (17:29): you mean that triggers diabetes in general

pookas : (17:29): My son got it RIGHT after having Scarlet Fever. Is there a way to know for sure?

Elizabeth Fenjves, Ph.D : (17:30): Auto immune simply means that you attack yourself with your immune system. That for some reason your own T-cells that should protect you from foreign antibodies suddenly think your beta cells are foreign

AllieB2 : (17:30): I got type I after I had the chicken pox

sixuntilme : (17:30): I was diagnosed right after I had a four day virus with an intense fever.

Heather : (17:30): it is very common to have the disease brought to the surface after being ill

Elizabeth Fenjves, Ph.D : (17:30): There are people working on trying to figure that out. They are called epidemiologists and they are looking at how common it is that an infection triggers a disease like this.

gina : (17:31): I got it right after my 25th birthday

shelleyk : (17:31): I also was sick with flu symptoms before I was diagnosed. It seems to be common here

beth : (17:31): Certain autoimmune disorders (in terms of age at onset) are more common in the elderly – and some in the young why ?

pookas : (17:31): My son also had Cocksaxi [sp?] when he was 2.

sue62 : (17:31): i got thyroid after i hit puberty – it wasnt dxd till years later

Elizabeth Fenjves, Ph.D : (17:32): Good question Beth. The immune response in the elderly is always weaker. However in autoimmunity the young are equally vulnerable.

pookas : (17:32): Are Type 1’s more prone to viruses? In your opinion/research?

Elizabeth Fenjves, Ph.D : (17:32): It doesn’t appear that Type 1 are more prone to other diseases.

sue62 : (17:33): not even auotimmune ones?

gina : (17:33): why would a person that is 25 years old develop type 1 do you think

beth : (17:33): maybe they were lucky to avoid the env. trigger for a long time

pookas : (17:34): It seems my son picks up EVERY virus in the school even if only one other child has it. I thought there could be a connection?

Elizabeth Fenjves, Ph.D : (17:34):
There are certain genes that predispose you and certain genes that protect you. The actual reason as to why at a certain point is really hard to understand but maybe the triggers weren’t there earlier even if the predisposition was.

beth : (17:34): did he go to day care

Heather : (17:34): they have started talking about a type 1 1/2 now in older adults

AllieB2 : (17:34): Dr. Fenjves- is BCG a virus? and if so, would it be a virus worth testing for gene therapy before transplantation?

pookas : (17:34): Preschool, but the viruses started much earlier.

pookas : (17:35): He was in school 3 days and had a cold already.

sue62 : (17:35): are you more predisposed too illnesses/diseases if your in your family tree you had relatives related BEFORE they got married and then got married?

Elizabeth Fenjves, Ph.D : (17:35):
I don’t know too much about BCG although I know some research is being done on it. We do very good virus testing before all our transplants and have never had a problem with that.

shelleyk : (17:36): What exactly is BCG?

AllieB2 : (17:36): it was a vaccination they gave for TB, many years ago

Elizabeth Fenjves, Ph.D : (17:37): The marriage between members of the same family is a risk because we all carry certain genes that only express as disease if both parents have them. Of course the likelihood of related people having the same “bad” gene is higher than a random person from the population

Ellen : (17:38): Dr. Pugliese was studying the development of the thymus and its relationship to the cause or onset of type 1 – is that still being looked at?

Elizabeth Fenjves, Ph.D : (17:39): Yes it is. I was going to suggest that you invite him one night. He knows a lot about the predisposing genes for type I

megan : (17:39): Dr. Fenjves- someone mentioned type 1.5 earlier

megan : (17:40): since that is autoimmune as well, would a cure for type 1 likely help those with 1.5 also?

sstrumello : AllieB2 (17:40): out of curiosity, will you guys/gals discuss this in more detail at the NYC researchers presentation in October?

tomahawk134 : (17:40): yes I am interested in learning about 1.5?

sue62 : (17:40): how would they differ?

shelleyk : (17:40): Which viruses are you using for your gene therapy studies?

Elizabeth Fenjves, Ph.D : (17:40): It’s very new and not fully accepted nomenclature. I think as kids start getting type II and older adults type I there is a blurring between the lines.

tomahawk134 : (17:41): and the blurring is 1.5?

AllieB2 : (17:41): i thought they were conducting blood test screenings to identify if the specific class of t-cell that attacks the beta cells is present to determine if it is type 1 of type 2. Maybe I misunderstood?

pookas : (17:41): That makes sense about the 1.5.

Ellen : (17:41): How much did the tragedy of gene therapy from Univ. of Penn, set back your research with gene therapy? Do you think it will slow its acceptance?

Elizabeth Fenjves, Ph.D : (17:42): I use primarily a “lentivirus” which is very useful because it infects non dividing cells. Islets don’t divide so it’s not simple to get genes into them. These are really good because of the fact they are safe.

bethy : (17:42): Agreed about the nomenclature bc ppl claim it means diff things ie 1.5 is lada 1.5 is mody – no one seems to be able to decide

Elizabeth Fenjves, Ph.D : (17:42): U Penn gene therapy was a horrible thing all around. It killed a young man unnecessarily and it set back the field by 20 years also unnecessarily. VERY SAD!

Ellen : gina (17:43): The Sept 2006 issue of Diabetologia (I think that issue) has an article on “declassifying diabetes”

Elizabeth Fenjves, Ph.D : (17:43): However there are recent results with melanoma and gene therapy that are so promising that we may be back in “business”

shelleyk : (17:43): I helped a lab at my school use a lentiviral vector to infect islets in culture. I don’t know what they ended up doing with it though; I just made the virus for them and had to rotate in another lab.

bethy : (17:44): Why are Caucasians more prone to t1 ?

Elizabeth Fenjves, Ph.D : (17:44): Wow Shelley come and work in my lab. That’s an amazing project. Did you enjoy doing it?

gina : (17:45): maybe the diabetes talkfest connected you two !!

gina : (17:45): lol

pookas : (17:45): Do you see any connection between blood types in the dx of Type 1’s? My husband [non-D] and son [D} have the same blood type and the type 1 is from his side, yet my older son is my blood type w/ no D yet. We haven’t had him tested for the antibodies.

Elizabeth Fenjves, Ph.D : (17:45): Pookas question is perfect for Dr. Pugliese. I think you defintely should invite him.

bethy : (17:46): is insulin a 49 amino acid peptide?

gina : (17:46): elizabeth maybe you can help me to contact him?

tomahawk134 : (17:46): Dr. Fenjves why are Native Americans more pre-disposed to Diabetes?

bethy : (17:46): or how many amino acids does it have

Ellen : gina (17:46): I can help with that too Gina ;-)

pookas : (17:46): They are both O- and my other son and I are A-.

gina : (17:46): ok thanks

Elizabeth Fenjves, Ph.D : (17:46): Yes native americans are highly predisposed. And I’d be happy to connect you to Dr. Pugliese.

shelleyk : (17:47): Yes, I actually miss virology a lot! I am finishing up my PhD in microbiology, hopefully in two months, I ended up choosing a lab working with HSV-1 and CMV over the diabetes lab because they were doing more typeII and insulin signaling, Now I regret it.

tomahawk134 : (17:47): Please that would be extremely helpful
Heather : (17:47): as I understand it there is much less of a genetic component with type 1

megan : (17:47): ugh, i hated microbiology, but pathophysiology was interesting

bethy : (17:47): native americans are highly predisposed to type II not type I

Elizabeth Fenjves, Ph.D : (17:47): Where are you getting your Phd?

shelleyk : (17:48): SUNY Upstate Medical University

tomahawk134 : (17:48): based on what bethy?

shelleyk : (17:48): In Syracuse, NY

Elizabeth Fenjves, Ph.D : (17:48): Great school. I got mine in SUNY Stony Brook.

megan : (17:48): I live in Buffalo

AllieB2 : sstrumello (17:48): Great School!!! 5 minutes from my house

gina : (17:48): elizabeth are you from NY?

gina : (17:48): thats where i am from long island

bethy : (17:48): Poor tolerance for the food that European people have been eating for a longer time ?

shelleyk : (17:48): :o ) And now you are in sunny Florida!

bethy : (17:48): Maybe

sstrumello : shelleyk (17:48): you could always go into pharmaceutical research, shelly … only big pharma spends more on marketing than they do on research, and research into type 1 treatments are almost non-existent

bethy : (17:49): that stands for state university of NY

bethy : (17:49): right ?

gina : (17:49): yes

Elizabeth Fenjves, Ph.D : (17:49): I’m from Venezuela. But I came to the US for my education and ended up staying here.

tomahawk134 : (17:49): Hummm Bethy I am sure that may be a contributor to Type 2

shelleyk : (17:50): yes, I know. I actually am going to be doing some work with Bristol Myers Squibb starting the first of the year… but not on diabetes. Anti-cancer drugs instead

tomahawk134 : (17:50): but many of my relatives are Type 1

bethy : (17:50): All aboriginal ppl are more prone to type ii

gina : (17:50): elizabeth do you want to tell us anything else about what the DRI is working on

bethy : (17:51): Polynesians, aboriginal Australians Inuit

bethy : (17:51): well a lot of ppl say they have type 1 bc they take insulin

Elizabeth Fenjves, Ph.D : (17:51): WE are working on many approaches to keep islets alive. One is making special medias that are actually patented by the University of Miami. We are also putting proteins into the cells using “protein transduction”

pookas : (17:51): Thank you Dr. for talking w/ us!

bethy : (17:51): its a common mistake

tomahawk134 : (17:52): A comment Dr. Thank you for taking the time to address us

Ellen : (17:52): How is it going with the device that you had featured on the DRI mainpage, similar to Dr. Valdes device – a macro device? Did you use sertoli cells in it as well as islets?

tomahawk134 : (17:52): that is true bethy

Elizabeth Fenjves, Ph.D : (17:52):
We are also using stem cells to try and coax them to become islets. And my lab is interested in adding certain “extra cellular matrix proteins” to make islets do better in culture. We are doing this with a company and getting really lovely results.

tomahawk134 : (17:52): I would like to talk to some more on this Bethy

bethy : (17:52): okay

tomahawk134 : (17:53): I need to conclude for the evening I will look for you on the forum

Ellen : gina (17:53): Really lovely results {lol_smiley}

Elizabeth Fenjves, Ph.D : (17:53): About the Valdez device we weren’t able to duplicate many of his results. Yes we did put sertoli cells.

bethy : (17:53): do you know what Pancreastatin is ?

sstrumello : shelleyk (17:53): any research into cultivating knock-out pigs? There was some news this week on xenotransplantation into primates (monkeys) recently ***

AllieB2 : (17:54): Dr. Fenjves– are you allowed to tell us the name of the company? (for those of us who are always looking for promising *investment* opportunities?)

Elizabeth Fenjves, Ph.D : (17:54): It was such a pleasure to talk to all of you. Best of luck and don’t hesitate to write any of directly at the DRI. We love visitors and interested people.

megan : (17:54): thank you Dr. Fenjves

sstrumello : Elizabeth Fenjves, Ph.D (17:54): I hope to see you at the NYC research presentation in October!!

Ellen : (17:54): Thank you so very much for your generosity of time and spirit.

sstrumello : Elizabeth Fenjves, Ph.D (17:55): Thanks for joining us this evening!

shelleyk : (17:55): Not that I know of, but again I am not too up to date on current diabetes research (too busy writing my thesis

Elizabeth Fenjves, Ph.D : (17:55): No i’m sorry I can’t tell you the name but I wouldn’t invest right now anyway. We are doing work with Amylyin that you probably know has generated an exendin like molecule.

Jon : (17:55): Thank you for being here tonight, Dr. Fenjves!

AllieB2 : Elizabeth Fenjves, Ph.D (17:56): Yes, I love Amlyn these days ;)

Elizabeth Fenjves, Ph.D : (17:56): my pleasure, good night.

AllieB2 : Elizabeth Fenjves, Ph.D (17:56): Symlin is a blessing!

AllieB2 : Elizabeth Fenjves, Ph.D (17:56): Thank you Dr. Fenjves!

Jon : (17:56): You are welcome back any time

Jon : (17:57): To find out more about the Diabetes Research Institute and Dr. Fenjves go to <a href=”http://www.diabetesresearch.org”>www.diabetesresearch.org</a>

Posted in Diabetes Research, Past Chat Transcripts | No Comments »

Dr. Alberto Pugliese of DRI

December 8th, 2009

Dr. Alberto Pugliese says to (16:58):Hello

Jon says (16:58):Hi Dr. Pugliese

Jon says (16:59):Hopefully we will get a few more people rolling in here in a minute

Dr. Alberto Pugliese says to (16:59):Hello Jon

Dr. Alberto Pugliese says to (17:02):Not a problem, we can start anytime even with a few people

AllieB2 says to (17:03):oh good I have a few questions, whenever you’re ready to take them, Dr. Pugliese. {smile_smiley}

Dr. Alberto Pugliese says to (17:03):ready

AllieB2 says to (17:03):Hi, I’m Allie Beatty, by the way {smile_smiley}

Dr. Alberto Pugliese says to (17:03):nice to chat with you Beatty

Dr. Alberto Pugliese says to (17:03):sorry, I meant Allie

AllieB2 says to (17:03):lol

AllieB2 says to (17:04):
no problem.

AllieB2 says to (17:04):
my question has to do with the antigen and thymus relationship, regarding the insulin producing cells…

Dr. Alberto Pugliese says to (17:04):
OK, what is the question?

AllieB2 says to (17:04):
is it true that islets are not the ONLY insulin-producing cells in the body?

Dr. Alberto Pugliese says to (17:06):
yes that is true. other cells, including cells in the thymus and neurons can produce insulin. However, that insulin is not produced in a way that it has effects on sugar levels

AllieB2 says to (17:06):
is it more homeostasis functions?

Dr. Alberto Pugliese says to (17:07):
the insulin produced by neurons has mostly local effects, the insulin produced in the thymus helps educating the immune system to prevent unwanted reactions against insulin-producing cells – we call that self-tolerance

Jon says (17:09):
I attended a diabetes symposium at UCSF a couple of weeks ago, and they were studying Omega 3 fish oil to prevent diabetes. Is this something you have heard of, and do you think there is a possibility there?

Dr. Alberto Pugliese says to (17:10):
yes. there is a clinical trial that has just started to explore the feasibility of this approach and later whether it prevents the development of diabetes
Jon says (17:10):
What would you say is the most promising research you have seen?

Dr. Alberto Pugliese says to (17:10):
the idea is the omega 3 fatty acids stimulate an appropriate regulation of the immune system

AllieB2 says to (17:11):
Is this at all similar to the effects of Vitamin D3?

Dr. Alberto Pugliese says to (17:12):
this would work like a dietary supplementation and it would be given to children who are at risk of diabetes (genetically) at birth or during pregnancy, continuing on after birth

Dr. Alberto Pugliese says to (17:13):
the effects would be complementary with that of vitamin D, but because vitamin supplemetation has been increased already this is an effect that is hard to study

Dr. Alberto Pugliese says to (17:14):
There is a lot of promising research, I am excited about new ideas about using people own’s cells to treat autoimmunity

AllieB2 says to (17:14):
that would be incredible!

Jon says (17:14):
are you talking about stem cells?

AllieB2 says to (17:14):
do you think it is possible to “retrain” the attacking T-cells to NOT attack our islets?

Dr. Alberto Pugliese says to (17:16):
There is a lot of data already, from many laboratories, so it is actually pretty credible. I am talking about certain types of immune cells, in particular dendritic cells, which can eliminate bad T cells or promote the formation of regulatory T cells that

Dr. Alberto Pugliese says to (17:16):
would control the bad T cells

AllieB2 says to (17:17):
:-D

AllieB2 says to (17:17):
as a scientist, who is aware of other scientists’s work — what is your opinion of Dr. Faustman’s research?

Dr. Alberto Pugliese says to (17:19):
it has been hotly debated, as you know. I am more of the opinion that much of her original claims were not confirmed. Also, I fail to see the rationale to do another trial with BCG, which has been done already and shown not to be effective.

Dr. Alberto Pugliese says to (17:19):
Also, such a trial would not be a translation of the protocol she used in the mice

Jon says (17:20):
Do you think Diabetes is Genetic?

AllieB2 says to (17:20):
yes, i had heard the original “cocktail” was much stronger (if that’s the right word to describe it)

Dr. Alberto Pugliese says to (17:21):
sure. there are several genes involved, we have identified several, and more are going to be discovered in the future. Remember that genes do not cause diabetes in every person, but make it more likely for the disease to develop

Julie says to (17:21):
Similarly I fail to see why Dr. Skyler needs to repeat the oral insulin trials which have proven ineffective for the most part – yet he continues to tie up trial-net funds

Jon says (17:22):
so where are you in the regulatory t-cell research? What is the next step?

Dr. Alberto Pugliese says to (17:22):
the oral insulin trial did show that there was a protective effect in those patients that had insulin autoantibodies. The data were statistically significant, with statistical analysis performed blindly by independent teams of statisticians

Dr. Alberto Pugliese says to (17:23):
if you think about it the results are telling us that those who had an immune response to insulin (antibodies) were those who benefited from the treatment – it makes a lot of sense

Julie says to (17:23):
Respectfully, isn’t presence of anti-GAD more predictive of onset of type 1 than insulin autoantibodies?

Julie says to (17:25):
I’m much more interested in your research Dr. Pugliese

Dr. Alberto Pugliese says to (17:25):
Julie, you are correct, but it depends on age groups too. In young children insulin autoantibodies are strong predictors too. Also remember that autoantibodies are just one aspect of the immune response, and we need to improve our ability to study T cells

Dr. Alberto Pugliese says to (17:26):
also, there is a lot of research from humans and mice that shows that insulin is a required antigen for the development of diabetes, while GAD is not. having said that, GAD is an important autoantigen too

Dr. Alberto Pugliese says to (17:26):
HI to the people who just joined, please shoot questions

Jon says (17:27):
Tonights topic is REVERSING AUTOIMMUNITY

renee says to (17:27):
hello this is my first time here

Julie says to (17:27):
What is being done to look at reversing autoimmunity without the use of immunosuppressants?

Jon says (17:28):
Hi Renee. Do you have any questions about Diabetes research for Dr. Pugliese?

renee says to (17:28):
not right now..I came on to learn more

Dr. Alberto Pugliese says to (17:29):
a lot. for one, the trials with specific antigens such as insulin and GAD. then, we are strating to use short term immunosuppressive drugs together with antigen to kill off the bad T cells and reeducate the new ones

Jon says (17:30):
What would you say is your biggest obstacle in your research?

Dr. Alberto Pugliese says to (17:30):
plus there is a lot of research on the dendritic cells and regulatory T cells, as mentioned before

AllieB2 says to (17:30):
is the use of “short-term” immunosuppressant drugs safer in terms of developing cancer (or not) in the long-term?

Tracey says to (17:30):
Do you have any thought on rituxibab to stop the ongoing destruction of beta cells in the body. Even if rituximab works, it will still be necessary to take insulin shots.

Dr. Alberto Pugliese says to (17:31):
there are many obstacles, but possibly the biggest one is the difficulties in obtaining funding, since the NIH budget has not been increased appropriately

Julia says to (17:32):
In your opinion…The big question… will there be a cure BEFORE a vaccine?

Dr. Alberto Pugliese says to (17:32):
yes, short term immnusuppression should be safer. also it changes the approach from chronic suppression to short term suppression followed by the stimulation of regulatory responses and proper immune function

Julie says to (17:32):
I question why the rituximab studies are done in otherwise healthy children with new onset type 1 – I think the first trials should be done in adults. Children can’t make the decision for themselves whether or not to be subjected to the unknown.

Dr. Alberto Pugliese says to (17:33):
re Rituximab: if it works, if we break the circle, there is a chance that enough beta cells may survive that one may not need to take insulin

Dr. Alberto Pugliese says to (17:34):
also, even if one takes insulin proper metabolic control will be easier to obtain, and there should be fewer hypoglycemias

Julie says to (17:34):
The potential toxic effects are far too heavy in my opinion to outweigh the possible benefits

Dr. Alberto Pugliese says to (17:35):
finally, if we correct autoimmunity maybe we can start seeing some regeneration or stimulate it

Julie says to (17:35):
Why do you think there is such an increase in type 1 – especially in populations that have newly immigrated to a new country? Yesterday I read that Somali residents of Minnesota are presenting with type 1

Dr. Alberto Pugliese says to (17:36):
as regards the study in children, arguments can be made that the disease is primarily a disease of children, and thus a treatment should be tested in them. also, rituximab has been used in other conditions. In the end there was a decision that involved

Dr. Alberto Pugliese says to (17:36):
many people, taking into account ethics and safety

Dr. Alberto Pugliese says to (17:38):
We don’t know why diabetes is becoming more frequent. there could be both environmental factors and the effects of genetic admixture of populations that emigrate

Dr. Alberto Pugliese says to (17:39):
the idea is that mixing genes from different populations may bring together gene combinations that favor diabetes

Julie says to (17:40):
Dr. Pugliese, in a person who has not yet presented with type 1 diabetes but has a sibling with it, what A1C would you think is telling that onset will occur?

rob6465 says to (17:40):
What is a good range for a person’s A1C ?

Dr. Alberto Pugliese says to (17:41):
any level above the normal range, usually normal range is between 4-6, depending on the assay used

Jon says (17:41):
How is the thymus involved?

renee says to (17:42):
Is there such a thing as autoimmune screening?

Dr. Alberto Pugliese says to (17:42):
the thymus, early in life, controls the shaping of the immune system

Dr. Alberto Pugliese says to (17:42):
the thymus is the place where autoreactive T cells are eliminated

AllieB2 says to (17:42):

Dr. Pugliese — is DRI working on a way to externally develop dendritic cells for individuals (based on their own existing dendritic cells) that could be used to *retrain* their immune system to tolerate insulin-producing cells?

Dr. Alberto Pugliese says to (17:43):
sometimes, this process is imperfect and some auto reactive T cells may survive – these may later cause disease

rob6465 says to (17:43):
Is there any relation with diabetics and Rest Leg Syndrome ? I’m diabetic since 2001 and i’m 40 and started developing RLS about 1 yr ago.

Dr. Alberto Pugliese says to (17:43):
allie: yes, this is what we are trying to do

Dr. Alberto Pugliese says to (17:44):

we are using a particular type of dendritic cells that we have discovered in the thymus and later found to exist also in blood

AllieB2 says to (17:44):
are you currently taking samples from people of their dendritic cells? or are you using animals to research?

Dr. Alberto Pugliese says to (17:44):
these cells express insulin on their surface, we think they use it to interact with the T cells to control their reactivity and prevent that they attack the beta cells

Jon says (17:45):
Do you think that consumption of omega 3 in the mother can prevent diabetes in their offspring?

Dr. Alberto Pugliese says to (17:45):
Allie: we are studying both patients and mice

AllieB2 says to (17:46):
I’d like to volunteer my dendritic cells for you to study {smile_smiley}

AllieB2 says to (17:46):
21 years type 1, under the belt

Dr. Alberto Pugliese says to (17:46):
Jon: this is what the trial will eventually answer, I think it is possible that we will see an effect

Dr. Alberto Pugliese says to (17:46):
thank you Allie

Julie says to (17:47):
Would the same hold true for siblings of children with type 1 – should they increase their consumption of omega 3 to reduce inflammation and perhaps delay insulitis?

Jon says (17:47):
How will you select patients to study?

Dr. Alberto Pugliese says to (17:47):
Julie: yes, it might, but only a trial can prove that
*** (17:48):Welcome to Dr. Alberto Pugliese Chat , Cyndee !

Dr. Alberto Pugliese says to (17:48):
Jon, which study?

Jon says (17:48):
the dendritic cell study

Dr. Alberto Pugliese says to (17:49):
We have been studying patients and their family members, including those with autoantibodies. There is no restriction on age or duration of diabetes.
*** (17:50):Tracey quit the room

Julie says to (17:50):
In what areas of research is genetic therapy being tried on humans today? Do you anticipate FDA will ever approve gene therapy for human trials in type 1 diabetes?

Dr. Alberto Pugliese says to (17:52):
Julie: one disease where gene therapy has shown promise is ADA deficiency. There are possible applications for gene therapy also in type 1 diabetes, but we are not at the point of FDA approval yet.

Julie says to (17:53):
I sincerely appreciate your dedication to understanding type 1 diabetes and how complex it is….it just seems difficult to envision it will ever be “cured”

Jon says (17:53):
we have about 5 minutes left, if anybody has any more questions.

Dr. Alberto Pugliese says to (17:54):
it is difficult, but there are lots of good people working on it, so I am hopeful

Julie says to (17:54):
I believe the DRI people are tops…absolutely focused and dedicated

Jon says (17:54):
Thanks a lot for taking time out of your busy schedule to be here tonight Dr. Pugliese

Dr. Alberto Pugliese says to (17:54):
thank you Julie, we do our best

Dr. Alberto Pugliese says to (17:55):
Thank Jon, it has been a pleasure

Julie says to (17:55):
Any opinion on potential for encapsulated porcine islets to restore euglycemia?

Jon says (17:55):
I hope we can chat with you again in the near future

Dr. Alberto Pugliese says to (17:55):
surely

AllieB2 says to (17:56):
Thank you Dr. Pugliese!

Dr. Alberto Pugliese says to (17:56):
there is progress in the field of encapsulation too, we have to wait and see

Jon says (17:56):
As always, we will post a transcript of this chat in case anybody missed any part of it

Julie says to (17:56):
What about using one’s own stem cells ?

Dr. Alberto Pugliese says to (17:57):
that is something that we and other people are pursuing. but also remember that even if you are able to make new beta cells you still need to prevent the immune system from destroying them again.

AllieB2 says to (17:58):
do you believe it *is possible* to retrain the immune system to NOT attack islets?

Julie says to (17:58):
I always think when you and your colleagues together come up with something safe enough to use in Dr. Kenyon’s daughter, then I’ll try it {laugh_smiley}

Dr. Alberto Pugliese says to (17:58):
yes, this is our goal

Dr. Alberto Pugliese says to (17:59):
I agree, safety is paramount.

AllieB2 says to (18:00):
I’m confident with the technological and scientific advances these days — you’re research will pioneer the cure for autoimmune diabetes.

Julie says to (18:00):
If you care to answer, what made you interested in type 1 diabetes in particular?

Jon says (18:00):
if anybody should have more questions, do you have an email where they can get in touch with you?

Dr. Alberto Pugliese says to (18:00):
when i was a young physician I was involved with the care of newly diagnosed children

Dr. Alberto Pugliese says to (18:01):
often, i was sad when their siblings would later developed diabetes and frustrated because I could not cure them

Dr. Alberto Pugliese says to (18:01):
my e-mail is apuglies@med.miami.edu

Dr. Alberto Pugliese says to (18:02):
thank you for the confidence, Allie

Julie says to (18:02):
You’re a treasure Dr. P…we’re lucky to have you on our side.

Gina says to (18:02):
Hi everyone sorry i am late

AllieB2 says to (18:02):
Thank you, Dr. Pugliese. You and your work is remarkable!

Gina says to (18:02):
sorry DR. P

grace says to (18:03):
Hello Dr. P, where is your practice?

Dr. Alberto Pugliese says to (18:04):
I don’t practice anymore, I just do research. I work at the Diabetes Research Institute in Miami
*** (18:06):Welcome to Dr. Alberto Pugliese Chat , reese !

Gina says to (18:06):
Dr. P: I know I am late and im not sure if anyone asked this but, do you know why people get type 1 in their 20’s

grace says to (18:07):
What is your opinion of the insulin pump &amp; do you have a brand preference?

Dr. Alberto Pugliese says to (18:07):
some people do. many others get diabetes much younger, and some when they are older.

Gina says to (18:07):
i got type 1 6 yrs ago at age 25

Dr. Alberto Pugliese says to (18:08):
I am removed from the clinic so I am not current on pumps, but I think they work well for a lot of people. Hopefully there will be soon some pumps with integrated glucose monitoring

Gina says to (18:08):
that would be nice

Gina says to (18:08):
like what the jdrf is doing with the artificial pancreas project

Dr. Alberto Pugliese says to (18:08):
there are already continuous monitoring systemts, so integration should be possible

AllieB2 says to (18:08):
Dr. P — do you know if certain viruses (like chicken pox) might alter the body’s immune response that would *trigger* an attack on islets?

Dr. Alberto Pugliese says to (18:09):
Gina: yes, that is related to what JDRF is doing

Dr. Alberto Pugliese says to (18:09):
there are a number of viruses that have been linked to diabetes, especially coxcackie and rotavirus

renee says to (18:10):
is there such a thing as autoimmune screening with people with type 1?

Dr. Alberto Pugliese says to (18:10):
Renee: sorry I did not get to you before. Yes, we can screen for autoantibodies, which are highly specific for type 1 diabetes

Dr. Alberto Pugliese says to (18:11):
you can also screen for other autoimmune diseases

Gina says to (18:11):
i am really interested in why i got diabetes so late. i mean does something trigger it off?

Gina says to (18:12):
could i have prevented getting it?

renee says to (18:12):
That is ok dr.P my son was dx’d with kawawaski disease at age 2 we often wondered if there was a link to him now having type 1

Dr. Alberto Pugliese says to (18:12):
at some point the immune system is triggered to attack the beta cells. we do not know what the trigger or trigger may be. Also, the destructive process may proceed at different speed in different individuals

Dr. Alberto Pugliese says to (18:12):
nobody knows how to prevent it yet

Gina says to (18:13):
maybe not prevent, prolong

Gina says to (18:13):
if i ate better or something

Jon says to Dr. Alberto Pugliese (18:13):
If Gina had locked herself in a sterile room for 25 years, would she still have diabetes?

grace says to (18:13):
what would be the reason for screening for autoantibodies?

Dr. Alberto Pugliese says to (18:14):
probably. experimental mice get more diabetes in sterile conditions that if exposed to germs

Gina says to (18:15):
Dr. P: how are you guys trying to reverse autoimmunity&gt;

Dr. Alberto Pugliese says to (18:15):
you would screen to identify a person that is likely to develop diabetes. knowing that can help you have an early diagnosis, reducing the risk of complications at onet, and it also empowers you to consider participating in a prevention trial

Dr. Alberto Pugliese says to (18:15):
jon: I meant probably not

bjphilly says to (18:16):
how would you know who to screen?

Gina says to (18:16):
are there any trials going on right now that you think anyone here could qualify for?

Dr. Alberto Pugliese says to (18:16):
gina, i don’t think you could have done anything. most times diabetes develops in families with no history
*** (18:16):pookas quit the room

DFC says to (18:16):
I have no history of it in my family and I have it

Dr. Alberto Pugliese says to (18:17):
usually it is appropriate to screen first degree relatives, they have a higher risk

bjphilly says to (18:17):
I was adopted and did not know the history of family.

Gina says to (18:17):
DR. P: its funny in my family, (on my mothers side) my grandmothers brother got type 1 at age 21, my moms sister got type 1 at age 30 and i got type 1 at age 25, 1 each generation

Dr. Alberto Pugliese says to (18:18):
current trials usually enroll individuals with autoantibodies but no diabetes and patients with recent onset

DFC says to (18:18):
DR P what is the likely hood of my kids having diabetes if I were to have them?

bjphilly says to (18:18):
who are 1st degree relatives?

Dr. Alberto Pugliese says to (18:18):
Gina: that sometimes happens, and it tells you that there are genetic factors involved

Gina says to (18:19):
so my kids, my sisters kids and my first cousins kids can be at risk right?

Dr. Alberto Pugliese says to (18:20):
first degree relatives are parents or siblings of a patient. The risk to children of a patient is probably 4-7%

DFC says to (18:20):
that is not bad

DFC says to (18:20):
thank Dr for answering my questions

grace says to (18:20):
my son adam is type 1 and has the following question…Why do I always feel low after eating cookies to bring my blood sugar back up when I know I’m high enough?

Dr. Alberto Pugliese says to (18:20):
yes, relatives have a higher risk, but the risk is low, so that odds are in favor that they will not develop diabetes

BetterCell says to (18:21):
Hello, sorry I am late.

Gina says to (18:21):
Dr. P, even though at least one person each generation in my family has developed type 1 over the age of 20?

Gina says to (18:22):
the risk is low?

Dr. Alberto Pugliese says to (18:22):
Grace: to bring the sugar up after it is low it is better to eat food with complex sugars, like bread. Cookies have more sugar but it burns fast, so blood sugar levels may drop again

Gina says to (18:22):
ah thats good to know

Gina says to (18:22):
is that why they say chocolate is not a good option for bringing up a low?

bjphilly says to (18:22):
I use pretzels and crackers sometimes Grace

Gina says to (18:23):
they say pretzels are the fastest

Dr. Alberto Pugliese says to (18:23):
Gina: I was referring in general. There are families in which 2, 3 sometimes even more siblings get diabetes and even other autoimmune diseases.

grace says to (18:23):
When I test and I’m high, how come I don’t feel any symptons?

BetterCell says to (18:23):
is there any information available on how to prevent as well as treat Hypoglycemia Unawareness?

bjphilly says to (18:23):
they are gina

renee says to (18:23):
another words my son is type so I am at risk of developing diabetes

Dr. Alberto Pugliese says to (18:24):
Grace: high sugars do not cause much symptoms, unless very high for prolonged times

Dr. Alberto Pugliese says to (18:25):
BetterCell: yes, there is information, I can’t summarize for you here but you should be able to find it on the internet, I think. If not e-mail me.

Dr. Alberto Pugliese says to (18:25):
Renee: technically yes, but probably at very low risk

Gina says to (18:25):
better cell: Linda Gonder-Frederick, Ph.D. actually did a chat about hypo unawareness last year, here is the transcript link if you want to read it <a href=”http://diabetestalkfest.com/chattranscripts/2006/lindagonder.php”>http://diabetestalkfest.com/chattranscripts/2006/lindagonder.php</a>

renee says to (18:26):
My son walks around for days with high blood sugars he is a teen now and recently has had a lot of sick days

BetterCell says to (18:26):
Thank you Dr. Pugliese. However, I do not have your Email Address.

grace says to (18:26):
you are being such a help, how often do you do these chats? My son adam is 10 and he has a lot of questions but needs to go to bed now?

Dr. Alberto Pugliese says to (18:26):
I posted the e-mail address earlier on this chat. I am sure we can do another chat.

BetterCell says to (18:27):
Thank you Gina

Jon says to (18:27):
Dr. Puglieses e-mail is apuglies@med.miami.edu. It will also be on the transcript.

Gina says to (18:27):
better cell: here is a list of other chats we have done <a href=”http://diabetestalkfest.com/transcripts.html”>http://diabetestalkfest.com/transcripts.html</a>

bjphilly says to (18:28):
Grace <a href=”http://www.childrenwithdiabetes.com”>www.childrenwithdiabetes.com</a> is a good website for you and your son

DFC says to (18:28):
This is good information {smile_smiley}

rickst29 says to (18:29):
hypo unawareness CAN be treated with bio-feedback awareness training… but my preferred treatment is a continuous glucose monitor (I’m pt., not MD or RN)

BetterCell says to AllieB2 (18:30):
Since I came in late this might have already been discussed, my feeling about transplantation is that it is not very successful and the risks of being on Life-Long Immunosuppressive therapy is not very good. Is there anything more viable available for those

BetterCell says to AllieB2 (18:31):
of us w/T1DM?

Dr. Alberto Pugliese says to (18:32):
I agree, transplantation needs to improve and what we need is to be able to prevent rejection and autoimmunity without immunosuppression. That is difficult to do. However, because that is so critical for many diseases, there is a lot of people trying to

Dr. Alberto Pugliese says to (18:33):
solve these problems.

grace says to (18:33):
thanks for your help dr. p, we need to leave the chat room for now,

Dr. Alberto Pugliese says to (18:33):
my pleasure

Dr. Alberto Pugliese says to (18:35):
If it’s OK with you I will retire, if there are no more questions

DFC says to (18:35):
I have to go as well. Thank you Dr. P

Gina says to (18:35):
Dr. P thank you so much for coming

BetterCell says to (18:35):
Grace, Could I have that site Address again, I cannot retrieve it. Thanks.

renee says to (18:35):
Thankyou Dr.P

Dr. Alberto Pugliese says to (18:35):
Thanks for hosting me, Gina

BetterCell says to (18:36):
Thanks Dr. Pugliese

Gina says to Dr. Alberto Pugliese (18:36):
I hope you will be able to chat again!

bjphilly says to (18:36):
thank you for your time Dr. Pugliese

AllieB2 says to (18:36):
Thank you, Dr. P!!

BetterCell says to (18:36):
Hello Allie

BetterCell says to (18:38):
So,…..What is available for T1DM at this time besides the taking of Insulin?

bjphilly says to (18:38):
Insulin is the elixir of life for us.

Dr. Alberto Pugliese says to (18:39):
Nice chatting with everybody, good night

bjphilly says to (18:39):
there is also Symlin which we could use with insulin to help those spikes

BetterCell says to (18:39):
Yes, I know….However T1DM continues to be a Disease that involves more than Insulin. It is a Multi-factor Illness rather than singular.

renee says to (18:40):
so true bettercell

bjphilly says to (18:40):
I’m well aware having lived with it for almost 50 years

renee says to (18:41):
How about your teen years … did you always comply philly?

BetterCell says to (18:41):
If a person w/T1DM has Gastro paresis….then it does exactly the same as Symlin and is in fact contraindicated for those w/gastroparesis.

renee says to (18:42):
can symlin be given through a pump?

Girl23dk says to (18:42):
I’m having such a hard time “getting used” to living with 1DM. Does it get any easier bj?

bjphilly says to (18:42):
my educator uses it through a pump

bjphilly says to (18:43):
NO

BetterCell says to (18:43):
Symlin basically slows down the digestion and Gastro paresis does it as well. There is a belief in the Gastro Community that most T1DM will develop gastro paresis because of Neuropathy related to T1DM

Girl23dk says to (18:43):
to bad {flush_smiley}

renee says to (18:43):
I thought so philly someone told me different

bjphilly says to (18:44):
research has helped us to manage better then years ago, I must say. no more boiling of glass syringes and purer insulin and of our pumping

Girl23dk says to (18:45):
thats a good thing. In that way it’s easier…..

BetterCell says to (18:45):
Yes, that is All True bjphily,,,,,,,,the management is better, but the Complications REMAIN!!

bjphilly says to (18:45):
yes it is 23

bjphilly says to (18:46):
I must say that things have improved except there is no cure

bjphilly says to (18:46):
yes there are still complications

bjphilly says to (18:47):
but with better education those complications can be delayed

Girl23dk says to (18:47):
you have to have a lifelong friendship with your Diabetes

bjphilly says to (18:47):
yes we do

BetterCell says to (18:47):
In my opinion, things have not improved that much over time. Things HAVE improved for IRD(aka Type 2 Diabetes) but not for T1DM!!

bjphilly says to (18:48):
but using information that is available it helps

bjphilly says to (18:48):
Bettercell how long have you had Diabetes

BetterCell says to (18:49):
I am still aware of Physicians here in NYC that appear more comfortable and better able to interact w/IRD than T1DM

renee says to (18:49):
it was nice chatting with all of you have a great night and good numbers

bjphilly says to (18:49):
having seen 50 years of improvement I can’t agree with you

bjphilly says to (18:50):
nite Renee

BetterCell says to (18:50):
I have had T1DM since I was six…….so that would be over 25 years.

bjphilly says to (18:51):
when you were 6 do you remember in order to find out where your bgs were you had to pee in a test tube and parents dropped in a pill or used a tape to meaire sugar

bjphilly says to (18:51):
meaire=measure

BetterCell says to (18:52):
The only “Improvement” is that of ACE Inhibitors and Cholesterol Lowering Drugs….In Reality there has not been much of an “Improvement” despite all the HYPE that you seem to be involved with.

Gina says to (18:52):
whoa

bjphilly says to (18:53):
that’s because I was a teen and was responsible for taking care of my D. That’s why I appreciate what we have today.

BetterCell says to (18:53):
Good Management Techniques are just that……However the problems associated with T1DM as being a “permanent “Member of your Family” remain

bjphilly says to (18:54):
it was like being in the “dark ages” no information as it is today

Gina says to (18:54):
bettercell do you have a blog

BetterCell says to (18:55):
Yes my Blog Site devoted to T1DM is: bettercell.blogspot.com It is entertaining as well as filled w/Wisdom and Personal Stories.

Gina says to (18:55):
oh yeaaaaaaaaaa

Gina says to (18:56):
i knew i knew you

Gina says to (18:56):
lol

BetterCell says to (18:56):
How do you know me?

Gina says to (18:56):
from your blog

BetterCell says to (18:56):
I have not seen you there.

Gina says to (18:56):
i dont comment

Gina says to (18:56):
just read

BetterCell says to (18:56):
Oh..

Gina says to (18:56):
i lurk

BetterCell says to (18:56):
That’s OK

Gina says to (18:56):
i lurk everyone

Gina says to (18:57):
i used t o try to comment on everyone’s but its just too many now

Gina says to (18:57):
i cant keep up

BetterCell says to (18:59):
Getting back to the “Dark Ages”….Physicians (Endocrinologists) that are out there, still appear to be more available for IRD than T1DM. The reason, is that it is easier to treat and that there is more$$ made available. To treat T1DM well, a Physician mus

bjphilly says to (19:00):
I’m aware of what you are saying

BetterCell says to (19:00):
must be Intelligent, focused and not look at their Watches as often as they do. I feel that the BEST PHYSICIAN for T1DM is YOURSELF!!

Posted in Diabetes Research, Past Chat Transcripts | No Comments »

Dr. Juan Bendala of DRI

December 8th, 2009

kerry says to (16:46):
I’m thinking the DRI should be transplanted to India, Australia, Israel or somewhere where they allow stem cell research to continue unhampered.

kerry says to (16:47):
I am only half joking!

DRI CheerLeader says to (16:47):
I think DRI collaborates with researchers in other countries

kerry says to (16:48):
Yes, I know they do. Isn’t FLA trying to pass a law to prevent all stem cell research from taking place in the state?

*** (16:49):Welcome to Dr. Juan Bendala Chat , bp !

gina says (16:49):
i really dont understand why they wont allow it

gina says (16:49):
hi bp

DRI CheerLeader says to (16:49):
I wouldn’t be surprised – as one Bush left office
*** (16:50):Welcome to Dr. Juan Bendala Chat , Dr. Juan Bendala !

kerry says to (16:50):
We still have to wait for a Dem to be elected Pres. and perhaps a year or so after that to change legislation federally.

gina says (16:51):
Hello Dr. Bendala

DRI CheerLeader says to (16:51):
It seems the subject isn’t in the news so much anymore

Dr. Juan Bendala says to (16:51):
Hello. I just logged in.

gina says (16:51):
WElcome!
Dr. Juan Bendala says to (16:52):
Thanks!

kerry says to (16:52):
Isn’t in the news because it is a lost cause unless a Dem gets elected Pres.

DRI CheerLeader says to (16:52):
Hi Dr. Juan DB

Dr. Juan Bendala says to (16:52):
Hello everybody

gina says (16:52):
the chat will start in like 10 minutes

kerry says to (16:52):
Welcome, Dr. Bendala.

gina says (16:52):
officially

Dr. Juan Bendala says to (16:52):
We’ll wait until then

DRI CheerLeader says to (16:52):
I think we have to keep it in the news – ask for articles to be written

gina says (16:52):
you can still chat though

*** (16:52):Welcome to Dr. Juan Bendala Chat , jonhedrich !

Dr. Juan Bendala says to (16:52):
let’s chat, then!

DRI CheerLeader says to (16:52):
I don’t know if I can wait 10 minutes LOL:D

gina says (16:53):
well

gina says (16:53):
i will ask how is the weather in miami today!

Dr. Juan Bendala says to (16:53):
humid, hot… the usual

DRI CheerLeader says to (16:53):
Dr. Juan – what is the status of stem cell research in the state of Florida? Are they trying to ban it or just not support any public funding?

*** (16:53):Welcome to Dr. Juan Bendala Chat , allysmomma !

gina says (16:53):
You probably dont remember but i met you in miami in 2004!

*** (16:54):allysmomma quit the room

Dr. Juan Bendala says to (16:54):
I am not sure about that. What I know is that the DRI will keep doing work on embryonic stem cells no matter what the legislation is. I don’t think a ban will happen. They may ban the use of State funds, but that’s another story

DRI CheerLeader says to (16:54):
I didn’t vote for Bush or Charlie Christ

Dr. Juan Bendala says to (16:54):
Hello, Gina… perhaps you can refresh my memory

gina says (16:56):
You were the only scientist at the DRI there that day… August 2004… you were there for the tour i was on with gary

Dr. Juan Bendala says to (16:56):
Well, all the tours are with gary… but I am sure that if I saw you I would remember.

DRI CheerLeader says to (16:56):
She’s the hot one.

*** (16:56):Welcome to Dr. Juan Bendala Chat , BadShoe !
*** (16:57):Welcome to Dr. Juan Bendala Chat , grossman9318 !

DRI CheerLeader says to (16:57):
Oh sorry about that emotion thing

Dr. Juan Bendala says to (16:57):
It’s all right, I liked it

gina says (16:58):
that was so weird haha

DRI CheerLeader says to (16:58):
So what’s new in stem cell research at DRI? When asked, I request that people direct their donations to your lab.

*** (16:58):Welcome to Dr. Juan Bendala Chat , glorijeff !
*** (16:59):Welcome to Dr. Juan Bendala Chat , yd !

Dr. Juan Bendala says to (16:59):
I appreciate that very much. But all the work we do at the DRI is important, not just that in my lab. We are attacking diabetes from every possible angle. The supply problem (which we are tackling with stem cells) is only one facet.

gina says to grossman9318 (private) (17:00):
hello

Dr. Juan Bendala says to (17:00):
Immunological tolerance, for isntance, is as important. we wnat to replace the missing cells once and for all. The body must learn to recognize the transplanted cells as “self”, and not reject them again and again.

grossman9318 says to gina (private) (17:00):
hello gina

Dr. Juan Bendala says to (17:00):
In our lab we are presently working with a variety of stem cells, both adult and embryonic. Both have pros and cons. We want to cover our backs and not put all the eggs in one basket.

*** (17:01):Welcome to Dr. Juan Bendala Chat , AllieB2 !

kerry says to (17:01):
Does the recent discovery of Drs. Trivedi and Vanikar from Ahmedabad regarding mesenchymal cells (which will protect transplanted cells from being rejected) have an impact on your research?

Dr. Juan Bendala says to (17:02):
The idea is to expand these stem cells… which they do quite well by themselves. From one single vial of embryonic stem cells we can get billions of them in a matter of days. The challenge is not expanding them, but differentiating them along the beta cel

Dr. Juan Bendala says to (17:02):
…beta cell lineage.

DRI CheerLeader says to (17:02):
Have you managed to produce any cells that are glucose responsive?

Dr. Juan Bendala says to (17:02):
They don’t like to become beta cells… if given the choice, they’ll rather become neurons or heart tissue. We must educate them against their will to become beta cells.

*** (17:03):Welcome to Dr. Juan Bendala Chat , BetterCell !
gina (17:03):
How do you do that?

DRI CheerLeader says to (17:03):
You have to make them an offer they can’t refuse

gina says (17:03):
lol

kerry says to (17:03):
LOL

Dr. Juan Bendala says to (17:03):
We’ve got cells that have all the chartacteristics of pancreatic progenitor cells. In other words, they have an immature beta cell signature. New advances in our lab are shaping new ways to mature them. For instance, what we call “the oxygen sandwich”

bp says to (17:04):
Not able to stay for the entire chat.

Dr. Juan Bendala says to (17:04):
The idea is simple. We don’t want to reinvent the wheel. nature makes beta cells very well.

gina says to bp (private) (17:05):
thats ok i will have a chat transcript of this entire chat tomorrow

Dr. Juan Bendala says to (17:05):
We need to mimic nature. And one thing that nature does is to bathe stem cells in oxygen if they are to become beta cells. Islets are only 1 % of the pancreas, but they receive more than 25% of the total blood flow (and therefore oxygen) to the organ.

Dr. Juan Bendala says to (17:05):
Nobody thought that oxygen could be so important to differentiate stem cells into islets. But we have made a major breakthrough with a new system of our invention.

Dr. Juan Bendala says to (17:06):
By placing stem cells in these “oxygen sandwiches”, which are special petri dishes where cells receive air borth from the top and the bottom, they became beta cells 100-fold more efficiently than in regular dishes.

AllieB2 says to (17:06):
does the pH surrounding the islet transplant location have much to do with the success rate?

BetterCell says to (17:06):
O2 is needed for the creation and development fora ll life, which includes beta cells.

DRI CheerLeader says to (17:07):
So do you think some kind of oxygen deprivation occurs to kill off the islets in the pancreas ?

*** (17:07):Welcome to Dr. Juan Bendala Chat , Jeff !

AllieB2 says to (17:07):
pH imbalance can skew the ability to utilize oxygen effienently, can’t it?

Dr. Juan Bendala says to (17:07):
In type I diabetes, beta cells are destroyed by an autoimmune attack. But at the end of the day, diabetes damages blood vessels. Without healthy blood vessels, there is oxygen deprivation, so they will die more easily.

Dr. Juan Bendala says to (17:08):
Yes indeed.
*** (17:08):bp quit the room

Dr. Juan Bendala says to (17:09):
Most people around the world are trying to mimic only the molecular soup that leads to islet development. We are pioneering the recapitulation of a physiological environment (namely oxygen). We have found that the latter is as important, if not more.

Dr. Juan Bendala says to (17:09):
You are welcome to visit our lab and we’ll show you these devices. Our results have already been accepted for publication in a major journal and will be publicised shortly
BetterCell says to (17:09):

Dr. Bendala….which of all the current modalities being pursued do you think will come to be available for T1DM and Insulin Independence?

Dr. Juan Bendala says to (17:10):
Do you mean stem cell approaches, or in general?

BetterCell says to (17:10):
General in a clinical sense.

DRI CheerLeader says to (17:10):
I’d like to see a video on the DRI website – a virtual tour for those of us who cannot get down to Miami. Could that be done?

Dr. Juan Bendala says to (17:10):
About the video, I can see about that.

gina says (17:10):
that would be a great idea!

BadShoe says to BetterCell (17:10):
So what is to keep the autoimmune attack fro killing of any beta cell from stem cells?

Dr. Juan Bendala says to (17:10):
As for the strategies:

*** (17:11):Welcome to Dr. Juan Bendala Chat , Richard !

Dr. Juan Bendala says to (17:11):
Yes, that’s precisely the point. We have to put stem cell-derived beta cells, no doubt about that. But we also need to make the immune system prevent the attack.. Otherwise,. it will never end.

Dr. Juan Bendala says to (17:11):
And there are new approaches to do that.

BetterCell says to (17:11):
Modulation and desguies of those cells.

Dr. Juan Bendala says to (17:12):
Recently, a multidisciplinary team lead by our collaborator Julio Voltarelli, in Brazil, presented preliminary data showing that it might be possible to reset the immunological clock prior to the onset of the disease.

Dr. Juan Bendala says to (17:12):
Reprogram the autoimmune system, in toher words.

*** (17:12):Jeff quit the room

BadShoe says to BetterCell (17:12):
wow woul dthat reprogem work for things other than T1

BetterCell says to (17:13):
That does not benefit those of us w/T1DM already developed.

Dr. Juan Bendala says to (17:13):
The approach worked only in newly diagnosed patients, but 14 out of 15 patients got a complete reversal of the disease. very encouraging!!!

*** (17:13):lilkittykt quit the room
*** (17:13):Welcome to Dr. Juan Bendala Chat , lilkittykt !

DRI CheerLeader says to (17:13):
Is he the same Brazilian researcher who published last year and there was quite a bit of press including JAMA?

AllieB2 says to (17:13):
what was your opinion of the Brazilian approach to *knock out* the entire immune system before the stem cell transplant to *cure* Type 1 Diabetes? (earlier this year)

BetterCell says to (17:14):
That is too dangerous to do Allie.

DRI CheerLeader says to (17:14):
But some of them seemed to have LADA as I recall and didn’t they use immunosuppression?

Dr. Juan Bendala says to (17:14):
Yes, that is the problem. In order for this method to work, the body must have some residual beta cells that will replicate as soon as the autoimmune attack is blocked. That’s why, with Dr. Ricordi, we are now working on a double approach consisting in inf

kerry says to (17:14):
So if you cannot prevent autoimmune attack, transdifferentiation, training the liver, say to take on the job of the pancrease would only invite attack of the liver? If it could be done…

Dr. Juan Bendala says to (17:14):
…infusing stem cells and stropping the autoimmune attack.
*** (17:15):Welcome to Dr. Juan Bendala Chat , sixuntilme !

Dr. Juan Bendala says to (17:15):
Too many people at the same time. Sorry if I don’t get to you on time.

Dr. Juan Bendala says to (17:15):
This is indeed the brazilian study in JAMA. very controversial, because they didn’t have the appropiate controls. That’s why we are replicating it in a multinational study.

*** (17:16):lilkittykt quit the room
*** (17:16):Welcome to Dr. Juan Bendala Chat , lilkittykt !

DRI CheerLeader says to (17:16):
Are they communicating follow up data with you Dr. DB? Have the same people not relapsed?

Dr. Juan Bendala says to (17:16):
Transdifferentiation is indeed another startegy. Liver cells can be forced to produce insulin. They don’t do it as well as the islet, but… hey, they will escape the immune system. Your body is programmed to destroy beta cells, but these are liver cells.

AllieB2 says to (17:17):
Has your lab noticed if TNF-alpha has anything to do with the success rate of transplanted stem cells?

Dr. Juan Bendala says to (17:18):
We are in constant communication. Some people have relapsed, yes. It seems that the immune system cannot be fooled indefinitely. But this is only a first trial. More and more refined protocols will follow, and we are hopeful.

Dr. Juan Bendala says to (17:18):
And answering another question, yes, this method can also be used to treat other autoimmune disorders.

Dr. Juan Bendala says to (17:19):
TNF-alpha and inflammation go hand by hand. Inflammation will kill the islets upon transplantation, very quicly.

kerry says to (17:19):
Clinical trials are soon to take place in India regarding those cells which are back-up cells for insulin production and can be transplanted directly into the liver? Somehow, I don’t think the Indian version of the FDA will provide too much resistance.

Dr. Juan Bendala says to (17:19):
That’s why we need to follow a multidisciplinary approach. I make beta cells from stem cells.

DRI CheerLeader says to (17:19):
Well the Republicans cited that study all through the stem cell debate touting that diabetes had been cured using adult stem cells…while they left out all the details

Dr. Juan Bendala says to (17:19):
Other colleagues arrest the autoimmune response.

Dr. Juan Bendala says to (17:20):
Others tackle inflammation. We work as a team. A cure won’t come only from one discipline.

AllieB2 says to (17:21):
I agree with you, Dr. Dendala! The more information complied from *teams* of experts, the more everybody has to work with :)

*** (17:21):lilkittykt quit the room
*** (17:21):Welcome to Dr. Juan Bendala Chat , lilkittykt !
AllieB2 says to (17:21):
Bendala

DRI CheerLeader says to (17:21):
Would you be willing to comment on what you think of the encapsulated porcine islet transplants that are taking place in Russia in humans using LCT protocol?

Dr. Juan Bendala says to (17:21):
We must use all the tools in our hands. TWe welcome progress wherever it comes from, be it from adult or from embryonic stem cells. What they forgot to mention about the promise of these adult stem cells…

BetterCell says to (17:21):
I guess the Pharmaceurical Industry will not be very happy when the need for less Insulin becomes a Reality?

Dr. Juan Bendala says to (17:22):
is that it didn’t work at all in cases of long-standing diabetes. There, you need beta cell replacement in addition to adult stem cells for the immune system. And so far, the most promising at doing that are the embryonic.

Dr. Juan Bendala says to (17:23):
We are indeed pursuing encapsulation as a promising avenue of research. But the challenges are many. For one thing, encapsulation tends to choke the islets. And they need oxygen, as I mentioned above.

AllieB2 says to (17:23):
is it possible to harvest *embryonic* stem cells from the umbilical (sp?) cord?
*** (17:23):glorijeff quit the room

BadShoe says to BetterCell (17:23):
for a lay person what are the significant differances between embryonic and adult for making beta cells

Dr. Juan Bendala says to (17:23):
is it possible to harvest *embryonic* stem cells from the umbilical (sp?) NO

Dr. Juan Bendala says to (17:24):
uMBILICAL CORD CELLS, AGAINST COMMON WISDOM, ARE NOT EMBRYONIC. THEY ARE ADULT.

Dr. Juan Bendala says to (17:24):
THEY ARE EQUIVALENT TO THE BONE MARROW. GOOD FOR ARRESTING AUTOIMMUNE PROCESSES, BUT SO FAR THE EVIDENCE OF THEM TURNING INTO BETA CELLS IS VERY SCANT. BUT WE ARE ALSO LOOKING INTO THAT!

*** (17:24):Welcome to Dr. Juan Bendala Chat , bjphilly !
*** (17:24):Welcome to Dr. Juan Bendala Chat , StinkyHarriet !

Dr. Juan Bendala says to (17:24):
ADULT VS EMBRYONIC

BetterCell says to (17:25):
There ids more Differentation in Embryonic cells to take place. badshoe, I am not the guest Speaker. Thank you for the compliment though.

Dr. Juan Bendala says to (17:25):
EMBRYONIC STEM CELLS DIVIDE FOEREVER. YOU CAN GET BILLIONS IN DAYS. ADULT STEM CELLS DIVIDE A FEW TIMES AND THEN STOP.

Dr. Juan Bendala says to (17:25):
EMBRYONIC CELLS CAN BECOME ANY CELL TYPOE OF THE BODY. ADULT STEM CELLS, ONLY A HANDFUL.

Dr. Juan Bendala says to (17:25):
NO PANCREATIC ADULT STEM CELLS HAVE BEEN FOUND YET.

DRI CheerLeader says to (17:25):
Is there a risk of cancer developing from using embryonic stem cells?

Dr. Juan Bendala says to (17:26):
THERE IS A SMALL CHANCE. WE ARE CURRENTLY TRYING TO AVOID IT. ALLOW ME TO EXPLAIN.

BadShoe says to Dr. Juan Bendala (17:26):
so it like adults they get lazy and tired and the kids run forever wearing the adults out – lol

*** (17:27):Welcome to Dr. Juan Bendala Chat , tsmom !

Dr. Juan Bendala says to (17:27):
EMBRYONIC STEM CELLS DIVIDE ALL THE TIME, EXCEPT WHEN THEY DIFFERENTIATE. THEN THEY STOP. BUT WHAT IF ONE ROGUE STEM CELL DOES NOT DIFFERENTIATE, ONE IN A MILLION? IT COULD KEEP GROWING INSIDE THE PATIENT AND FORM A TUMOR CALLED TERATOMA.

Dr. Juan Bendala says to (17:27):
THAT’S WHY WE HAVE GENETICALLY ENGINEERED EMBRYONIC STEM CELLS SO THAT THEY CONTAIN TWO SUICIDE GENES.

Dr. Juan Bendala says to (17:27):
ONE OF THEM IS ACTIVATED WHEN THE CELL KEEPS DIVIDING AFTER TRANSPLANTATION. ONE ROGUE CELL IN A MILLION WILL SELF-DESTROY.NO QUESTIONS ASKED.

AllieB2 says to (17:27):
suicide genes — sounds *serious*!

kerry says to (17:28):
You guys think of everything, LOL! Wonderful!

Dr. Juan Bendala says to (17:28):
THE SCEOND SUICIDE GENE WILL ACTIVATE IF THE CELL BECOMES SOMETHING DIFFERENT FROM A BETA CELL (A NEURON, OR A HEPATOCYTE…). AGAIN, IF THE CELL DOESN’T GO IN THE DIRECTION WE WANT, IT WILL SELF-DESTROY./

BadShoe says to (17:28):
how do you do that

Dr. Juan Bendala says to (17:29):
WE PUT THESE GENES INTO ES CELLS. THEY JUST WAIT, SILENT… UNTIL THE CELL DOES SOMETHING BAD. THEN THEY BECOME ACTIVATED.

*** (17:29):bjphilly quit the room

Dr. Juan Bendala says to (17:30):
THIS IS ONLY ONE APPROACH, BUT IT IS NECESSARY. THE VERY SAME THING THAT MAKES ES CELLS SO APPEALING CAN ALSO BE A CURSE. BUT WE HAVE BEEN ABLE TO HARNESS THIS.

Dr. Juan Bendala says to (17:31):
PLUS, WE ARE MOVING ISLET TRANSPLANTATION TOWARDS THE USE OF SUBCUTANEOUS DEVICES. THERE, THE CELLS WILL BE ENTRAPPED AND NO POSSIBILITY OF TUMOR COULD EVER OCCUR. BUT IF THERE IS ONE POSSIBILITY IN A BILLION, WE WANT TO TAKE CARE OF THAT.

Dr. Juan Bendala says to (17:31):
NO MORE QUESTIONS?

BadShoe says to (17:32):
SUBCUTANEOUS DEVICES can you ‘explain what taht means

kerry says to (17:32):
Islet transplantation, will it ultimately be a therapy or a cure, or both?

Dr. Juan Bendala says to (17:32):
THEY ARE LITTLE CAPSULES THAT ARE IMPLANTED UNDER THE SKIN. WE LET THEM VASCULARIZE FOR A COUPLE OF WEEKS,. THEN WE INJECT THE ISLETS INTO THE DEVICE.

*** (17:33):StinkyHarriet quit the room

Dr. Juan Bendala says to (17:33):
THE ADVANTAGES ARE MANY-FOLD: YOU COULD DELIVER LOCAL IMMUNOSUPPRESION (INSTEAD OF SYSTEMIC) AND ISLES ARE EASILY ACCESIBLE.

Dr. Juan Bendala says to (17:33):
ISLET TRANSPLANTATION WILL BE A PART OF THE CURE. ULTIMATELY, HOWEVER, WE NEED TO TEACH THE IMMUNE SYSTEM NOT TO DESTROY THE BETA CELLS

Dr. Juan Bendala says to (17:34):
WE CALL IT TOLERANCE INDUCTION.

BadShoe says to (17:34):
so the islets would be in this “capsule”?

*** (17:34):Welcome to Dr. Juan Bendala Chat , Martin2043 !

gina says to Dr. Juan Bendala (17:34):
do you need anti rejection drugs still?
*** (17:34):yd quit the room

kerry says to (17:34):
I’m guessing no.

Dr. Juan Bendala says to (17:34):
YES. BUT IT IS NOT A MICROSCOPIC CAPSULE. IT IS MACROSCOPIC. WE ARE WORKING ON THIS. IT WILL PROBABLY BE THE FUTURE OF ISLET TX. REMEMBER, THE LIVER IS A BAD SITE.

BetterCell says to AllieB2 (17:34):
Dr Bendala……Can you give us a Time-Frame, when all this positive Stuff will be made available (at least in Human Trial)?

Dr. Juan Bendala says to (17:35):
HALF OF THE ISLETS DIE DURING ISOLATION. ANOTHER HALF OF THAT DIES UPON TX IN THE LIVER BECAUSE OF INFLAMMATORY PROCESSES. ONLY WHAT’S LEFT IS WHAT WORKS!

Dr. Juan Bendala says to (17:35):
YOU MAY NEED ANTI-REJECTION DRUGS… BUT LOCALLY, INSIDE THE DEVICE. NOT GENERAL. THAT WOULD BE A MAJOR BREAKTHROUGH.

Dr. Juan Bendala says to (17:36):
TIME FRAME

BetterCell says to AllieB2 (17:36):
Yes…

kerry says to (17:36):
Can enough islets be produced then as a therapy for all Type 1s or just selected few?

Dr. Juan Bendala says to (17:36):
IT IS DIFFICULT TO SAY, BUT I CAN TELL YOU THAT EMBRYONIC STEM CELLS ARE SCHEDULED TO BE USED IN THE FIRST HUMAN CLINICAL TRIUALS FOR THE END OF THIS YEAR. IT WILL BE FOR SPINAL CORD INJURY.

Dr. Juan Bendala says to (17:36):
RATS WITH SPINAL CORD INJURY WERE ABLE TO WALK AGAIN AFTER ES CELL TRANSPLANTATION.

Dr. Juan Bendala says to (17:36):
DIABETES WILL BE THE NEXT TO FOLLOW.

kerry says to (17:37):
Racehorses come before us! They are using it for the racehorses.

AllieB2 says to (17:37):
LOL

BetterCell says to AllieB2 (17:37):
Racehiorses are G-D’s Children as well.

AllieB2 says to (17:37):
lol

gina says (17:37):
lol

Dr. Juan Bendala says to (17:37):
WELL, IF THESE CELLS WERE TO HAVE AN UNEXPECTED SIDE EFFECTS, BETTER TO TRY THEM FIRST ON ANIMALS…

Dr. Juan Bendala says to (17:38):
BUT WE DON’T THINK SO.

kerry says to (17:38):
LOL

BadShoe says to (17:38):
yeah have you seen a trifecta hit?

Dr. Juan Bendala says to (17:38):
WE WON’T TRANSPLANT ES CELLS UNTIL WE PROVE THAT THEY ARE PERFECTLY SAFE. AND WE THINK THEY WILL BE.

gina says (17:38):
how do you know when they are safe?

kerry says to (17:38):
You do know how to cheer us all up!

Dr. Juan Bendala says to (17:39):
USING OUR SUICIDE GENE STRATEGY, THEY ARE 100% SAFE.

BetterCell says to AllieB2 (17:39):
Then I will no longer have to be concerned abouut getting enough of C-peptide, which Endogenous Insulin does not supply!!

gina says (17:39):
suicidal genes! that could be a r ock group lol

kerry says to (17:39):
I don’t expect miracles to happen overnight, but if miracles can happen, it may very well happen at the DRI.

Dr. Juan Bendala says to (17:39):
THIS IS A PROCESS, AND I KNOW THAT YOU ARE ALL IMPATIENT. I AM TOO! I JUST WANT TO CURE DIABETES AND THEN MOVE TO ANOTHER DISEASE!

gina says (17:39):
kerry i say that all the time!

gina says (17:40):
We cant help being impatient! Diabetes stinks….

BadShoe says to (17:40):
that could be a rock group lol Dave Berry

kerry says to (17:40):
This disease is so complicated, how can you put an immediate timeframe on it? But perhaps use of islet transplantation without immunosuppressants will be a good therapy in the meantime.

Dr. Juan Bendala says to (17:40):
ADVANCES IN STEM CELL RESEARCH ARE UNPRECENDENTED IN THE HISTORY OF SCIENCE. EVERY OTHER WEEK WE SEE AN IMPORTYANT BREAKTHROUGH.

BadShoe says to (17:40):
Where is a URL we can follow the progress

Dr. Juan Bendala says to (17:41):
DIABTES IS COMPLICATED. THAT’S WHY WE NEED TO WORK AS A TEAM, FROM STEM CELL BIOLOGISTS TO IMMUNOLOGISTS.

kerry says to (17:41):
I think we should all get out there and beat the bushes for money for the DRI. I will give New York Chapter a call.

*** (17:41):Martin2043 quit the room
gina says (17:42):
this is the link to the DRI website <a href=”http://www.diabetesresearch.org/”>http://www.diabetesresearch.org/</a>

DRI CheerLeader says to (17:42):
DRI is awesome – I’ve personally toured many times. The researchers are so approachable, dedicated, focused.

Dr. Juan Bendala says to (17:42):
ELIMINATING IMMUNOSUPPRESION WOULD BE A MAJOR BREAKTHROUGH. BUT STILL, WE ONLY GET A HADFUL OF PANCREATA EVERY YEAR, AND THERE ARE 18 MILLIOJN PEOPLE WITH T1D IN THE WORLD. WE ALSO NEED ALTERNATIVE SUPPLIES OF ISLETS.

*** (17:43):Welcome to Dr. Juan Bendala Chat , JB !

Dr. Juan Bendala says to (17:43):
YOU ARE ALL WELCOME TO TOUR THE DRI. WE’LL SHOW YOU EVERYTHING, FROM A STEM CELL TO AN ISLET.

gina says (17:43):
DR. B why do you think people develop type 1 later… for example i was 25 at diagnosis..

Dr. Juan Bendala says to (17:43):
WE WORK IN SUCHG A WAY THAT ANY PROMISING FINDING AT THE BASIC SCIENCE LEVEL CAN BE IMMEDIATELY TRANSLATED INTO CLINICAL THERAPIES.

BadShoe says to (17:43):
were is it

gina says (17:44):
badshoe DRI is in Miami

gina says (17:44):
near south beach….

Dr. Juan Bendala says to (17:44):
T1D IS VERY COMPLEX. WE DON’T KNOW MUCH ABOUT THE FACTORS THAT TRIGGER THE ONSET. SOME PEOPLE ARE GENETICALLY PREDISPOSED, BUT WON’T DEVELOP IT UNTIL AN ENVIRONMENTAL TRIGGER COMES.

BadShoe says to (17:44):
… well when yo put it that way…

gina says (17:45):
i dont know even know what would have t riggered it…

*** (17:45):Welcome to Dr. Juan Bendala Chat , anderdn !

Dr. Juan Bendala says to (17:46):
IN MICE PREDISPOSED TO DIABETES, THERE ARE MORE THAN A HUNDRED WAYS YOU CAN PREVENT IT FROM HAPPENING… FROM CHANGING THE DIET TO PLACING THEIR CAGE AT EYE LEVEL… IT IS CRAZY. BUT HUMANS ARE COMPLETELY DIFFERENT.

BetterCell says to AllieB2 (17:46):
IThere have not been any major breakthroughs for T1DM for a long time oththan Insulins with Depleted C-peptide.

Dr. Juan Bendala says to (17:46):
IN THE STEM CELL FIELD, THERE HAVE BEEN MANY

gina says (17:46):
my aunt was diagnosed with type 1 at 31

kerry says to (17:46):
The later the better… although it is harder to adjust mentally.

*** (17:46):JB quit the room

BetterCell says to AllieB2 (17:47):
But not clinically, Dr. Bendala.

gina says (17:47):
tell me about it kerry!

Dr. Juan Bendala says to (17:47):
A YEAR AGO, THE FRIST COMPLETE PROTOCOL FOR ES CELL DIFFERENTIATION INTO BETA CELLS WAS PUBLISHED IN NATURE BIOTECH. THIS YEAR, THE FRIST STUDY TO RESET THE IMMUNE CLOCK WAS PUBLISHED. THESE STUDIES ARE STILL PRELIMINARY, BUT…

*** (17:47):Welcome to Dr. Juan Bendala Chat , piesconfort04 !

BadShoe says to (17:47):
so i should put the non D kids cage .. er.. rooms at eye level – ya learn something new every day

kerry says to (17:47):
Just to give us hope, in a ten year time frame, what do you see possibly ocurring?

Dr. Juan Bendala says to (17:48):
THEY ARE A FIRST STEP. WHILE CONTROVERSIAL, THE BRAZILIAN STUDY IS THE FIRST EVER TO REVERSE DIABETES. SOME PATIENTS ARE NOW RECURRING, BUT NOW WE HAVE A BASELINE TO IMPROVE UPON. AND WE WILL.

Dr. Juan Bendala says to (17:49):
IMAGINE IF YOU COULD RESET YOUR IMMUNE CLOCK TO A TIME PRIOR TO THE ONSET OF THE DISEASE, AND THEN GIVE YOUR PANCREAS A BOOST OF STEM CELL-DERIVED BETA CELLS. I SEE THAT HAPPENING IN THE NEXT 10 YEARS, CERTAINLY. IT WOULD BE MUCH CLOSER TO A CURE…

DRI CheerLeader says to (17:49):
I recall at least one of the Brazilian recipients was off insulin prior to the intervention…it’s been a long time since I read that study but I was not encouraged as I’m unwilling to have my child receive toxic immunosuppression with unknown long term re

DRI CheerLeader says to (17:49):
results

Dr. Juan Bendala says to (17:49):
THAN ANYTHING WE MAY HAVE ENVISIONED FIVE YEARS AGO.

Dr. Juan Bendala says to (17:50):
YES… THE BRAZILIAN STUDY USED A VERY TOXIC IMMUNOSUPPRESANT. WE ARE WORKING ON ALTERNATIVES. AT THE END OF THE DAY, YOU WANT THIS PROCEDURE TO BE SAFE.

gina says (17:50):
yea thats all we need diabetes and something else along with hit

gina says (17:50):
it

Dr. Juan Bendala says to (17:50):
ALL I CAN SAY IS THAT WE ARE WELL AWARE OF THE RISKS, BUT THE OVERALL PICTURE IS OPTIMISTIC.

kerry says to (17:51):
Sis was thinking you could transplant islet cells re the Brazilian therapy and since autoimmunity addressed… but of course since they are not the pt’s own islet cells, same problem?

Dr. Juan Bendala says to (17:51):
IN OUR LAB, WE HAVE DISCOVERED THAT OXYGEN ALONE, SOMETHING THAT WE BREATHE EVERY DAY, MAY BE INSTRUMENTAL IN GETTING AN UNLIMITED SUPPLY OPF BGETA CELLS FROM STEM CELLS.

Dr. Juan Bendala says to (17:51):
WE DIDN’T KNOW THAT TWO YEARS AGO! IT ALL ADDS UP.

*** (17:52):Welcome to Dr. Juan Bendala Chat , sstrumello !

kerry says to (17:52):
If a Dem gets elected, do you foresee broad leaps in your research? With federal funding. FINALLY……

kerry says to (17:53):
Getting the right person in the White House may be the most important thing right now.

BetterCell says to AllieB2 (17:53):
This has NOTHONG to do w/politics Kerry.

Dr. Juan Bendala says to (17:53):
THE IDEA WITH THE BRAZILIAN STUDY WOULD BE TO MAKE YOUR OWN INSULIN CELLS REGENERATE. OTHERWISE, WE COULD INFUSE NON-MATCHED ISLETS, WHICH MIGHT REQUIRE IMMUNOSUPPRESION. HOWEVER, IF WE PLACED THE ISLETS IN A SELF-CONTAINED DEVICE, IT WOULD BE LOCAL.

DRI CheerLeader says to (17:53):
Federal funding certainly has to do with politics.

kerry says to (17:53):
Federal Funding for embryonic stem cell research has everything to do with tonights topic, IMHO.

BadShoe says to (17:54):
yeah but I have heard the politic and I haven’t heard teh science

AllieB2 says to (17:54):
Politicians (both Dem and Rep) are driven by *big bucks* — “Big Bucks” come from Big Businesses..

Dr. Juan Bendala says to (17:54):
LET ME ASSURE YOU THAT WE’LL PURSUE THIS WORK WITH AND WITHOUT FEDERAL FUNDING. THE DRI, THANKS TO OUR FOUNDATION, IS NOT LIMITED. IT WOULD BE BETTER TO HAVE MORE MONEY, BUT OUR BENEFACTORS ARE MANY, AND OUR GOAL IS CLEAR.

AllieB2 says to (17:54):
and that might adversely affect any potential treatment that would **CURE** a disease like diabees :(

kerry says to (17:54):
MUST have Federal funding for embryonic stem cell research for Dr. Bendala’s research. Money = cure.

DRI CheerLeader says to (17:55):
And it would be better if you could comingle the research that is federally funded with that of your lab that is not.

sstrumello says to Dr. Juan Bendala (17:55):
What are your thoughts about Geron Corp. culturing beta cells in vitro that were responsive to blood glucose levels, something which failed in previous efforts&gt;

Dr. Juan Bendala says to (17:55):
THE LATTER IS COMPLICATED.

BetterCell says to AllieB2 (17:55):

Money does not=cure, science and intelligence and blessing does.

kerry says to (17:56):
And as I believe DRI scientist told me, while I was in the audience at Hyatt, many brilliant researchers will go into other areas of research because that is where the money is.

BadShoe says to (17:56):
Does the strain of stem cells make a differance

Dr. Juan Bendala says to (17:56):
THE GERON STUDY: WE PUBLISHED ONE YEAR EARLIER A VERY SIMILAR PROTOCOL, BUT FOR MOUSE EMBRYONIC STEM CELLS. AT THIS POINT WE ARE REPLICATING THE GERON STUDY IN OUR LAB. TOO EARLY TO SAY, BUT ON PAPER IT LOOKS PROMISING.

Dr. Juan Bendala says to (17:57):
THE STRAIN OF THE CELL DOES MAKE A DIFFERENCE. EVERY CELL LINE HAS A DIFFERENT BEHAVIOR

Dr. Juan Bendala says to (17:57):
WE NEED TO WORK WITH THE ONES THAT BEST END UP MAKING INSULIN.

BadShoe says to (17:57):
so is it likely that a strain that works in one case will not work in another

Dr. Juan Bendala says to (17:57):
OTHERS PREFER TO BECOME BRAIN TISSUE, OR MUSCLE.

DRI CheerLeader says to (17:58):
Do you have any contact with the Argentinian Dr. Vina who is also trying to use autologous stem cells for diabetes? I believe his research with cardiac cells was productive.

Dr. Juan Bendala says to (17:58):
YES, THAT’S ABSOLUTELY THE CASE, AND HAPPENS ALL THE TIME. THAT’S WHY WE NEED MANY CELL LINES.

*** (17:58):Welcome to Dr. Juan Bendala Chat , d !

sstrumello says to Dr. Juan Bendala (17:58):
Are mice studies terribly relevant, given the tremendous differences in cytoarchitechture between rodent and human beta cells?

Dr. Juan Bendala says to (17:58):
WE ARE COLLABORATING WITH DR ESTRADA, ALSO FROM ARGENTINA. HISD APPROACH LOOKS VERY PROMISING. DR VINA, HOWEVER, SEEMS TO BE… WELL, NOT VERY RIGOROUS.

BadShoe says to (17:58):
is there consistant behavior in a give stem line or is it YDMV (your diabetes may vary)

BadShoe says to (17:59):
given

Dr. Juan Bendala says to (17:59):
MOUSE STUDIES ARE RELEVANT, BUT ONLY TO CERTAIN EXTENT. IT IS A LIMITATION WE HAVE TO LIVE WITH.

*** (17:59):tsmom quit the room

BetterCell says to AllieB2 (18:00):
NYC has lots of Rodents.

Dr. Juan Bendala says to (18:00):
STEM CELLS BEHAVE DIFFERENTLY DEPENDING ON MANY FACTORS. THE TECHNICIAN, FOR INSTANCE… AT TIMES, CULTURING THEM IS MORE AN ART THAN A SCIENCE.

DRI CheerLeader says to (18:00):
Do you collaborate at all with Doug Melton?

*** (18:00):Welcome to Dr. Juan Bendala Chat , StillTYpeI !

Dr. Juan Bendala says to (18:00):
MELTON IS A FOREMOST SCIENTIST IN THE AREA. WE DON’T HAVE ANY DIRECT COLLABORATION WITH HIM AT THIS TIME, BUT HE HAS SENT TO US SEVERAL HUMAN ES CELL LINES AND OTHER MATERIALS.

*** (18:01):Welcome to Dr. Juan Bendala Chat , d2095 !

Dr. Juan Bendala says to (18:02):
LET ME CONCLUDE WITH A FEW REMARKS. DIABETES IS A VERY COMPLEX DISEASE AND A CURE WON’T COME FROM ONE SINGLE MAGIC APPROACH. AT THE DRI, WE ARE FOCUSED ON TACKLING IT FROM ALL ITS DIFFERENT ANGLES.

gina says to Dr. Juan Bendala (private) (18:02):
Hey, Dr. Bendala the chat is over but if you want to still answer questions its up to you. if you can stay that is

*** (18:02):Welcome to Dr. Juan Bendala Chat , chelsea !

Dr. Juan Bendala says to (18:02):
PROGRESS IS VERY FAST. I DON’T THE ENTIRE FIELD OF “REGENERATIVE MEDICINE” WAS UNHERD OF 10 YEARS AGO…

DRI CheerLeader says to (18:03):
I wish you much success Dr. DB. You give us hope because there are dedicated researhers such as yourself who care enough to search for a cure. I for one am so grateful for your dedication.

gina says to Dr. Juan Bendala (18:03):
and me as well. Thank you for doing this chat!

sstrumello says to (18:04):
Thanks for chatting with us this evening Dr. Bendala!

kerry says to (18:04):

I as well. Thank you for your time and dedication.

Dr. Juan Bendala says to (18:04):
WE KEEP MAKING PROGRESS EVERY DAY, AND IT IS THE ADDITION OF EVERY LITTLE SUCCESS THAT GETS US CLOSER TO A CURE. THAT IT WILL HAPPEN, I HAVE NO QUESTION ABOUT IT. TO MAKE IT AVAILABLE TO EVERYBODY AS SOON AS SPOSSIBLE IS OUR PRIORITY.

BetterCell says to AllieB2 (18:04):
I am glad that you are Optimistic.

Dr. Juan Bendala says to (18:05):
I THANK YOU ALL FOR YOUR CONTINUOUS SUPPORT AND ENCOURAGEMENT. REST ASSURED THAT WE KEEP WORKING ON A CURE EVERY DAY. PLEASE COME VISIT US ANY TIME. JUST CALL OUR FOUNDATION AND THEY’LL ARRANGE A TOUR.

grossman9318 says to (18:05):
as a dri supporter i thank you all for this chat

sixuntilme says to (18:05):
Thanks for the informative chat.

DRI CheerLeader says to (18:05):
I hope to see the virtual tour of you and your lab on the DRI website

BadShoe says to (18:05):
Thanks

Dr. Juan Bendala says to (18:05):
IF YOU HAVE ANY ADDITIONAL QUESTIONS, YOU CAN E-MAIL ME AT jdominguez2@med.miami.edu

kerry says to (18:05):
One of the most informative chats I’ve participated in. Thanks much.

gina says (18:05):
Thank you so much!

Dr. Juan Bendala says to (18:05):
Thank you all. Best

AllieB2 says to (18:05):
thank you, Dr. Bendala!! And Thank you, DRI!

*** (18:05):anderdn quit the room

gina says (18:05):
thanks DR. b

*** (18:06):d quit the room
*** (18:06):AllieB2 quit the room

kerry says to (18:06):
Wow. Thanks, Gina!

gina says (18:06):
This chat will be available on the DTF website t omorrow!

gina says (18:06):
kerry! thanks!

*** (18:06):chelsea quit the room

gina says (18:06):
next chat is september 5

kerry says to (18:06):

Oh, yeah. I will print out a copy!

gina says (18:06):
with the makers of charmr

sstrumello says to (18:06):
Thanks, Gina … this was great … even though I stepped in pretty late … I can’t wait to see the transcript!

DRI CheerLeader says to (18:07):
Maybe Dr. DB could appear on DLife

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