- advertisement -

JDRF Ad - Hypoglycemia

Discussion in 'Parents of Children with Type 1' started by Aaron Kowalski, Nov 2, 2011.

Thread Status:
Not open for further replies.
  1. MHoskins2179

    MHoskins2179 Approved members

    Joined:
    Mar 14, 2010
    Messages:
    494
    I've gone through some of the footnote studies listed by the JDRF as justification for the 5% figure (or 1:20 ratio) behind the ad. This is what I found. It's unfortunately not complete with every footnote/study flushed out, because I don't have access to some of the full text without purchasing it. The Cryer studies appear to be citing his own articles and studies, or some of these others below as the more recent ones showing higher % of hypo-caused deaths.

    [6] Laing SP, Swerdlow AJ, Slater SD, et al. The British Diabetic Association Cohort Study, I: all-cause mortality in patients with insulintreated diabetes mellitus. Diabet Med. 1999;16:459-465.

    - My review: 949 people with Type 1 died out of 23,752 (4%), with many being attributed to acute metabolic complications such as Lows or DKA.

    [7] Diabetes Control and Complications Trial/Epidemiology of Diabetes Interventions and Complications Study Research Group. Long-term effect of diabetes and its treatment on cognitive function. N Engl J Med 2007;356(18):1842?52.

    - My review: Of the 53 deaths during the DCCT and the EDIC study, 3 were attributed to hypoglycemia and all 3 occurred during the EDIC study. ? (5.6%)

    [8] Feltbower RG, Bodansky HJ, Patterson CC, et al. Acute complications and drug misuse are important causes of death for children and young adults with type 1 diabetes: results from the Yorkshire Register of diabetes in children and young adults. Diabetes Care 2008;31(5):922?6.

    My review: 4,246 individuals were followed and overall, 108 patients died overall (2.5%). However, 47 of 108 deaths (4%) occurred from diabetes complications, 32 of which were acute and 15 chronic.... So, by extension, something like 1.1% may have died from a Low.

    [9] Skrivarhaug T, Bangstad HJ, Stene LC, et al. Long-term mortality in a nationwide cohort of childhood-onset type 1 diabetic patients in Norway. Diabetologia 2006;49(2):298?305.

    My review: 103 of 1,906 died (5.4%), with acute metabolic complications such as Lows or DKA accounting for the most deaths at 32% of the total. So, by extension: 1.7% could have been result of Lows.

    Additionally, one I found from September 2011 study - Time trends in mortality in patients with type 1 diabetes: nationwide population based cohort study

    My review: 1338 deaths occurred out of 17,306 people (7.7%), with data showing mortality rate decreasing over time for those diagnosed before they were 14. I couldn't conclude what this said about Lows as a cause, as most of it goes over my head... but link is here: http://www.bmj.com/content/343/bmj.d5364.full

    Also, saw a EuroDiab study from June 2007 that said 141 deaths out of 28,887 people with Type 1 were recorded (4.8%). However, only 35% of those deaths were directly related to D and many mentioned DKA specifically. Five were specifically caused by Lows. So, there, you're basically looking at less than 1% actually being proven to be a result of a Low.
     
    Last edited: Nov 5, 2011
  2. OSUMom

    OSUMom Approved members

    Joined:
    Sep 10, 2006
    Messages:
    5,324
    Well said. When I thought I was walking for a cure, I had no idea I was walking for research for an AP also. I realize and respect that this is a mission for many people but it's not for me.

    Ellen I appreciate your meter comment/concern also.
     
  3. Barbzzz

    Barbzzz Approved members

    Joined:
    Jul 5, 2008
    Messages:
    2,661
    Oh, God, me too. :cwds:
     
  4. Beach bum

    Beach bum Approved members

    Joined:
    Nov 17, 2005
    Messages:
    11,315
    Do you know, when I saw this I wanted to hear your feelings about this ad?
    Well said.

    You know, I appreciate that JDRF wants to help people manage their diabetes with great technology, but they really need to change their tag line. Are we walking for a cure, or are we walking for an AP?
     
  5. Flutterby

    Flutterby Approved members

    Joined:
    Nov 11, 2006
    Messages:
    14,623
    This whole time I NEVER even thought about this. How the teens/adults would feel about this ad. We don't get any of the papers that this ad was run in, although I did get an email directly from JDRF with a link to the ad. I'm thankful my child hasn't seen it.

    As to the last part of your post. When we first did the walk for a cure, my daughter, 3 at the time, wanted to know what the cure looked like so she could look for it while we walked. Try explaining THAT to a 3 year old. I'm pretty sure my explaination didn't involve her pump still being attached to her. We walked and raised THOUSANDS of dollars for research for A CURE. Now, I realize the AP will be an amazing thing for those that want to use it, once it gets here, but Its NOT a cure.
     
  6. Lisa P.

    Lisa P. Approved members

    Joined:
    May 19, 2008
    Messages:
    5,380
    Thank you for the time you put into this.
     
  7. Beach bum

    Beach bum Approved members

    Joined:
    Nov 17, 2005
    Messages:
    11,315
    Thank you for weeding through this.
     
  8. selketine

    selketine Approved members

    Joined:
    Jan 4, 2006
    Messages:
    6,057
    Yeah - definitely thanks for that. I go to look at those journals and they are so hard to weed through. This 1:20 statistic is the thing that raised question for me about the ad - not so much that the JDRF was promoting work on the AP.

    I'm guessing the money for type 1 research is spread around on everything from better technology to deal with it to research for cures. I personally want a good chunk to go to finding better ways of handling the disease NOW (better insulins, meters, cgms, etc.).

    I have never felt like a cure would come in William's lifetime. I don't spend a second of my day wishing for that or thinking it will happen. Once there is the stuff there so he can live his life out with safety, longevity, and minimal discomfort then I'll be looking for that cure.

    I absolutely believe that things will be invented in the short term to make all of this easier - and his life better - that is the stuff I really want - first.
     
  9. MamaC

    MamaC Approved members

    Joined:
    Dec 9, 2006
    Messages:
    5,292
    To be clear, neither do I. Hadn't thought about it at all till the AP came up the other day.

    In our particular situation, at least as it stands now, the only thing that would make the day-to-day easier for my kid is a cure...which I want, but don't expect.
     
  10. thebestnest5

    thebestnest5 Approved members

    Joined:
    Aug 16, 2006
    Messages:
    3,001
    Thank you, I have been remaining quiet on these threads. I do believe that hypo deaths are probably under-reported and not fully understood. It makes me think of last night at 1:30am when DH is stomping back to bed, muttering.."$#%@ 35:mad:! And how the hell are we not supposed to test at night!" Yes, Dexcom was reading---WE JUST DIDN'T HEAR IT!! DEXCOM AND MEDTRONIC CAN YOU HEAR ME?? LOUDER ALARMS, PARENT MONITOR---NOW!!! Since, I'm shouting maybe they will.:eek::(:rolleyes:
     
  11. selketine

    selketine Approved members

    Joined:
    Jan 4, 2006
    Messages:
    6,057
    Not directed at you.:cwds:

    The word "cure" doesn't do much for me but when I hear "less invasive" or "more accurate" then my ears really perk up!

    If we could get a cgms that was more like a sticker (no needles) - that was accurate, cheap and easy - and would transmit earth shattering alarms and call 911 if you wanted it to - yeah - that would make me happy.:)

    Smart insulin? yeah - that too.

    A veo pump that turns itself off for a low - nice but right now the sensors are "meh" - the market for that is small.
     
  12. emm142

    emm142 Approved members

    Joined:
    Sep 7, 2008
    Messages:
    6,883
    I still don't think that our current insulin and delivery methods are compatible with an AP system. For me, that seems like a bigger issue than the accuracy of the CGM (I get pretty darn good accuracy for the vast majority of the time during the first 7 days of each sensor.)
     
  13. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    Here is a thought:

    How about getting rid of the disparity in "diabetes" care of both T1's and T2's.

    Getting everyone to be testing with better metters more often and carb counting and thier meals! How many children to adults health coud we see dramatically improve IF they were given the education and resources that we at "CWD" where given or sought out.

    Surely making a "standard in care" in regards to diabetes management would drasticaly change the statistics whatever they be.

    Just my 2cents.
     
  14. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    I tend to agree. And in all honestly better insulins would be the biggest benefit to all, it would benefit not only pumpers but anyone needing insulin no matter the DX.
     
  15. Kaleb & Zech's Mom

    Kaleb & Zech's Mom New Member

    Joined:
    Nov 4, 2011
    Messages:
    1
    Jakes Mom

    I was shocked that 1 in 20 people die of low blood sugars!! I have two boys w/type 1. Oldest is 29 and other son is 17 and still at home. My biggest worry has always been low blood sugars. I have had to use the Glucogon shot on several occasions. Once your child is diagnosed, your sleep pattern surely changes. Thank goodness my older son has a very watchful girlfriend. My youngest wants to move out when he's 18 (one year) and I'm scared to death. We just need to deal with it and pray (at least that's what I do).
    Good luck. You're not alone.:cwds:
     
  16. hawkeyegirl

    hawkeyegirl Approved members

    Joined:
    Nov 15, 2007
    Messages:
    13,157
    Have you read the whole thread? I don't think there has been any definitive evidence posted that the statistic is correct.
     
  17. carden

    carden New Member

    Joined:
    Nov 4, 2011
    Messages:
    4
    Yes, I've yet to see an explanation as to how the FDA is blocking the AP. From what I've seen the FDA is highly involved in pushing the approval process along as fast as it can. Explain to us why the VEO is approved in Europe and not here? Could it possibly have to do with differing statutory and regulatory requirements on such devices? And if so, would that not be an issue for Congress, not a government agency? And I was at the Children's Congress this year and listened to the testimony given by NIH and the FDA and it seems to me they are working extremely hard and making accomodations they normally do not make in order to accelerate this process while maintaining U.S. law imposed safety and efficiency requirements. In fact, the FDA official stated he, himself, was a Type I diabetic. So please give some specifics of how you think the FDA is delaying this. Or how, you think the FDA is not 110% clear on how important this AP is. Also, has a company actually submitted a VEO like device for approval? And has it been denied? Why was it denied? What can JDRF do to improve the chances that such a device will be approved -- other than running ads and making general statements that it's the FDA's fault? As a wife of a Type I and the sister of a Type 1, I'd like some more specific answers and not the PR spin.
     
  18. hawkeyegirl

    hawkeyegirl Approved members

    Joined:
    Nov 15, 2007
    Messages:
    13,157
    It took 22 months for the FDA to approve the Revel pump from the time of submission to approval. Anyone who has used the x22 series and the Revel would find this ludicrous. Really, the differences are so minor so as to mostly be a big old yawner. I think that the FDA is made up of government workers who probably punch an 8-5 time clock, and have no real incentive to scoot these products through the process. I mean, if anyone has any experience with a government agency that is speedy and efficient about its work, feel free to enlighten me, but that's how I see it. And maybe they're just flat-out swamped with submissions. Who knows? But I know that they're probably not staying late to get them done. The work will be there tomorrow. And the next day. And the next.

    So then you submit the Veo which the FDA sees as a HUGE step forward as far as automating the insulin-delivery process, and they're having big old bureaucratic kittens about it. I mean you should READ the guidelines they've proposed for evaluating the Veo. You'd think the thing automatically dosed insulin, dosed glucagon, provided an electrical shock if you had a heart attack, and delivered chemo if it detected cancer cells. They've got tons of studies in front of them showing that the Veo is safe, they've got thousands of people in Europe and other continents using it with no reported ill-effects, but the current climate at the FDA is extraordinarily conservative, and so we wait.
     
  19. carden

    carden New Member

    Joined:
    Nov 4, 2011
    Messages:
    4
    Actually I can tell you with 100% certainty that they do not punch 8-5 time clocks, nor do they come home on time for dinner. Actually they work late nights, they work weekends, and they do care. I know this from personal experience. Secondly, has the VEO been submitted to the FDA for approval? Do you know that for a fact? And I have read the guidelines. But do you honestly think that they are setting up road blocks just for the hell of it or because they are trying to adhere to the law as it is written? Do you honestly think they don't care? If you do, I am sorry. Because within that agency are people, some of whom really do care about the job that they do. I have people with diabetes in my life and I have people who work at the FDA in my life, so perhaps I can see both sides. I'd just like JDRF to be more specific than simply saying the FDA is throwing up roadblocks that necessitate a full on PR war with hard earned JDRF money.
     
  20. Flutterby

    Flutterby Approved members

    Joined:
    Nov 11, 2006
    Messages:
    14,623

    In a meating with a senator, it was said that the FDA is seaking 100% accuracy for approval.

    That 'hard earned' JDRF money is coming from parents, parents who are 'walking' for a cure, that Galas and generally good folks who are hoping to make a difference in the lives of those with type 1 diabetes.

    By the way, welcome to the board, its always nice to see new people jump in on hot topics.:cwds:
     
Thread Status:
Not open for further replies.

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice