Patient-led Advocacy Changed Distribution of Medical Research Funding

Disease advocacy organizations can systemically change the culture of public policy by reshaping funding distribution, changing the perceived beneficiaries of policies, promoting new metrics for commensuration and making cultural categories of worth increasingly relevant to policymaking, according to recent study results.

“In the 1990s, patient advocates helped push for increases in the NIH budget, but these changes could lead to the budget being increasingly shifted to the diseases with the most advocacy and away from diseases that have big scientific potential but less public appeal,” Rachel Kahn Best, PhD, a Robert Wood Johnson Foundation Scholar in Health Policy Research at the University of Michigan, told O&P Business News.

Advocacy for funding

Best constructed a longitudinal dataset with information on 53 diseases from 1989 to 2007. Data were collected on the amount of federal medical research funding, advocacy targeting and the number and characteristics of people who died each year from each disease.


Rachel Kahn Best


“My first finding is that organizing matters. The federal government tends to give bigger funding increases if a disease has a lot of nonprofits and if they spend a lot of money lobbying,” Best said. “In some ways it’s a good thing for patients to have a voice in government, but my concern is that disease without the potential for strong advocacy will get left behind.”

Overall, diseases tied to strong advocacy organizations — which had increased from 400 large nonprofits in the early 1990s to more than 1,000 by 2003 — received millions of dollars more in research funding over the period than others whose advocates were not as strong. Advocacy groups created political pressure to have funding allocated in line with mortality rates, and, according to Best, “congressional representatives tend to view disease advocates more favorably than other lobbyists because disease advocates do not directly profit from medical research expenditures.”

“The downside is not every disease has this potential for strong advocacy. In addition to things like lung cancer and liver disease, which lose out because of the social stigma tied to those diagnoses, there are diseases like pancreatic cancer, whose patients often don’t live very long after diagnosis and, therefore, don’t have time to tell their stories,” Best stated in a press release. “In the years I studied, the National Institutes of Health budget was expanding rapidly. But in more recent years, we’ve seen a leveling off of what funding is available. It will be interesting to see if, after the time period I studied, disease advocates have become more competitive in their efforts to secure a share of the dollars.”

Patients vs. scientists

Best found that patients eventually became thought of as the primary beneficiaries of medical research funding, rather than scientists or the public at large, increasing the relevance of moral worthiness to funding decisions. “Advocates for certain diseases began to argue that individuals suffering from their disease were innocent victims, with the implication that other diseases merited less support,” according to Best, causing some diseases to receive more government funding. However, Best believes that scientific input is important in making funding decisions and should be considered along with advocate input.

“I think it’s important to preserve a strong level of input from scientists in priority setting discussions and to remember that there are lots of reasons why diseases are important targets for public funding,” Best concluded. “I hope that studies like mine can remind policymakers that it’s important to follow scientific potential, as well as paying attention to diseases that have become big public issues.” — by Casey Murphy

For more information:
Best RK. Am Sociol Rev. 2012;77:780-803.

Disclosure: Best has no relevant financial disclosures. Research funds for the study were provided by the Office of NIH History; the UC-Berkeley Science, Technology, and Society Center; and Berkeley Law’s Empirical Legal Studies fellowship.

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