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JDRF Ad - Hypoglycemia

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

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  1. thebestnest5

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    Many of us check BGs through the night. What if we took the advice of many of our endos and did not check overnight?
     
  2. hawkeyegirl

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    Seriously? You think that most people on here knew this? Have you READ some of these threads lately? I know YOU can do math. But my post wasn't directed toward you. ;)

    Yeah, I'm irritated. I simply don't get it when someone says that they don't care if the risk of something is 5% or 0.005%. And don't apparently care if the organization that purports to represent them tells the truth or not. I just don't get it.
     
  3. hawkeyegirl

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    Really, then I don't have any more to say. If you can read some of the posts on this thread and tell me that they were ALL logical...well...kudos to you for your ability to see the good in everything.
     
  4. Lisa P.

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    I thought I had read every post on this and the other thread.

    I saw a number of people who thought the stat was wildly wrong, I saw some who said they thought it could be about right, then I saw several that disturbed me greatly where people said they had NO IDEA the number was so high and they were glad they'd been informed.

    But I've seen no analysis of actual studies that in any way verified 5%. The only number crunching I've seen on either thread has shown it to be very badly overstated.

    Did I miss something?
     
  5. badshoe

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    There is not a study that says exactly 5%. You may have missed a number of studies that dance around and above 5%. Also the trend over time in the studies is an increasing estimated figure, than may be an increasing 5%, better studies both or neither. Like everything with diabetes the figures in the studies vary as do what people see in them.

    You can have a look for your self:

    The data for the ad is the based on various articles by Philip E. Cryer, MD. Significant in that is a piece in the American Journal of Medicine, Death during Intensive Glycemic Therapy of Diabetes: Mechanisms and Implications. http://www.amjmed.com/article/S0002-9343(11)00687-5/fulltext
    That article in turn references:

    The 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;356:1842?1852 http://www.amjmed.com/article/S0002-9343(11)00687-5/fulltext#

    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. Diabetes Care. 2008;31:922?926 - http://www.amjmed.com/article/S0002-9343(11)00687-5/fulltext#

    Skrivarhaug T, Bangstad H-J, Stene LC, Sandvik L, Hanssen KF, Joner G. Long-term mortality in a nationwide cohort of childhood-onset type 1 diabetic patients in Norway. Diabetologia. 2006;49:298?305 - http://www.amjmed.com/article/S0002-9343(11)00687-5/fulltext#
     
  6. MHoskins2179

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    I wanted to make something clear, too.

    I am anything but a numbers guy or math-y person, and don't claim to be - please don't take my previously-posted numbers-analysis as gospel. I've been told that my interpretation is incorrect by someone who deals with stats/research issues regularly, and I have no reason to doubt that person.

    Personally, I don't agree there's anything in what the JDRF that justifies the number. But that doesn't mean I'm seeing it correctly, or that something else doesn't justify that 1:20 figure. That's also not to say that the overall number is incredibly under-reported as others have said, and that 1:20 could even be too low (no pun intended, there).

    That's just my own thought on what's been cited as the

    There's nothing really more to say... though I really found some insight from not only this CWD thread, but also some D-Parent blogs online: Hallie's The Princess and the Pump, and Bennet Dunlap's Your Diabetes May Vary. I won't post links as that's frowned upon (or so I've heard), but personally I found value in hearing those perspectives.

    Also, this is an email I wrote to some D-friends recently on this topic, and I thought it might be appropriate here (just food for thought, of course):

    As much as I may doubt the 1:20 ratio being backed up by the cited-studies and statistics, I don't doubt for a moment it's conservative or wrong based on all the other data and shared-information out there.

    On a certain level, though: it's an interesting discussion that brings up a level of self-reflection - if the 1:20 isn't accurate, whether too high or low (no D-pun intended), then how do we feel about the JDRF using that information to make a point? Does the end justify the means? I think it's a slippery slope, to some degree...

    It seems to me that stats are very similar to Bible passages, in that one can basically find and use a particular passage or stat to justify a certain point. And then you can find another study or stat that proves just the opposite. Even if both are out of context or completely open to interpretation by reasonable people.

    Like many have said, I am trying to focus on the single person who has or could die because we haven't done what's necessary to prevent that death.

    I'm certainly glad we can have a discussion with so many viewpoints, and as someone else mentioned: that we have the freedom to do that and choose who or what to support.
     
  7. Mom2Kathy

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    Yes. Which is why my biggest fear, in the diabetes world, is death from a low.

    My daughter had a hypoglycemic seizure when we were only 2 months into diagnosis. She's not had one since, but I still fear that "one miscalculation" and that I might not be there if she has another one, or worse. I am diligent and cautious, but I'm also human and can make mistakes. I don't live in fear of it, but I do worry about it.

    If the chance she can die from a low is "5% or .0005%," it's still a chance, no matter how slim. It really hit home for me when a member of this community experienced it firsthand.

    JMHO.
     
  8. sooz

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    Look, I tried to bow out gracefully but I have had enough of your insults. I do the math every day when I figure the carbs and doses for my granddaughter's insulin just like everyone else here. Just because YOU can't or wont understand what my point is does not make ME less capable than you. If it troubles you that I don't lie awake thinking, oh, the chance of having an earthquake tonight and me dying in it is .5% and , oh no!, the true statistic is 1%, DOUBLE the one I was worrying about, or worrying that my granddaughter has a 1,2,3, or 5% chance of dying tonight, instead of just worrying that she might not get up in the morning is insulting to you then too bad. If I am the one who dies in the earthquake, I am 100% dead. If you dwell on the statistics, I feel sorry for you. If you tell me that you know all the TRUE, ACCURATE statistics of things that may harm you and your child and you go out into the world anyway, then bravo, you are superwoman. Statistics have their place but you can set up a study to produce any statistics you want. There are many factors that can skew a statistical study.

    You say you don't get it, and yet in the same breath you set yourself up as intellectually superior to other people who have a different slant than you on things. Which is it, you don't get it, or your opinion is the only one that counts here? If you can't even understand that good people can disagree on issues and each have a valid perspective perhaps it is just that you have a lot of growing up to do. You obviously see the world in black and white, yes or no, true or false. Others may see shades of gray, a spectrum of colors, and are able to weigh the truth BEHIND the statistic. We need both kinds of people in the world.

    Go ahead and think yourself intellectually superior to me, I feel sorry for you. You have no idea what you are missing by discounting me.
     
  9. emm142

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    Okay. Here's what I don't understand. I worry more about getting into a fatal car accident than I do about being hit by a meteor. Both of these scenarios would leave me 100% dead. The reason I worry about the former more than the latter is because, statistically, it happens to more people. Even if you don't know the precise statistics, I think that pretty much everyone worries more about likely events than unlikely ones, right?

    To be honest, if you think it doesn't matter what the statistics are then there isn't much reason to push for the AP at all. I bet that 0.0001% or some other tiny percentage of people will still die from lows once the AP is released. The whole point in improving treatments is to lower the risk.. so how can you justify that if the risk doesn't matter?
     
  10. swellman

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    Did you read the articles from the "other" thread?

    "Three early reports indicated that 2-4% of people with diabetes die from hypoglycemia (1). More recent reports indicated that 6% (14), 7% (15), and 10% (16) of deaths of people with type 1 diabetes were the result of hypoglycemia."

    Reference #16 puts hypoglycemia at 10% over the course of a 30 year study. There was another classification at 31% called "Sudden and unexpected death" as defined by "no potentially fatal or critical event or disease present at least 24 h before death. Includes dead-in-bed (patient found dead in an undisturbed bed; observed to be in good health condition the day before; autopsy not informative)." which could easily, in my opinion, include other hypoglycemic related deaths. It could easily be larger than 10% based on this.

    I feel entirely comfortable with the 5% estimation given this one article even though it's half (or 50% lower) than what is stated in the article. I don't need any other number crunching as the article appears to be completely valid and I have no issue with their JFRF's choice to use 5%. For what it's worth I do not think it matters if a study includes insulin dependent T2s not that this paper did.

    Long-term mortality in a nationwide cohort of childhood-onset type 1 diabetic patients in Norway

    Someone please correct me if I misinterpreted the paper.
     
    Last edited: Nov 8, 2011
  11. sooz

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    So, to follow your logic, why fund any disease research? The statistic of the general population getting it is smaller than the percentage of the people who do get it. If 1 in 7 will get cancer then that means 6 will not get it, so how can anyone justify spending money on it? I believe that there are very many deadly/vicious diseases that the statistical probability of anyone getting it is very low and they have tremendous difficulty raising funds for their cause. Does that make it right? To base decisions like that on statistics?
     
  12. emm142

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    Okay, I said that statistics matter, but I never said that we should only fund research which would benefit the majority.. Could you point out what I said that would make you think that, because I don't really see how what you're suggesting I could say follows on from what I actually said.
     
  13. MHoskins2179

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    Thanks for that response, Emma. In my opinion, the importance of the risk or likelihood is relative based on the situation you're talking about. In this case, as it applies to how many people die in some way as a result of a Low, we're talking about data that simply isn't adequately and fully tracked. The stats can be subjective, but in the end we're talking about something that is likely a very real possibility for those living with Type 1 diabetes (i.e. having a Low that results in death). It's a fear that probably 99.9% of those LIVING with Type 1 have, to some degree, and that can be proven do often happen to those who've seemingly "done everything right." So is the uncertainty of Type 1, for most.

    No one is saying this is a crippling fear on the mind every moment of every day, but it's one that for many surfaces regularly.

    The context of what's behind the stat is, TO ME, what I find the most important to press me forward on this issue and shape my opinions about the ad. Not the "this study proves or doesn't prove."

    Yes, there's some level of skepticism about the statistical use here and everywhere, but I don't believe it's a blatant lie or attempt to mislead by the JDRF or any organization that does this routinely - it's being used to illustrate the point to the uninformed eye that this condition is serious, that it can be deadly, and it often is deadly. And that we need to do something about that, just as other countries have already done. My take, again.

    Somehow, I feel like we're all spinning wheels here because what's needed to have been written has... but still, I continue posting...

    In the end: I wish I was a mouse, because at least then a cure would be on the horizon and I'd be on the front lines of getting the latest gadget that could help me live my life of cheese-hunting and maze-navigating.
     
  14. hawkeyegirl

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    Truly, how am I supposed to know your math skills? You told me that when it comes to the odds of your child dying from something, you don't care if the odds are 5% or 0.005%. That if someone told you that the odds were 1 in 20 or 1 in 20,000 that they would die from something, that difference is irrelevant to you. That either tells me that you don't understand the difference between the two or that you worry about all risks, no matter how large or how small equally. Either way, there's a breakdown somewhere. And you appear to discount ALL statistics by saying that you can set up a study to produce any statistics that you want. It's not quite that easy, and again, this makes me doubt your understanding of peer-reviewed studies and statistics.

    I'm not even going to address the attacks above. But I will say that you're a hypocrite when you tell me that I've insulted you. You've made numerous assumptions, mischaracterizations and attacks on me above, none of which are true. What I have learned is to not argue with people who base their arguments purely on emotion.
     
    Last edited: Nov 8, 2011
  15. sooz

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    I am really disheartened that there seems to be a need to pick apart my posts, however, I will try to answer your question.

    You stated "To be honest, if you think it doesn't matter what the statistics are then there isn't much reason to push for the AP at all. I bet that 0.0001% or some other tiny percentage of people will still die from lows once the AP is released."

    That statement is the one that I was referring to. I wasn't saying that YOU think we should only fund research which would benefit the majority. You said that there still might be some small risk of dying even with the AP so why bother pushing for the research? I am sorry if I misunderstood your point.
     
  16. badshoe

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    Thanks Mike for the blog referral and more importantly the effort to put the conversation into a productive, what do we do next framework.

    I am not wildly comfortable with the 1:20 statistic, mostly because it implies an accuracy that I doubt, it is an estimate. But here is a thought what if it is 1:20 +/- 20% are we more comfortable with that?

    It seem to me that those of us who live with diabetes have a better than average appreciation of +/-. Our meters are +/- 20% but we tend to act like they are more accurate than that. How about carb counting what is the margin of error on the total carbs in dinner, I bet it is fairly wide too.

    What I wish happened is that this ad came out a few months ago and all this energy went into comments to the FDA LGS open docket. Maybe like Mike suggest we look to how our energy can be spent making life better.

    If you have not read the proposed guidelines for LGS it it telling about FDA thinking. One criteria was that LGS not have a negative impact on A1C. The definition of that impact was less than what we typically see in quarter to quarter variations. I don't see LGS or AP as perfect but stopping basal insulin in a low kid at night is a real sound idea and A1C is a crazy criteria for approving it.

    What do we do next? Read the FDA dockets as they open and comment on them. I know Mike does. Looking froward is one of the thinks I like about him.
     
  17. hawkeyegirl

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    Well, I think the answer to all of this is that humans don't behave in logical ways. I mean, the risk of stranger abduction is extraordinarily low. Like winning the lottery odds. Yet many folks go to great extremes to hover over kids old enough to play in the neighborhood alone as if there were predators lurking around every corner.

    These same folks are likely some what careless with their carseat installation and are yacking on their cellphones when they should be paying attention to the road, both of which are far more likely to kill their kid than Peter Pervert.
     
  18. sooz

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    The fact that you doubt my intelligence means nothing to me. I do not care what you understand about me and what you don't understand about me. The fact that, were you to go in to wake your child one morning, and you find they had died from a low in the night, and you are asserting that you would care about what the statistic is, makes me pity you. Feel free to bully me all you want, I can take it. People who think they are superior intellectually to others, like you do, miss out on so much in this world.
     
  19. hawkeyegirl

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    Where exactly did I say that?
     
  20. emm142

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    I'm sorry that I disheartened you. I guess I'm knee deep in my philosophy degree, and I'm used to being in circumstances where we're supposed to pick apart each other's arguments and don't get too emotionally involved. Guess that doesn't translate to this board, huh? ;)

    My point wasn't meant to be that we actually shouldn't fund research for the AP (on the contrary, I think that we totally should). I was saying that with your initial point of view (that statistics don't matter), how can you justify funding the AP? With my point of view (that statistics do matter), I can already justify funding the AP.
     
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