Patient-led advocacy has changed how US government funds medical research

October 1, 2012, American Sociological Association

Patient-led advocacy has created a shift in the way the U.S. government has prioritized funding for medical research, and significantly changed the way policymakers think about who benefits the most from these dollars, a University of Michigan School of Public Health fellow in the Robert Wood Johnson Foundation Scholars in Health Policy Research Program found.

In "Disease Politics and Medical Research : Three Ways Advocacy Shapes Policy," a paper published in the October issue of the , Rachel Kahn Best analyzed data on 53 diseases over a 19-year period from 1989-2007.

She found that those diseases tied to strong advocacy organizations received millions of dollars more in research funding over the period than others whose advocates were not as strong. She also found an increasing number of these organizations, from about 400 large working on disease advocacy in the early 1990s to more than 1,000 by 2003.

In addition, Best noted another fundamental shift in policy brought about by advocacy. Where policymakers once focused on providing dollars to the scientists who made the best case for funding—with the general population thought of as the beneficiaries of their research—the government began to think of patients with particular diseases as the recipients of the research funds. This resulted in funding based on "perceived moral worthiness."

"The downside is not every disease has this potential for strong advocacy," Best said. "In addition to things like and , which lose out because of the 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.

"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."

Best also found that advocacy groups created political pressure to have funding allocated in line with mortality rates. After activists mobilized against an initially weak response to AIDS, it eventually received more research funding than any other disease.

Subsequently, advocates for other diseases protested that they were receiving fewer "dollars per death." Policymakers then pressured the NIH to bring the funding distribution more in line with mortality, even though NIH officials preferred to set priorities based on scientific criteria.

To reach her conclusions, Best collected data from the NIH and the Department of Defense—Congressionally Directed Medical Research Programs to determine dollars spent on various diseases. She gathered tax data on disease-related nonprofits and collected data on congressional hearings at which disease advocates gave testimony. She also reviewed mortality data for the 53 diseases that ranged from various cancers and influenza to hypertension and diabetes.

Explore further: Thinking about health as an investor might

Related Stories

Thinking about health as an investor might

May 14, 2012
(Medical Xpress) -- A “proof-of-concept” study applying financial portfolio theory to U.S. biomedical research funding shows that the nation’s health might gain the largest benefit by increasing funding on ...

Patients with rare diseases to get DNA sequenced at no charge

March 1, 2012
Rare genetic diseases, long overlooked because they affect relatively few people, are getting new attention. Scientists at Washington University School of Medicine in St. Louis are reaching out to patient advocacy groups ...

Study finds HIV/AIDS funding does not undermine health care services for other diseases

May 3, 2012
While the battle against HIV/AIDS attracts more donor funding globally than all other diseases combined, it has not diverted attention from fighting unrelated afflictions -- such as malaria, measles and malnutrition -- and ...

Advocacy toolkit launched to halt the 'runaway train' of cancer in Africa

September 6, 2012
Cancer kills more than seven million people a year throughout the world. This is more than HIV/AIDS, tuberculosis and malaria combined, and African countries, which carry a large part of the burden, are the least able of ...

Recommended for you

Placental accumulation of flame retardant chemical alters serotonin production in rats

January 22, 2018
A North Carolina State University-led research team has shown a connection between exposure to a widely used flame retardant chemical mixture and disruption of normal placental function in rats, leading to altered production ...

Marijuana use does not lower chances of getting pregnant

January 22, 2018
Marijuana use—by either men or women—does not appear to lower a couple's chances of getting pregnant, according to a new study led by Boston University School of Public Health (BUSPH) researchers.

Americans are getting more sleep

January 19, 2018
Although more than one in three Americans still don't get enough sleep, a new analysis shows first signs of success in the fight for more shut eye. According to data from 181,335 respondents aged 15 and older who participated ...

Wine is good for you—to a point

January 18, 2018
The Mediterranean diet has become synonymous with healthy eating, but there's one thing in it that stands out: It's cool to drink wine.

Sleep better, lose weight?

January 17, 2018
(HealthDay)—Sleeplessness could cost you when it's time to stand on your bathroom scale, a new British study suggests.

Who uses phone apps to track sleep habits? Mostly the healthy and wealthy in US

January 16, 2018
The profile of most Americans who use popular mobile phone apps that track sleep habits is that they are relatively affluent, claim to eat well, and say they are in good health, even if some of them tend to smoke.

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.