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.