For all of us living with type 1 diabetes, who know how hard we work to stay well and how unseen we are, here's a tribute to all of us and a light shining down upon us.
JDRF placed a shocking ad in the NY Times and Washington Post pushing for faster approval from the FDA on devices to keep us safe from dangerous lows. Devices that already exist and are used in Europe, but stall here waiting for FDA approval.
Hi Riva: Awesome post in HuffPost. You said it so well. I too have nights when I go to bed and I think to myself, "I hope I wake up." Less of a problem since I got my pump 13 years ago, and even less of a problem now with my Dexcom, but there are still times I think that. Thanks for writing this piece.
Wow! I had no idea the numbers were anything like 1 in 20. It astounds me that if there are 1 million people w/ diabetes, there are 50,000 deaths/ year from "dead in bed" and it doesn't make more of a splash in the media? Or is that made up? I will have to reconsider my general "meh" about the "artificial pancreas" project.
This is why I/my husband check our 5 yr old at 8pm, 10pm, sometimes 12am, 2am, sometimes 4am, and 6am. I can't sleep unless I check because the thought of her not waking up...........
I would urge you to actually read the literature on this matter. This advertisement is a serious distortion rely8ing on a single paper which probably should never have gotten past the editors. The paper by Philip Cryer as I believe an editorial in Diabetes Care, it was probably not reviewed and is full of errors. For instance, Cryer claims that 6% of patients in the DCCT/EDIC study (15) died of hypos, but only 3 of the 1400 patients died (0.2%) hardly 6%. He cites a Norway study (16) and claims 10% of patients died, but my reading of the paper suggests 10 out of more than 2000 died of hypos, a paltry 0.5%.
I am not saying that hypos are not serious or that the loss of a child is not tragic. I just ask for truth and honesty. And this is not truth, this is distortion. Shame on Diabetes Care, shame on Cryer and shame on the JDRF for resorting to a stunt. .
I was wondering about the numbers as well, bsc. I wonder though, perhaps 3 died during the study, but another 12 have passed since then? Is he counting just during study or adjusted for life expectancy based on results from the study? I have not read the entire DCCT or related studies, and have only briefly glanced at the article in question here. More research for me i guess. While shock ads are questionable for creative statistics calculations, I am guessing JDRF would not stay too far from the truth on this matter, it is my hope at least.
What I find disturbing about the shock tactics is that they are harmful. This is the type of stuff that causes insulin to NOT be prescribed. As you are well aware, I was unable to get a prescription for insulin due to claims that I would kill myself with hypos. So many diabetics are likely to be harmed by this distortion. They will have to go for years with elevated blood sugars before their doctors will dare to prescribe insulin. And unfortunately the vast majority of diabetics (both T1 and T2) die not from hypos, but from complications that a direct result of high blood sugars.
Some will call these scare tactics, and I am not in favor of scare tactics, but others will say this is reality and information to try and get us the same equipment to prevent lows that others in the world are already using. If you have type 1 diabetes you have to use insulin. Period. You are in effect using a dangerous drug but there is no alternative. You learn to always be vigilant and on guard and that’s the best you can do. I think it’s high time the general public understood the reality of type 1 diabetes, and the FDA regarded our predicament with greater urgency.
Still the statistics seem a bit "fudged" to me. Looking through the comments, there's a lady from Australia who says "we lost another one last week" which would be 52 deaths/ year out of 22 million (wikipedia...) population, not PWD. If the US had that many deaths, it would be 6.44x 52 or 344 deaths from dead in bed/ year. I suspect that the articles are skewing deaths from diabetes into deaths from dead in bed for marketing purposes? I suspect that the vast majority of diabetes deaths are more the "fade away" kind rather than the "burn out" kind. I see stories but I don't see 50,000 deaths/ year from dead in bed in the US. However oblivious the media is, they would notice that scale of death. I think that it would be more important to accurately depict the wasteland created by diabetes than to "market" a shockingly inaccurate statistic. Whether it's 10 deaths or 1000 deaths or 50,000 deaths, it's horrible but 50,000 deaths is more horrible but to say 50,000 when it's not accurate doesn't seem like a good thing to me.
