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Why Diabetes Advocacy Has a Problem

If we were in the same room, I’d be willing to bet that you didn’t know that November is National Diabetes Month. Why should you?

This event comes around every year at this time. I know about it only because public relations people write or call me to publicize something or other in connection with it.

Trying to get people to think about diabetes for one month of the year is not my idea of effective advocacy. I think about diabetes a lot more often than that, and I guess that you do too. Even if we thought about diabetes all year long, that would be awareness, not advocacy.

Some organizations that include the word “diabetes” in their names sponsor events that also include the word “cure.” They talk a lot about curing this incurable disease, and they have good reason to talk the talk, while failing to walk the walk.

Here in Colorado you can pay a little extra and get a license plate that says, “JDRF: Improving Lives — Curing Type 1 Diabetes.” If you live in Indiana, your car’s license plate can read, “Stop Diabetes.” Other states offer other license plates to bring more attention to diabetes and the organizations that talk about it.

Talking about curing diabetes raises money and awareness for these organizations to continue. This is fundraising, not advocacy. In fact, none of us who have diabetes are doing any advocacy well.

In addition to writing about diabetes, I do some of what we call “patient advocacy.” But this is essentially advocating for better treatment and understanding of the needs of people with diabetes at the hands of our medical professionals.

True advocacy is organizing to demand funding for research. Inspired by the successes of the AIDS and breast cancer movements, more than 1,000 disease advocacy organizations are lobbying Congress for medical research funding.

This information comes from “Disease Politics and Medical Research Funding” by Rachel Kahn Best, Ph.D., of the University of Michigan in the October issue of the American Sociological Review. The full-text of Dr. Best’s article is online.

Diabetes research therefore has many more competitors for federal research dollars than ever before. The two biggest funders are the National Institutes of Health and the Department of Defense-Congressionally Directed Medical Research Programs.

Funding in 2007 (the most recent year for which data is available) for diabetes research by these two organizations came to $616,838,900 (in 1987 dollars with a 5-year moving average), according to information that Dr. Best told me. Maybe, this sounds like a lot of money. But let’s put it in context.

In that same year and on the same basis these two organizations spent $8,912,000,000 to  research the 53 diseases that Dr. Best studied (personal communication from Dr. Best). Diabetes therefore got just 14 percent of that amount.

This doesn’t seem to be a fair share considering how widespread and dangerous diabetes is. A lot of Americans have diabetes. In fact, nearly 26 million of us have it, and one-third of Americans have pre-diabetes, according to the government’s statistics. Diabetes is the seventh leading cause of death in the United States, behind only heart disease, cancer, chronic lower respiratory diseases, stroke, accidents, and Alzheimer’s disease, according to the Centers for Disease Control and Prevention.

But decided whether diabetes is underfunded or not is a complicated question, Dr. Best tells me. “It’s also a complicated question whether a disease has enough advocacy or not,” she says. “It’s hard to rank diseases on these scales because there are lots of different ways to compare diseases, including mortality, prevalence, amount of suffering, and potential for scientific progress.”

I think that the biggest problem that diabetes advocacy faces is her last point. If somebody does find a cure for diabetes and succeeded in stopping it, that would indeed reduce suffering and save lives. The biggest diabetes organizations have been long been promising a cure in five or 10 years.

It isn’t happening, and it’s not for lack of trying. Stem cell research, xenotransplantation, islet cell transplantation, better drugs, and more all offer promise. The promise is greater for curing — or at least preventing — type 1 diabetes than the much more prevalent type 2, even though we don’t yet know what causes type 1.

We don’t know what causes type 2 either. Several things can cause type 2 diabetes, including genetics.

But we do know that diabetes and obesity occur together more than you would expect by chance. The connection can’t be that obesity causes diabetes, because if it did, even more people would have it. And we do know that reversing obesity can sometimes also reverse type 2 diabetes.

Reversing obesity in this country is, however, a social problem, not a research problem. As long as our government subsidizes corn, wheat, rice, and sugar, most Americans will consume more of these fattening foods that contribute to the related diabetes and obesity epidemics. Likewise, as long as big food companies continue to influence public policy we will continue to eat too much.

The strange thing is that socially other people — even including some people who have type 1 diabetes — continue to stigmatize type 2 diabetes while accepting that Americans are just naturally getting fatter. Eating huge portions, particularly in the holiday season, is acceptable, while the results aren’t. We are being stigmatized even though being fat is the American way.

Consequently, as my friend Bob Fenton points out, “Many people with type 2 diabetes do not talk about it or attempt to draw attention to it or themselves.” The result is that we can’t be much of an advocate for diabetes unless we talk and write about it.

More and more people will have diabetes as long as our society fosters it and those of us who have it remain silent. So let’s stop blaming our diabetes organizations for being ineffectual.

As Pogo said, “We have met the enemy and he is us.”

This article is based on an earlier version of my article published by HealthCentral.

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  • Judy at

    Because the media and the medical community tell everyone that obesity ’causes’ Type 2 Diabetes instead of saying obesity is a ‘symptom’ of Type 2. Diabetes will always be viewed in the same light of smoking.

    I believe, most of us with Type 2 were born with the genetic predisposition for it and are sub-clinical until we are in our forties or fifties. My fasting blood sugar was 110 when I was 18 and nobody thought a thing of it. I would bet I have alway been a diabetic just sub-clinical based on body-type and those blood sugars. I wonder if Glucose Tolerance Tests were done for people with family histories of diabetes early, if then, diet and exercise modification could be started before the need for drugs.