Distribution of NIH Research Funds by disease

This table from the latest newsletter from the FAIR foundation was interesting, showing research money allocated by the US National Institutes of Health (NIH) per disease.

If you have questions about this, you can ask Richard Darling (he is one of our members).

You can also read (and subscribe to) their newsletter:

I would call your attention to my earlier posting which contained Deb Butterfield’s assessment of the situation about how diabetes does not receive the same proportion of Federal Research funding (which was written, incidentally, in 1992 … how little has changed in the past decade!), in part, because we send decidedly mixed messages about diabetes … is it a really serious disease that needs to be cured, or is it controllable? (If you’re trying to lobby Congress for funding, “both” is not a terribly convincing answer, especially if you’re fighting over which disease should get funding!) Here is an excerpt from her article on this subject:

Is diabetes as life threatening as cancer or AIDS? The answer is an unequivocal “yes,” in fact, more people die every year from diabetes than from breast cancer and AIDS combined, but you would never know that from the level of government spending on research for each of the diseases. Research funding is highly subject to how effectively advocates lobby for their particular disease. Take, for example, funding for prostate versus breast cancer. Although they both cause about the same number of deaths per year, funding for breast cancer is five times higher than for prostate cancer. According to Gary Becker, the 1992 Nobel Laureate, breast cancer research is “so much better funded partly because sufferers are better organized for political activity. Men have tended to keep quiet about their prostate cancers.” Becker notes that AIDS research receives four times the funding of breast cancer, and more than 20 times the funds of prostate cancer. “The political effectiveness of AIDS activists surely helps explain why a much larger chunk of the federal budget is allocated to AIDS research than to other terrible and painful ailments,” Becker writes.

The government spends $1,700 on AIDS research for each person with AIDS, but less than $20 on diabetes research for each person with diabetes. Advocates for AIDS and cancer encourage financial and political support with well-publicized reports of each research success and imminent breakthrough in treatments for their diseases, yet have remained staunchly focused on cures. In contrast, we send mixed messages about diabetes. In an effort to encourage optimism and confidence diabetes magazines and educational materials show images of active, healthy people “managing their condition” with a “no problem” attitude. Pharmaceutical companies use images and slogans of smiling diabetic people holding syringes and blood glucose monitoring equipment – the symbols of diabetes. But the disease itself is not revealed.

The public perception of diabetes is influenced by our personal testimonies, and we have portrayed a disease that is no more than a minor inconvenience.

In order for this disease to be cured, there needs to be a fundamental shift in the way diabetes is viewed. We need to close the gap between the perception of diabetes as a controllable condition and the reality that it is one of the world’s oldest, deadliest, and most pervasive diseases.

As a positive note, I should add that with Type 1 diabetes in particular, patients (and parents of children with diabetes) have taken a different tact: rather than relying on government funding, the Juvenile Diabetes Research Foundation which is a charitable foundation, is set to fund more than $1 billion per year ... for approximately 1.3 million patients. This works out to about $1,000 per patient.

Thanks for sharing this incredible piece, Scott.

These numbers sure are eye-opening… and sad too. Indeed little has changed in the past decade and a half. I strongly feel, by helping MORE people touched by diabetes connect, we will gradually start getting diabetics out of the “closet” and into a life of participation and community involvement so we can begin to make a bigger impact on legislation and other decisions being made every day about where research funds go to.

The coming month of July we will be making a call for “Word In Your Hand” photos again.

We could set a goal for ourselves to break a record and make our video with photos get media attention and keep pushing, keep pushing. I trust so much in the power of community!

That will be great! im sure we can all think of so many more words to write on our hands! Probably a new one each day.