We probably don’t need to tell you that the Diabetes Online Community is all abuzz over the full-page ad that JDRF ran in The New York Times and in The Washington Post last week. It’s quite the shock campaign… and most of the buzz has been about that 1 in 20 statistic. Can it possibly be accurate that so many people with diabetes die of low blood sugar?!
JDRF stands behind the statistic, citing multiple studies, while some observers balk that “this ‘fact’ appears to be based almost entirely on one author’s (Dr. Cryer’s) interpretation of a variety of studies done by others.”
We agree with Mike Hoskins and many others that it’s not about the exact number. Every person who dies of low blood sugar is one too many.
We also agree with Laura Houston and many others about the need to be bold.
Kudos to JDRF for doing that, at least. They’ve certainly gotten the attention of people who care about diabetes! And hopefully also from others who didn’t know they needed to care until they saw this eye-catching campaign…
On the other hand, I find it somewhat upsetting to see parents of kids with diabetes commenting that an ad like this “scares the living crap out of me.” I’m sure that’s not exactly what JDRF had in mind. In fact, CEO Jeffrey Brewer and Artificial Pancreas project director Aaron Kowalski (both with very personal connections to type 1 diabetes) insist that the ad was aimed at lobbying the FDA for faster approval of life-saving technologies like the CGM system with low-glucose suspend capabilities.
Here’s where we have to side with the critics, though, I’m afraid: is an ad really going to motivate the FDA? An agency embroiled in its own politics and problems? And also one that shouldn’t be swayed by advertising, generally speaking?
I guess what I’m saying is that we have mixed feelings over here. On the one hand, we love that JDRF “went for it,” with a message that clearly shouts, “We Need Help!!”
On the other hand, we do wonder if spending huge amounts of money on a one-time shock campaign has any lasting effect.
I can’t help thinking that for lasting effect, we still need unity in this community, and yes… a rah-rah positive side to our advocacy efforts that we can use to attract “outsiders” to think and care about this cause for longer than the few moments it takes to wince at a scary statistic.
Clearly, D-blogger critic Jenny Ruhl speaks some folks’ minds when she comments, “People feel good for wearing bracelets, lighting candles, buying products, marching with signs, etc, but this accomplishes nothing (except in some cases to raise sales of the products with ribbons supplied by cynical corporations whose actual contributions to the cause turn out to be tiny). None of these awareness campaigns result in real information being given to the public about the condition. People with the condition are only spotlighted if they are courageous, upbeat, and, of course, alive. Real diabetes awareness would involve educating people with diabetes about the best ways to treat their condition.”
Other people are out there shouting “it’s time for a cure!” Of course it is.
But how do you expect to get there — either to the cure or to “real diabetes awareness” — without ongoing (and yes – upbeat and rah-rah-let’s-wear-Blue Circles) activism? That’s what sticks in people’s minds, and on their lapels, what gets them to donate those extra dollars at the supermarket, and to perk up when they hear the world “diabetes,” because THEY feel involved.
So let’s do the shock campaigns now and then. Absolutely.
But inbetween, as advocate Aliza points out, let’s keep the momentum going with “the wear blue, postcard, and World Diabetes Day things (that) bring attention and unity to Diabetes. Yes, we need the low glucose suspend and APP, but we also need people to recognize that we as a community need these things, and what we go through on a daily basis.”
People aren’t going to get magically educated about diabetes, Jenny, not about the day-to-day survival act, or the difference between type 1 and type 2, or the dangers of DKA, or any of it, unless we make that education happen. And that means first we need to get people’s attention. And scaring them occasionally only goes so far. So as a community, let’s take it from here, please.
We’re making that our goal for National Diabetes Awareness Month, anyway.
Well said Amy, a balanced point of view. I too have mixed feelings about the ad and mostly, what it reminds me of are the scary, negative stereotypes that used to get center stage when I was first diagnosed in 1985. We have worked too hard to dispel the myths of diabetes such as: the 7th leading cause of death, blindness, amputations etc…negative myths and images of diabetes that used to keep me awake in the middle of the night, terrified that I would never be able to have children, never grow old, and that if I did grow old, I would be very sick. I am so glad that we have worked to change stereotypes of diabetes in these last 25 years, and that we have positive role models who are changing the face of diabetes, because I am no longer afraid of growing old. And this JDRF ad feels like a giant step backward.
I too, have mixed feelings about the ad. I feel like we can’t really judge the FDA without being on the inside. I also feel like for people with diabetes, the ad is welcomed but also a brutal reminder of our limitations and how we’re victims of this disease and I get a sense of a lack of empowerment to avoid becoming a 1 in 20 because of how the ad is bluntly worded. To me it’s a service and a disservice to the people with diabetes and the people who love them. After initially seeing the ad I had to take some time to build up my confidence again. I like feeling empowered by how I eat and live to know that I can truly minimize my risk of succumbing to a low blood sugar event. I want others to feel that they have the means to decrease their chances as well. The ad sort of gives the impression that we’re powerless against lows. Though to be honest, sometimes, living with type 1, one does feel powerless about lows.
@Amy Mercer: You say, “We have worked too hard to dispel the myths of diabetes such as: the 7th leading cause of death, blindness, amputations etc…” . This is not a myth. It is a fact: http://www.cdc.gov/nchs/fastats/lcod.htm.
You also say, “JDRF ad feels like a giant step backward.” I will argue that the most backward thing we can do is not see the facts as they are.
I don’t like scare tactics and I don’t think they work in the long run. But what if we view this as being not scared, but AWARE – aware of the risks, but empowered with the knowledge (and hopefully the tools) to minimize them.
Actually, the FDA might be motivated by such statistics. Ordinarily, the FDA has a routine which consists of comments from parties with a vested interest which is usually pharma/biotech/medical devices and perhaps some doctors, but seldom are patients even considered except as a third-party (a user of the device or medicine) without much regard for what these developments might mean in real life. By injecting the patient perspective into this conversation, the FDA might actually treat this differently than “business as usual”.
As a non-D parent of a D 9 yr old, I was horrified when I heard that stat and wanted to puke. I think it’s totally unfair to make parents of CWDs think that every night when they put their kid to bed, that kid has a 1 in 20 chance of not waking up in the morning.
But then someone pointed out that 1 in 20 is only 5%. Ans that 95% of D folk die of something else–heart disease, getting run over by a train, cancer, bopped on the head, car accidents, falling out a window, and every other thing that people die of. Also the ad doesn’t point out when these 5% die, which like most ppl is NOT at age 9. Likely they die mostly as older ppl like most other ppl. So when you look at it that way, it’s not as scary. Statistics can really be manipulated to support almost any point of view. Even if it’s accurate, it’s still deceiving.
It also exploits the myth that cute little innocent kids get the dangerous type of diabetes and should be saved, as opposed to the rest of us not-so-cute adults, who probably did something to deserve our fate.
I’m not saying everything shouldn’t be done to save kids like Piper. I’m saying we need to ensure that all of them, and all of us, are able to live long, full, normal, healthy lives, well beyond the cute, adorable years.
First, we need a reliable and easy-to-use CGM to drive the device. I shudder to think where I would be if my CGM determined my insulin dosage. Since July, with luck and a lot of perseverence, I have had a few days here and there when it has been spot on. But countless times it kept insisting I was low, when my meter said I was high , or it said I was fine, and I wasn’t, or the inverse, and it wouldn’t recalibrate or reboot. If this were driving an automatic shut-off system, or an artificial pancreas….
The FDA does have a responsibility to ensure that the technology works.
This idea that 1 out of 20 people living with T1D will die from a hypo event is a staggering and frightening message that none of us wants to hear. However, I believe it is a sound statistic, one that I am willing to stand behind.
Criticisms I have heard include:
“JDRF’s new messaging is going back to the old days of frightening people about failed kidneys, blindness and amputations in order to raise money.”
• My response is that the newspaper ads are not part of a fundraising campaign and don’t represent our new messaging. I agree that scaring or depressing people is not an effective way to raise money. The ads were a one-time statement as part of a campaign targeted to influencers of, and decision makers at, the FDA. The FDA has repeatedly told us that T1D is a “manageable disease” for which we have “acceptable therapies” available in the US. In order to make the point that we don’t have the tools we need to live safely with T1D, it is necessary to confront the unpleasant facts about how people live with, and unfortunately die from, this disease today. These ads won’t change the minds of the FDA, but as a part of an overall advocay campaign including a petition signed by over 100k people, our coordination of a consensus in the clinical community on this issue and continued grass roots legislative advocacy, the ads do show we are a serious organization committed to making our point of view known. We believe the ads, while costly, are a prudent use of precious donor resources to make the point that FDA policies are putting lives at risk.
“These statistics are based on the work of one individual, Phil Cryer.”
• These statistics are based on the work of many people over many years. Yes, Dr. Cryer is a primary reference based on work subject to the highest standards of peer review and recently published in the New England Journal of Medicine. Dr. Cryer is an acknowledged expert in this area.
“The statistic is based on data, some of which is very old and therefore doesn’t reflect improvements in care.”
• Some of the studies on which the statistic is based are old. However, the idea that death by hypo is less today than 20 or 30 years ago is not supported by the data. The most recent data shows a greater risk. This makes sense when we take into account that it has been in the last 20 years that people became fully aware that Hba1c drives the rate of complications. In any effort to lower average blood glucose levels and avoid long-term complications, patients are experiencing more hypoglycemia rather than less.
At the end of the day, whatever the numbert is, it is too high! Having had a son in intensive care for 2 days because of a life threating hypo, my family is lucky. For anyone who has lost a loved one, and I know many, the ratio is 1 in 1.
Jeffrey Brewer
President & CEO
JDRF
We have no interest in the AP because we are on MDI, but if we did want the AP I would not want the FDA pushed into approving it before it had been tested properly, especially since this mechanism, if found to be flawed, could have extremely serious health consequences, or perhaps even create the sensationalistic statistic you are so vehemently flouting.
@donna schindler – I do not think anyone is advocating approval without proper testing, rather it is how to define “proper testing”. The FDA’s proposed testing plan for Low Glucose Suspend (LGS) products (that are already approved and being used in many, many countries) is so overly bureaucratic and expensive (in time, money and lives that could be helped, but may instead be literally lost) that it boggles the imagination. LGS is the first step in an AP.
The result is the JDRF must step up their advocacy to get the attention of the non-diabetic public to demand change @ the FDA.
I don’t like these shock ads personally, but I also don’t like what the FDA is quietly doing (or really NOT doing), to create a better environment for managing diabetes.
The following quote was from a Dexcom press release: “Abnormally low blood sugar also can affect people with Type I diabetes at rest. The ‘dead-in-bed’ syndrome is a tragic outcome of a failure to adequately monitor glucose levels during sleep. It accounts for six percent of mortality in diabetic patients younger than 40 years old.(3)”
Clearly this is not the same thing as saying there is a 1 in 20 chance that a young child with type 1 diabetes going to sleep tonight will die. This mearely states that over a lifetime of type 1 diabetes which can easily stretch out over an average of 25 years that 6% of deaths are from low glucose.
Sometimes the inability of the general population to deal with the inplications of statistics is staggering and the way headlines are produced to amp up the volume only adds to this problem.
There is no way to prove or disprove this statistic, because there is no precedent for “HYPOGLYCEMIA” to be listed as a cause of death on Death Certificates. – Diabetic Coma will be listed as cause of death, and that can also be caused by DKA.
I think the true statistic should be reported, not the lower end of the spectrum. It is 6 to 10 out of a hundred die from hypoglycemia, isn’t it? And since it is difficult to isolate the true cause (probable hypoglycemia) the death certificate may not even reflect this. I believe deaths from hypoglycemia are grossly under reported. There were approx. 10 deaths reported on the DOC last year. Many people are not active in the DOC. And their deaths would go unreported in the online community. This is what keeps me awake most nights. Even knowing this statistic, I could never admit this could happen to our child, So I suffer from individual denial but not collective denial. Why is the diabetic community in collective denial. The research is available. Even the earlier research is 2 to 4 out of 100, close enough to the 5 in 20 cited.
Brewer and the JDRF are using a scare campaign to force the FDA into approving the artificial pancreas. Why? Because its approval is cemented in the fact that its the only viable, not to mention poster child, for the JDRF’s “Transformative Research” campaign. Which is nothing but marketing because we’ve seen nothing at the bedside that has truly made managing this illness easier, cheaper and less invasive. In fact, all we’ve seen is the complete opposite. JDRF, respond to that point?
I have been a type 1 for almost 30 years and have seen my costs skyrocket. I’ve also been a pump user for 14 years and can’t stand it. My body is ruined with scar tissue from the catheters and I also feel like endocrinologists are also quietly forcing their patients into adopting its use (pump and CGMS).
I have never supported the JDRF and never will since I don’t believe they are focused on making our lives better. It’s all window dressing and solely supportive of academia and their “alliances” with pharmaceutical companies and universities.
How about Smart insulin or islet cell encapsulation. It exists or could exist more quickly but all they will say is its years away, need more funding and etc.. but hey, “the AP” (which we have seen $ millions invested in) is now”.
I disagree with Brewer on his comment of “The FDA has repeatedly told us that T1D is a “manageable disease” for which we have “acceptable therapies” available in the US.”
This is so irresponsible on his part. If a cure or truly revolutionary treatment strategy proved effective and SAFE for all users, the FDA wouldn’t have the capacity to squash it under such a lame statement. The public outcry and constant media exposure challenging the FDA would be unbearable for them. The fact that the AP hasn’t caused such pressures must tell you somehting about the AP and its actual feasibility and safety.
Bottom line Brewer, we don’t want another high priced invasive technology that will only be available for a small population of users. We want a truly revolutionary non-invasive treatment or better yet a cure. That’s why you don’t get the kind of support for the artificial pancreas no matter how you try and spin it.
[...] campaign running in top-tier mainstream media in less than a year, but it takes a detour from the more biting and controversial ad that ran in November 2011. In that ad appearing in the New York Times and Washington Post , [...]