Rachel Kahn Best
Date: February 1, 2013
I often receive emails from friends who are walking, running, or biking to raise funds to fight leukemia, AIDS, or Alzheimer’s. During breast cancer awareness month, I watch everything from yogurt containers to football players’ shoes turn pink. More than any other problem, diseases unite corporations, charities, and the public in an enthusiastic campaign to raise money and awareness.
This outpouring of public attention to fighting diseases is something new. Earlier in the 20th century, charitable crusades targeted tuberculosis, polio, cancer, and heart disease. But these were public health campaigns led by philanthropists and physicians. Since the 1980s, people with serious diseases have founded thousands of nonprofits, launched fundraising drives, publicized ribbons and walks, and lobbied Congress for funding for research on their conditions. The new disease advocacy is different in scale, with thousands of organizations targeting hundreds of diseases. It’s also different in quality: The new disease advocacy organizations seek to represent the interests of patients.
As a sociologist, anytime I see such a big social change, I’m interested in its effects—intended and unintended. For an article that I recently published in the American Sociological Review, I analyzed data on 53 diseases from 1989 to 2007, and I found that the new disease advocacy has transformed the politics of federal medical research funding in ways that raise some concerns.
In the years I studied, diseases tied to strong advocacy organizations (with AIDS and breast cancer leading the pack) received large increases in research funding. On average, every thousand dollars spent lobbying the government paid off with a $25,000 funding increase the following year. But not every disease has the potential for strong advocacy. For instance, pancreatic cancer is targeted by relatively few organizations, in part because patients don’t usually live long after their diagnoses. Less-organized diseases tended to receive much smaller funding increases.
As disease advocates increasingly held the National Institutes of Health accountable for the distribution of funds to particular diseases, scientists worried that they would be less able to get funding for grants based on their scientific potential. Moreover, disease advocacy encouraged policymakers to think more and more about which patients “deserve” help.
Policymakers used to frame the issue of medical research funding in terms of supporting scientists and their work. In 1963, NIH Director James Shannon told Congress that the NIH deserved its large budget because it gave money to deserving scientists: “The national figures are very large… . But when you go from a national picture to a State … and begin to recognize institutions and scientists, you begin to understand the role they play in the community life.”
Today, however, policymakers often talk as though they were giving money to patients, saying things like “breast cancer patients deserve more research funding.” Because some patients are more politically attractive than others, it’s become harder for stigmatized diseases to get funding. Lung cancer and liver cancer, for example, are at a disadvantage in the new competition for funding because of the stigma associated with these diagnoses.
These unintended consequences have the potential to distort the nation’s health agenda. As patients become an increasingly powerful constituency, researchers must speak out to ensure continued attention to diseases without advocates, research projects that don’t target single diseases, and stigmatized conditions.
Disease advocates have raised millions of dollars for research, empowered patients to share their experiences, and challenged imperfect treatment practices. I enthusiastically support their efforts, but I worry about what will happen if patients’ concerns dominate the medical research agenda. Federal investments in medical research funding should respond to the concerns of today’s patients—but not at the price of limiting scientific flexibility or neglecting important public health threats. *
Rachel Kahn Best is a Robert Wood Johnson Scholar in Health Policy Research and an assistant professor of sociology at the University of Michigan. She is currently writing a book about the rise of disease advocacy.