*** (08:51):Welcome to JDRF CGM Chat with Aaron Kowalski , Dr. Aaron Kowalski !
jon says (09:01):Welcome everybody to tonights chat with Aaron Kowalski!
jon says (09:02):Let's get started
gina says to (09:02):Ok everyone here we go
jon says (09:02):Aaron, can you give us a brief description of what you do?
Dr. Aaron Kowalski says to (09:03):Hi Everyone - thanks again to Gina for having me back on!
gina says to (09:03):Thank you!
Dr. Aaron Kowalski says to (09:03):So - I'm one of the scientists on staff at JDRF - I head up our Metabolic Control funding
- which includes the JDRF Artificial Pancreas Project
sstrumello says to (09:04):Has JDRF named a new CEO yet?
Dr. Aaron Kowalski says to (09:04):I also oversee our hypoglycemia funding and other metabolic reserarch
Dr. Aaron Kowalski says to (09:04):No new CEO yet. The process is ongoing.
jon says (09:06):what exactly is metabolic control?
pattyk says to (09:06):we have coverage for our 9 year old son for the cgm but took almost a year of appeals > Do you think
this study will make it easier for others to get coverage?
Dr. Aaron Kowalski says to (09:07):This is the research that includes glycemic control but also some of the mechanisms that
lead to the development of type1 aside from autoimmunity
BillRuss says to (09:07):What can we do to get Medicare coverage for DGM?
Dr. Aaron Kowalski says to (09:07):We think the CGM study results will help with insurance coverage.
BillRuss says to (09:07):I mean CGM
Dr. Aaron Kowalski says to (09:08):They say that CGM works and well! Better A1c with no increase in hypo
beanboy says to (09:08):Where will we go with CGM for better accuracy? More development with interstitial fluid reading or
reading a different fluid altogether?
beanboy says to (09:08):in terms of future development
MelissaBL says to (09:08):Is there something specific folks should be stating in their appeals after a preliminary denial?
sstrumello says to (09:08):Why is it that JDRF has funded the major trials on CGMS. The last time I checked, one
manufacturer (Medtronic Minimed) was a $4 billion/year company. It seems to me they should be funding this stuff, not our
charitable foundations.
Dr. Aaron Kowalski says to (09:08):The results in the younger age groups suggest that the CGM works but there are barriers
we need to address to make the devices easier to use for more people
mick says to sixuntilme (09:08):The study included 3 different devices, any differences in accuracy or correlation.
pattyk says to (09:09):I think that will be good...I would like to also see proper education for the people who use the
cgm...there is a learning curve. My son has been using it for 19 months now with a marked a1c decrease without alot of
hypos..but it takes time to learn how to
Dr. Aaron Kowalski says to (09:09):I don't know that the accuracy is the main thing any more. The devices can certainly get
more accurate, but with these devices now people do better - I've used one for more than two years now and couldn't live
without it.
Dr. Aaron Kowalski says to (09:10):What i think we really need is smaller, easier to use and AUTOMATION - hence our focus on
closed loop
beanboy says to (09:10):doesn't closed loop REQUIRE better accuracy? without the 20 minute delay?
Dr. Aaron Kowalski says to (09:11):We didn't compare devices in the study - each person chose their device with their
physician
sixuntilme says to (09:11):I'm hoping this study will help push my insurance appeal through - but is this particular study
geared towards adults only?
gina says to (09:11):Why do people still continue to get denials of the CGM still being experimental and investigational?
AndyRozman says to (09:11):beanboy: and better sensors
Dr. Aaron Kowalski says to (09:11):I think we can close the loop with today's devices - we've funded research in people that
shows that this is the case. What we really need to define is what the precise definition of a closed-loop is.
gina says to (09:12):when is has been proven to be affective
gina says to (09:12):it has
millyyates says to (09:12):How do you use the CGMS to improve pump ettings retrospectively and what is your A1C.
Dr. Aaron Kowalski says to (09:12):I don't know it will be "beta cell-like" but it could bring automation that reduces most
high and low sugars
beanboy says to (09:12):Very interested. With today's technology...that's what you said?
pattyk says to (09:12):that is a huge misconception..it is a algorhythm and if you calibrate properly the numbers are not
too far off unless you have arrows(moving fast) I just checked my son the cgm says 134 and his fingerstick was 136..that is
the way it usually is for us
Dr. Aaron Kowalski says to (09:13):Most of the benefit i see from cgm is the predicitive nature of the device - seeing the
trends and proactively addressing issues before they become big problems
mick says to (09:13):How do we "close the loop" without having IV insulin infusion or sensing?
gina says to (09:13):patty when i was using the cgm that is how it was for me as well.
Dr. Aaron Kowalski says to (09:13):My last A1c was in the mid 6's.
pattyk says to (09:14):that is where the education comes in Gina..I think alot of people are not taught properly how to use
it and calibration and stable sensor are the key
gina says to (09:14):i agree.
Dr. Aaron Kowalski says to (09:14):We don't need iv infusing or sensing - again, we can't let perfection be the enemy of the
good in artificial pancreas. With sophisticated algorithms we could significantly reduce hyper and hypoglycemia and ease some
of the burden - not a beta cell but much
beanboy says to (09:14):I have my CGM range from 10 points to 150+ points off (reading 350 instead of 200)...I think the
accuracy varies a lot, regardless of proper calibration
Dr. Aaron Kowalski says to (09:14):better than today with open loop
pattyk says to (09:14):my sons a1c is 6.8 right now and we don't see alot of hypos. I am able to keep him flat at 100
through the night because of the cgm
Lloyd says to (09:15):I think there are many people who would benifit from cgm on a part time basis, for adjusting basal on
a pump, but might not have a full time need.
gina says to (09:15):aaron can you tell us a little about the JDRF clinical trials
Dr. Aaron Kowalski says to (09:15):To beanboy- remember that there are errors in the system and their is the normal
physiologic difference - the numbers SHOULDN'T always match.
mick says to (09:15):I guess my question is whether "closed loop" is a misnomer. If the patient still has to calculate carb
and decide on insulin doses, the loop is "open" so to speak.
Dr. Aaron Kowalski says to (09:16):To gina: we're funding the CGM trial that was just published in the NEJM - that is still
going, as it will end after everyone has gone 12 months
pattyk says to (09:16):and they don't always but about 95% of the time...we insert our cgm vastly different than the way mm
tells you to but it works
Dr. Aaron Kowalski says to (09:16):We are also funding 7 closed loop sites
Lloyd says to (09:16):How about "semi-automatic" for a description?
MelissaBL says to (09:16):I like that, Lloyd.
gina says to (09:16):can people still get into those trials?
mick says to (09:16):better
Dr. Aaron Kowalski says to (09:17):To mick - the idea is to make it as automated as possible given the nature of today's
sensors. That said you're correct -
it will be at first a semi-closed loop
beanboy says to (09:17):On the whole 'is an IV necessary' question: have you found moving from insulins like humalog to
faster acting ones like apidra is helpful in 'closing the gap/loop' or not necessary due to the advanced algorithm approach?
Dr. Aaron Kowalski says to (09:17):the trials are recruiting people on a limited basis, as they are mostly pilot studies
right now
mick says to (09:18):thank you
MelissaBL says to (09:18):but even "fast-acting" insulins are slower than naturally produced insulins
Dr. Aaron Kowalski says to (09:18):BUT - I think this is going to scale up quickly and you'll be very excited by the results
- THIS CAN BE DONE!
AndyRozman says to (09:18):aaron: but it will never be totally closed loop.. since you need to either enter CH or enter food
(best case scenario)
mick says to (09:18):insulins are tooooo slow in general.
Dr. Aaron Kowalski says to (09:19):To andyrozman - it will really depend on the target bg number. To get to a target for
someone without diabetes it will be tough
Dr. Aaron Kowalski says to (09:19):But - we can get close soon and there are some tricks - for example one of our sites is
doing insulin and glucagon - dual pump
Dr. Aaron Kowalski says to (09:19):Or insulin and symlin - which could be interesting
gina says to (09:20):doesnt symlin make people sick
AndyRozman says to (09:20):mhm. yes that could work...
Dr. Aaron Kowalski says to (09:20):I'm trying to keep up!!:P
mick says to (09:20):Those sound like great studies
Dr. Aaron Kowalski says to (09:20):Symlin has issues now for some people, but I think if was dosed in a much more
sophisticated manner - such as this - we may be able to do much better
millyyates says to (09:21):Medtronic took out patents on a closed loop system in 2003. Why don't they get on with releasing
anything that helps even if it is semi-closed. Why isn't this just seen as another pump algorithm add on or upgrade. Like
bolus on board or bolus wizard?
mick says to (09:21):Are you giving it as a continous infusion or bolus or both?
Dr. Aaron Kowalski says to (09:21):Milly - there are a number of obstacles that the JDRF is aiming to address
jon says (09:22):Let's give the Dr. a minute to catch up on all the questions. If your question is missed, you can send it
to Gina or myself as a private message and we will make sure it gets answered.
Dr. Aaron Kowalski says to (09:22):Regulatory - reimbursement - further clinical testing -
sstrumello says to (09:22):Aaron, beyond the closed loop system, you mention that your role is metabolic Control funding.
Are you pursuing any other possibilities? For example, a company called SmartCells, Inc. in Beverly, Massachusetts is in
pre=clinical trials for a type of insu
sstrumello says to (09:22):insulin that would essentially self-regulate, meaning the insulin would only go to work when
blood glucose levels are elevated above a certain level. This would (theoretically) lead to an elimination of testing,
hypoglycemia and radically simplify managem
Dr. Aaron Kowalski says to (09:23):Will there be a closed-loop without JDRF - yest at some point - but we want to see it
happen SOONER- accelerate by leveraging the strenghts of each consituency
Dr. Aaron Kowalski says to (09:23):We are funding Smartcells - very interesting and exciting - like a micro-artificial
pancreas - I will be there this week!
sstrumello says to (09:24):Excellent, to date, they have been funded with venture capital and some NIH grants!
gina says to (09:25):MelissaBL asked: Can you ask Aaron how the companies who produce the CGMSs have
cooperated or have benefitted from the JDRF's study?
Dr. Aaron Kowalski says to (09:25):I really want to see them make it (obviously)! We have another great scientist working
with me - Marlon Pragnell - who will be working on this too
Dr. Aaron Kowalski says to (09:26):To Melissa - we funded this independently because the insurance companies saw that as
being critical
Dr. Aaron Kowalski says to (09:26):However, we needed help from the companies, for example the Navigator wasn't yet FDA
approved when we started
Dr. Aaron Kowalski says to (09:26):And we used the DexCom SEVEN before it was out on the market
mdavis says to (09:27):regarding Melissa's question, don't companies like Medtronic already donate considerably to jdrf?
sstrumello says to (09:27):Excellent question, considering they stand to profit from JDRF's investments in trials!
Dr. Aaron Kowalski says to (09:28):We do receive some donations from companies, but they are small overall and the vast
majority of the money JDRF raises comes from volunteers - thanks to all of you!
Dr. Aaron Kowalski says to (09:28):Regarding the companies - its important to realize that we rely on them to deliver good
products - if they do its a win win - the JDRF can't manufacture an artificial pancreas
daddy says to (09:29):why not?
mdavis says to (09:30):i think you stumped him with that whopper
Dr. Aaron Kowalski says to (09:30):we're just not set up to do that - that is a massive undertaking and ultimately we are
trying to fill gaps that will lead to acceleration of better solutions for people with diabetes
MelissaBL says to (09:30):True. We need them to develop the product. But I would like to see them make their products
(read: sensors) less cost-prohibitive for those who will choose to go it alone without coverage. The JDRF researches, the
company develops, and we're still broke
sstrumello says to (09:31):I get the sense that the companies are looking for someone else to pay for the research so they
can make even more money, rather than funding trials themselves.
MelissaBL says to (09:31):Thanks, Scott. You say it better.
dwendel says to (09:31):I think once there is a reliable, easy to use and finacially feasable CGMS an artificial pancreas or
closed loop system will be possible.
Dr. Aaron Kowalski says to (09:31):Melissa - we've said all along that we want a competitive markert that supports more
solutions for folks and we hope that will lead to less cost as well
mdavis says to (09:31):yeah but... why not nail the AP and taking control of it start to finish is the best way to get it
done. JDRF invests in companies now (drug companies so far) so why not set up a company to nail the AP?
AndyRozman says to (09:32):MellisaBL: That would be real goal.... CGMS and all their equipment is not covered in my country
and it won't be soon..
mick says to (09:32):I don't think medtronic needs any finanacial support :)
tmana says to (09:32):I think there are some federal regulations against non-profits like JDRF from doing any actual
large-scale manufacturing and marketing
diabeticidol94 says to (09:32):me either
mdavis says to (09:32):...but they overpaid for minimed :D
Dr. Aaron Kowalski says to (09:32):mdavis - we looked at that as an option - but with lots of very smart people thinking
about it decided that our best return on investment was to support the field
sstrumello says to (09:33):medtronic DOESN'T need support, but if some nonprofit pays for the trials, its like corporate
charity
Dr. Aaron Kowalski says to (09:33):and allow for us to do what we do best - de-risk the process and fill gaps and take
advantage of the infrastructure that was in place
dwendel says to (09:33):To a certain extent why would any company want to cure diabetes? Profit wise it does not make
sense!!
MelissaBL says to (09:34):good point, Aaron.
mdavis says to (09:34):maybe more disclosure from JDRF and the CGM companies including intellectual property that's flying
around the space would be a good first step.
diabeticidol94 says to (09:34):absoulity scott
Dr. Aaron Kowalski says to (09:35):mdavis - any ip that is developed with JDRF funding will be available under non-exclusive
licensing
daddy says to (09:35):what about open sourcing the algorithms that were devceloped w/ donated money given to JDRF? shouldn't
that be 'owned' by the community?
diabeticidol94 says to (09:35):AARON are you going to be talking at dri in nyc?
daddy says to (09:35):what is the license cost?
mdavis says to (09:36):ah. that is a good plan
annie keys says to (09:36):If you want to look at 'it' like that, 'why would any of them want to find a cure?', then that
would go for cancer and asthma and even the flu. I don't think the companies feel that way.
Dr. Aaron Kowalski says to (09:37):We are working under ip stuctures that pre-exist at many universities and have worked
very hard - with expert lawyers who donated time - to set up the most fair system to move the field forward
daddy says to (09:37):sure, sun has expert lawyers that help w/ thier open source ;). So how much does a license cost?
AndyRozman says to (09:38):annie: companies don't feel at all, their owners even less
Dr. Aaron Kowalski says to (09:38):ANnie - that is a common misconception. I've worked with (but never at) many of these
companies and most are run by dedicated folks often with a personal connection
Dr. Aaron Kowalski says to (09:38):If they don't drive towards a cure it can be sure their competitors will and they can't
take that risk
sstrumello says to (09:39):What are the remaining obstacles before CGMS becomes more widely covered ... say at the point
where insulin pumps are now fairly routinely covered?
Dr. Aaron Kowalski says to (09:39):Daddy - we haven't gotten to cost yet - we are fuding development at multiple sites and
its still at the research stage
diabeticizme says to (09:39):great question scott
MelissaBL says to (09:40):What does the JDRF need - specifically your department - in terms of community support?
Dr. Aaron Kowalski says to (09:40):Mello - I think the trial results will help a ton
daddy says to (09:40):so there is no license agreemnt yet; but there will be once the research is final, is that right?
will there be a page on jdrf.org w/ license detials?
Dr. Aaron Kowalski says to (09:40):Any we need to address more payer issues as well as issues in the dr.s offices too. I see
these as the two major issues
annie keys says to (09:41):Aaron, I think you misstook somebody elses' answer for what I said. I do NOT think the companies
fail to find a cure because it would mean less profits.(F)
Dr. Aaron Kowalski says to (09:41):Daddy - feel free to email me offline and I can go over the license stuff
daddy says to (09:41):ok thanks
dwendel says to (09:42):Personally as someone who uses CGM and is very into gadgets and technology using CGM is frustrating
and has a very large learning curve. I think for insurance companies to fully embrace it needs to be easier to use and more
reliable, even though
millyyates says to (09:42):Aaron you mentioned early about things moving quickly. Please elaborate.
dwendel says to (09:42):I totally hooked on it and don't use it for up to the minute reults.
gina says to (09:42):i think that anyone that wants a CGM needs to know upfront the work that it takes
Dr. Aaron Kowalski says to (09:42):There is a learning curve but for me - I always joke its all about getting "In an
interstitial fluid state of mind" - yes you can sing it
MelissaBL says to (09:43):LOL
diabeticizme says to (09:43):lol
dwendel says to (09:43):One reason I wear the sensors for 20 days is that getting them up and running is a serious pain
diabeticidol94 says to (09:43):thats my next step cgm. my brother loves his.
MelissaBL says to (09:43):You certainly have to treat the CGMS as a tool for trending rather than a thermostat.
Dr. Aaron Kowalski says to (09:43):If you want the numbers to always match, you'll get frustrated - but that's not what cgm
is all about
sstrumello says to (09:43):Is JDRF doing anything to bring more competition to the market? For example, Abbott has a system
which may (or may not have) been approved, and I think Johnson & Johnson also have something in the pipeline.
gina says to (09:43):i learned it really shows the trends
annie keys says to (09:43):I referred to getting used to my insulin pump as being assimilated into the Borg--remember Star
Trek?
AndyRozman says to (09:43):dwendel: which one's? which CGM do you have
dwendel says to (09:43):Medtronic
dwendel says to (09:43):I love it
dwendel says to (09:44):most of the time my numbers are in sink
Dr. Aaron Kowalski says to (09:44):Mello - we want multiple companies to succeed here - better products, more options,lowe
cost
AndyRozman says to (09:44):and your sensor lasts for 20 days?
diabeticizme says to (09:44):lowe cost is a plus:)
jon says (09:44):Aaron, what can we as individuals do to help you get funding?
dwendel says to (09:44):I think 25 is the longest I have stretched it before the number get crazy
diabeticidol94 says to (09:44):yeah! most defenitely
sstrumello says to (09:44):experience has proven that more competition = better products and lower prices
mdavis says to (09:44):I'm concerned that the commercial opportunity isn't yet great enough and how long will Medtronic,
Dexcom and Abbott keep slugging away at this if they lose money year after year
dwendel says to (09:45):It is all about recharging and keeping your sensor from moving around
Dr. Aaron Kowalski says to (09:45):The JDRF relies on folks like you to do the research - to be advocates (THANKS GINA - A
SUPER ADVOCATE FOR PEOPLE WITH DIABETES) etc...
beanboy says to (09:45):So we have the technology and algorithms so all you need now is time to perfect? You just sound
like you have almost everything you need. Before this chat tonight I thought the hardware itself was years away.
diabeticidol94 says to (09:45):get out there and raise money for jdrf walk like i did this past weekend over one thousand
dollars more coming in
MelissaBL says to (09:46):So the denial campaign raising awareness? The JDRF is pro our complaining? :)
AndyRozman says to (09:46):dwendel: that is great news for me. I plan on getting on pump soon, and I will choose paradigm,
but I wasn't sure if I should buy CGMS stuff too, because sensors are so expensive
mdavis says to (09:46):it is for my little brother - he doesn't like to wear his
Dr. Aaron Kowalski says to (09:46):mdavis - this is one of the huge challenges for us - we need these companies to succeed
and to invest in the next generation of products - that's why JDRF is taking a multi-pronged approach here
gina says to (09:46):thanks Aaron, i help everyone get covered, everyone but me ! i just cant seem to get the CGM
dwendel says to (09:46):Medtronic is very good about replacing them as well. You just need to call them when you have
problems
diabeticizme says to (09:46):your not alone gina
MelissaBL says to (09:46):But Gina, if you'd been approved at first try, would you have caused this online advocacy storm?
mdavis says to (09:46):ok but who is going to fund the gap when they say they are done losing money on this (if that were to
happen) prior to broad reimbursement?
gina says to (09:47):i am grateful of all the people i have helped in the past couple of months they have given me great
tips
MelissaBL says to (09:47):Anyone approved owes it to you in a way.
dwendel says to (09:47):I am more than happy to tudor anyone in CGM!!!
Dr. Aaron Kowalski says to (09:47):Quick diet coke sip - I know folks can appreciate that!
diabeticidol94 says to (09:47):yeah my brothers pump died at 300am he had new one by 900am next day. thank god
diabeticizme says to (09:47):lol where's the paypal link..hahaha
diabeticizme says to (09:48):you are a blessing Gina:) you've done so much
Dr. Aaron Kowalski says to (09:48):Thanks for all that Gina has done here -JDRF also has info about cgm coverage (we've been
linking sites) and need your help to keep pushing here!
dwendel says to (09:48):Insurance companies-Optimum Choice is what you need if you are diabetic!!
annie keys says to (09:48):My pump went whacko on me---Medtronic replaced it within 24 hours.
beanboy says to (09:48):Just a FYI on the 20 day wearing of CGM sensors... I hear 6 days a LOT more than people wearing
their sensors upwards of 10. I wouldn't count on 15 day wear times...I think that is more of the exception than the norm
gina says to (09:48):check out my CGM site
gina says to (09:48):
www.cgm-antidenial.ning.com
dwendel says to (09:48):Yes 15 is average
gina says to (09:48):i have all the info from the jdrf on there
dwendel says to (09:48):my last one was 20 plus
gina says to (09:48):the petition you can sign
gina says to (09:48):insurance companies that have covered
MelissaBL says to (09:48):I don't think the companies producing the cgms will give up. It's a necessary next step toward
whatever else is to come. They can't skip it.
dwendel says to (09:49):recharging the transmiter is key
gina says to (09:49):we have over 2200 signatures on the cgm anti denial petition
dwendel says to (09:49):very true Melissa
diabeticizme says to (09:49):true melissa
gina says to (09:49):melissa yes
Dr. Aaron Kowalski says to (09:49):Melissa - I dont think that they will give up either - but like everyone here - time is
of the essence -
dwendel says to (09:49):The first company that has a closed loop system will make bank!!
MelissaBL says to (09:49):They all want to be first to perfect that closed loop or the artificial pancreas. They know they
have to streamline this cgm
technology.
diabeticidol94 says to (09:50):how long were you on pump before you started cgm?
gina says to (09:50):aaron have you done any studies on women that want to get pregnant or are pregnant wearing the CGM?
Dr. Aaron Kowalski says to (09:50):we need better solutions sooner. That is what the JDRF APP is all about - my family has
been doing this a long time - 30+
years for my brother - almost 25 for me
dwendel says to (09:50):That is why we are the guinea pigs!!
MelissaBL says to (09:50):good question, gina. i'll be a guinea pig!
gina says to (09:50):me too! lol
diabeticizme says to (09:50):me too:)
sixuntilme says to (09:50):G - I saw the article from Ireland that cited pregnant women.
beanboy says to (09:50):idol94: was that to everyone or just aaron?
gina says to (09:50):me too
Dr. Aaron Kowalski says to (09:50):Gina - we haven't - yet - I work closely with Dr. Jovanovic and we've talked about this -
I think it's a pressing need
sixuntilme says to (09:50):And count me in as one of those hopefuls, too.
gina says to (09:51):DR. J was on here not too long ago
diabeticidol94 says to (09:51):anyone looking to go on cgm
diabeticizme says to (09:51):i wish i had one during my first preg
MelissaBL says to (09:51):G, K, DizMe - I feel like we're all on some kind of baby team!
beanboy says to (09:51):I started pump and CGM the same day
Dr. Aaron Kowalski says to (09:51):And yes - there was just an article published this week that says cgm can add significant
value during pregnancy
gina says to (09:51):she told all of us how we need a1c of 6.5
annie keys says to (09:51):I've been an insulin dependent diabetic for 44 years. I'd love to be somebody's guinnea
pig---insurance is out of the question, I'm totally self pay for the last several years.
gina says to (09:51):and i have been on a quest for 6.5 lol
Dr. Aaron Kowalski says to (09:51):I'm sorry if I'm a little behind here - ask a question again if I missed it
sstrumello says to (09:51):
http://www.bmj.com/cgi/content/full/337/sep25_2/a1680
diabeticidol94 says to (09:52):i am 5.4 and so is my brother on cgm . i am not yet on it
sstrumello says to (09:52):Sorry, British Medical Journal did a study on pregnant women at
http://www.bmj.com/cgi/content/full/337/sep25_2/a1680
MelissaBL says to (09:52):thx Scott
beanboy says to (09:52):aaron: You said you think the current hardware is good, and the algorithms are the key. So what are
we waiting on? More trials with current hardware + algorithms or newer hardware?
annie keys says to (09:52):I've been running A1C of 6.2
gina says to (09:52):annie thats great!
Dr. Aaron Kowalski says to (09:53):Beanboy - we are workign on more trials but the key has been working with the companies
to show them that this is feasible
Dr. Aaron Kowalski says to (09:53):A main obstacle was the regulatory pathway
annie keys says to (09:53)::)
MelissaBL says to (09:53):we need more diabetics in the FDA...
diabeticizme says to (09:53):i am at 6.3 trying to get back to 5.7...
MelissaBL says to (09:53)::)
diabeticizme says to (09:53)::)
tmana says to (09:53):Of course. The FDA keeps good meds off the market and bad meds overpriced and on the market
Dr. Aaron Kowalski says to (09:54):We've worked closesly with FDA over the past two years and they have been working hard
with us to provide more clarity
Dr. Aaron Kowalski says to (09:54):I think we are very close!
gina says to (09:54):i just got my a1c down from 8.3 - 7.4
tmana says to (09:54):IMHO We need to get rid of the FDA
gina says to (09:54):lowest i have been in about 5-6 yrs
MelissaBL says to (09:54):good for you, G
beanboy says to (09:54):When you are 'working with the companies' are you using humalog, apidra, or both
dwendel says to (09:54):My last was a 6.1 and I am expecting a mid 5 in a couple of weeks!!
gina says to (09:54):awesome dwendel
Dr. Aaron Kowalski says to (09:54):FDA is important - like everyone here, we want to be sure the devices we use are
effective and safe - that is critical to me
dwendel says to (09:54):thnx
diabeticidol94 says to (09:55):i think i am ready for sensor. been pumping sice feb any suggestions. pros or cons
daddy says to (09:55):so aaron what is the ETA on a study of 'free roaming' patients using a closed or semi-closed loop
system?
sstrumello says to (09:55):I agree that the FDA has relied too much on "surrogate endpoints" rather than the entire picture
... I think they are finally seeing the error of their ways!
mdavis says to (09:55):how is the night time accuracy going to affect closed loop (the person is sleeping)? If false high
and insulin corrects then we're in trouble
annie keys says to (09:55):Apidra did absolutley nothing to control my daily BG. Works great for food--but did nothing for
me as a control insulin. I take the Apidra for food--when I can get it. Apidra cost nearly $300 per bottle with no
insurance.
dwendel says to (09:55):I will get there because I virtually cut out all bread, pasta, rice and potato. I cut down about
10-12 units of insulin a day.
Dr. Aaron Kowalski says to (09:55):But - it should be pointed out that people with diabetes aren't doing great now - many
lows - every day! And with an A1c of 7 you're spending on average about 9+ hours a day above 180
Dr. Aaron Kowalski says to (09:55):we can do much better!
diabeticizme says to (09:56):yes we can :)
gina says to (09:56):thanks for pointing that out aaron lol
gina says to (09:56):jk
MelissaBL says to (09:56):I just came up from low #6 today...somebody needs to fiddle with her basals...
Dr. Aaron Kowalski says to (09:56):mdavis - great question about overnight. Its interesting that in our studies we can peg a
bg every time
gina says to (09:56):the lows at the gym are what get me most
Dr. Aaron Kowalski says to (09:56):But - again we need to be sure that we dont ever cause a problem
gina says to (09:57):when i was on the cgm for a week i felt so much more confident
diabeticidol94 says to (09:57):well i am already5.4 how much more can i except
gina says to (09:57):because it would alarm and i could check my BS and see if i was plummeting
jon says (09:57):We only have a couple of minutes left. Did everybody get their questions answered?
mdavis says to (09:57):thanks Aaron
diabeticizme says to (09:57):good job dbidol
annie keys says to (09:57):I've learned a lot. Thanks.
dwendel says to (09:57):diabeticidol94 Very nice!!
Dr. Aaron Kowalski says to (09:57):Interesting - about the lower a1cs
sstrumello says to (09:57):I think increased glycemic stability is a key, and again, the FDA's reliance on reduced HbA1c
rather than the quality of the HbA1c is the reason
fletcher says to (09:57):thanks Aaron !!!
diabeticidol94 says to (09:57):aaron are you going to be at dri in nyc
MelissaBL says to (09:57):Thank you for all you do, Aaron. And thank your team at JDRF.
diabeticizme says to (09:57):I did and learned a heck of a lot, thanks gina
Dr. Aaron Kowalski says to (09:58): We have another part of our study that looks at folks starting at a1c below 7
gina says to (09:58):your welcome!
diabeticizme says to (09:58):Thank Aaron keep up the good work
gina says to (09:58):what about 7.4 lol
millyyates says to (09:58):Many thanks to you for doing what you do!!!!
sstrumello says to (09:58):Thanks for joining us this evening, Aaron ... as always, its been very informative!
Dr. Aaron Kowalski says to (09:58):I'll keep you posted
AndyRozman says to dwendel (09:58):thanks aaron... i learned quite a few things...
Dr. Aaron Kowalski says to (09:58):THANKS FOR ALL THAT ALL OF YOU DO!
diabeticidol94 says to (09:58):thanks aaron for all you do for jdrf
daddy says to (09:58):thx aaron - no ETA on free roaming patients?
gina says to (09:58):Aaron you need to sign the petition lol
gina says to (09:58):the cgm petition
Dr. Aaron Kowalski says to (09:58):Free roaming -
Dr. Aaron Kowalski says to (09:59):I hope next year
MelissaBL says to (09:59):sounds like free range
MelissaBL says to (09:59)::)
dwendel says to (09:59):only 3 ft
gina says to (09:59):
http://www.ipetitions.com/petition/CGMSdenial/
daddy says to (09:59):yeah, free roaming is just regular folks 'out in the wild'
daddy says to (09:59):thanks aaaron
mdavis says to (09:59):no hormones at least no insulin
diabeticidol94 says to (09:59):<:o)
Lori says to (09:59):Thanks for letting me sit in Gina. Take care! Check out our site in November:
www.DiabeticLivingOnline.com. Thanks everyone.
Dr. Aaron Kowalski says to (09:59):Mdavis - good one - I like that !
jon says (09:59):Thank you Aaron for taking the time to chat with us tonight!
gina says to (09:59):thanks aaron i hope next time you chat i will be covered for my CGM!
diabeticidol94 says to (10:00):me too
jon says (10:00):The transcript will be available to view tomorrow on the past transcripts page
Dr. Aaron Kowalski says to (10:00):Thanks Gina !!! Talk to you soon. I can stay on for a few more minutes if anyone has a
last question or two
mdavis says to (10:00):what other hypoglycemia research do you look at
mdavis says to (10:00):you said this at the top
sstrumello says to (10:00):Thanks Aaron, Gina, and Jon ... another great program!
jon says (10:00):Thanks everybody for coming, we had a great turnout!
gina says to (10:00):thanks scott
MelissaBL says to (10:00):I wanted to know if you had any suggestions for people making their appeals.
diabeticidol94 says to (10:01):Anyone attending dri in nyc in october
Dr. Aaron Kowalski says to (10:01):Melissa - i hate to say it, but persistence
annie keys says to (10:01):Does anybody know of any programs to assist with cost for pump supplies? Totally self pay is a
real bear.
Dr. Aaron Kowalski says to (10:01):Plus - the new evidence should help
dwendel says to (10:01):Thanks everyone I will see you on Tudiabetes as that is where I recognize most of you from!!
tmana says to (10:01):I'm close enough, but (1) have other plans for that day and (2) it seems to be one of those "only T1s
allowed" deals
Dr. Aaron Kowalski says to (10:02):I heard just today of an appeal that was accepted based upon the recent publication
tmana says to (10:02)::)
MelissaBL says to (10:02):that's great
diabeticidol94 says to (10:02):(Tp) take care dwendel
dwendel says to (10:02):thanks
diabeticizme says to (10:02):c-ya dwendel
lore says to (10:02):hi all i was late coming in here....i wil read the transcript later
tmana says to (10:02):do you think things will speed up if you and the manufacturers look at providing devices for clinical
diagnostic use rather than therapeutic use?
millyyates says to (10:02):Surely the study won't help children?
diabeticidol94 says to (10:03):why not
MelissaBL says to (10:03):I've used two diagnostic
tmana says to (10:03):Study is based on less percent time used by children, and less drop in A1c (possibly for that reason)
millyyates says to (10:04):It doesn't say it reduces A1c.
tmana says to (10:04):I'd like to see it added into things like these Sleep For Live places... along with continuous BP
measurement and continuous body temperature measurement
lore says to (10:04):is anyone in the nwest per chance?
Dr. Aaron Kowalski says to (10:04):The paper doesn't show an a1c drop in kids
Dr. Aaron Kowalski says to (10:05):BUT - we presented at the EASD meeting that the kids who used it saw similar a1c
reduction to adults!
Dr. Aaron Kowalski says to (10:05):We will publish this soon
tmana says to (10:05):Lots of new stuff came out of the EASD meeting :)
MelissaBL says to (10:05):easd?
tmana says to (10:05):European Association for the Study of Diabetes, IIRC
MelissaBL says to (10:06):thx
tmana says to (10:06):The abstracts are available online, no cost
tmana says to (10:06):
http://www.easd.org/
millyyates says to (10:06):Aaron
millyyates says to (10:07):Aaron how do you adjust your rates and settings or do you now rely on CGMS to do continual
corrections?
diabeticizme says to (10:07):i have to go thanks again
diabeticidol94 says to (10:08):niters8-)
sixuntilme says to (10:08):Thanks for all of the information!
Dr. Aaron Kowalski says to (10:08):Milly - I have to say (and I can't recommend this - I'm a scientist not a physician) that
I do most of my dosing etc... with my cgm numbers
Dr. Aaron Kowalski says to (10:08):Any my a1c is bettter with fewer lows
diabeticidol94 says to (10:09):how long you been diabetic?
Dr. Aaron Kowalski says to (10:09):Coming up on 24 years
millyyates says to (10:09):That's what I have found when using cgms
diabeticidol94 says to (10:10):wow! AMAZING ! me since 94 brother since early 70s
lore says to (10:10):sigh its been just under a year for me
diabeticidol94 says to (10:11):whats your aic aaron and do you have any complications?
Dr. Aaron Kowalski says to (10:11):My brother was diagnosed at age 3 in 1977 - I was 13 in 1984.
Dr. Aaron Kowalski says to (10:12):A1c in the mid 6's and knock on wood no complicaitons - literally just at the eye doc
today and was pleased to get a clean report
gina says to (10:12):awesome
tmana says to (10:12)::)
diabeticidol94 says to (10:12):i was 25 blood sugar 1064 brother was 24 months slipped into coma.
gina says to (10:12):i just had my check up a coupleof weeks ago
tmana says to (10:12):sheesh, d-idol
diabeticidol94 says to (10:13):great job aaron
millyyates says to (10:13):That is so fantastic. Over the years what has been your highest A1c and for what oeriod?
diabeticidol94 says to (10:13):my brother is truely my hero and insperation for me! now pumping
Dr. Aaron Kowalski says to (10:14):Sounds strange but I feel lucky that I was born at a time where we had more options than
those foks with t1 in the past
tmana says to (10:14):I certainly understand, Aaron.
gina says to (10:14):i feel the same
Dr. Aaron Kowalski says to (10:14):And that I survived college with diabetes! I certainly didn't always have a great a1c -
particularly back then
landileigh says to (10:15):i just got my pump!
lore says to (10:15):lat year has been the year from hell..but life is getting better..now that i seem to be stable
diabeticidol94 says to (10:15):yes! this is truely a blessing i feel same ay. we come along way since ringing out old urine
diapers
Dr. Aaron Kowalski says to (10:15):The research that we're funding at JDRF gives me much hope for the future!
tmana says to (10:15):I remember my great-grandmother having shots (I think geriatric T2), and my grandmother (other side of
family) having a very strict diet
Dr. Aaron Kowalski says to (10:15):We're not there yet, but the future is bright!
diabeticidol94 says to (10:15):YEAH! FOR JDRF ALL THE WAY
tmana says to (10:15):I wish sometimes that we could get the OCD-like attention to our care across to our parents and
grandparents
tmana says to (10:16):for their care
diabeticidol94 says to (10:16):There are many challenges to face . And a few bumps along the way but we will get to our
goal. And that will truely be a dream come true
landileigh says to (10:17):I only wish it was for me. I'm an other, whose only cure will be a Double.
Dr. Aaron Kowalski says to (10:17):Thanks again GIna - it's time for me to log off everyone. Thanks for all of your passion
- we're going to get there. I look forward to coming on again soon.
Dr. Aaron Kowalski says to (10:17):Good night everyone!