The Pink Ribbon Lobby and Everyone Else

Disease-specific lobbying and the allocation of health research funding

Published on October 26, 2012by Abdul El-Sayed

The National Institutes of Health (NIH), the $31 billion enterprise that funds our country’s medical research, is by many opinions one of the greatest public goods our government provides Americans, as well as the rest of the world. NIH funding has underwritten many of the greatest discoveries in the health sciences over the past 50 years.

How the NIH allocates that $31 billion, however, remains a bit of an enigma. Yet a recent  article in the American Sociological Review is clarifying—if not disturbing.

The article, which explored NIH (and Department of Defense) disease-specific funding patterns in relation to changes in the density and lobbying dollars of disease-specific interest groups, suggests that interest groups can successfully lobby the NIH to increase the amount of funding allocated to their diseases of interest.

The findings are at once reassuring and deeply unsettling.

For people suffering with certain diseases, the idea that their voices, along with others afflicted with similar ailments may be heard and listened to certainly has appeal. Even as the research horizon is long, and investments may not yield tenable improvements in disease outcomes within their lifetimes, it’s satisfying to know that their advocacy may have “made a difference.”

But here’s the catch. We all get sick, and everybody dies of something. And what’s to say that one person’s cause is more important than another’s?

Health research funding has the peculiar characteristic of having the potential to be almost perfectly allocated to reflect the distribution of the very thing its intended to remedy—instead of voting with their feet, people can literally vote with their health. For that reason, a 1998 report from the Institute of Medicine, a national body comprising the leading health experts in the country, recommended that the allocation of the NIH budget should primarily reflect “public health need.” While the report recognizes the inherent complexities in determining exactly what that “need” means—it certainly suggests that data, rather than lobbying, should drive the NIH budget.

The results of this recent study suggest that reality has been otherwise.

Why the disconnect? Consider the following example: My Manhattan apartment features a great view of the George Washington Bridge, which connects the island to New Jersey. The “necklace” lights on the bridge are currently pink, for “Breast Cancer Awareness Month.” For the same reason, this past weekend, I watched my beloved Michigan Football Wolverines narrowly beat our cross-state rivals, Michigan State—in pink cleats and arm bands.

The breast cancer lobby has done an incredible job raising my “awareness” of Breast Cancer—if I weren’t an epidemiologist, it would have me believing that the women around me were in imminent danger. And perhaps they are—but the numbers suggest other diseases I should be far more worried about. In fact, women are twice as likely to die of lung cancer than breast cancer, and nearly six times as likely to die of heart disease.

Then why all the focus on breast cancer? Because it has organized and powerful advocates, including the Susan G. Komen Foundation, a juggernaut in disease lobbying. And the NIH-funding to breast cancer is evidence of that: the American Sociological Review article didn’t even include breast cancer in its analysis because it was such an outlier in both the amount of lobbying money it spent and the allocation of funding received.

All of this is not to say that breast cancer isn’t an incredibly important disease, which it is. And given the gendered history of public health, medicine, and research in our country, the social focus on breast cancer is warranted. However, the reallocation of public funds disproportionately to breast cancer is certainly not.

We’re left with an important question—why do some diseases attract so much support anyway?

The answer is complex, for certain. But two possible answers could spell problems for equity in health research allocation. First, it’s possible that those diseases with the strongest advocacy are the ones that have the highest survival. After all, those once or currently affected by a disease are most likely to advocate for funding allocation to it. It’s also possible that advocacy is a function of the social power and privilege of those most likely to get a disease—one of the findings of the article. If so, that would mean that disease-specific lobbying would drive funding toward more survivable, less deadly diseases more likely to affect those with access to treatment. In effect, this would drive funding away from those who need it most—a predicament indeed.

To quote John Maynard Keynes: “In the long run, we’re all dead.” But it sure would be nice if we all had the same fighting chance.

Edited by Dana March