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

October 1, 2012

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

The role of dosage in assessing risk of hormone therapy for menopause

July 27, 2017
When it comes to assessing the risk of estrogen therapy for menopause, how the therapy is delivered—taking a pill versus wearing a patch on one's skin—doesn't affect risk or benefit, researchers at UCLA and elsewhere ...

Blowing smoke? E-cigarettes might help smokers quit

July 26, 2017
People who used e-cigarettes were more likely to kick the habit than those who didn't, a new study found.

Brain disease seen in most football players in large report

July 25, 2017
Research on 202 former football players found evidence of a brain disease linked to repeated head blows in nearly all of them, from athletes in the National Football League, college and even high school.

Why you should consider more than looks when choosing a fitness tracker

July 25, 2017
A UNSW study of five popular physical activity monitors, including Fitbit and Jawbone models, has found their accuracy differs with the speed of activity, and where they are worn.

Safety of medical devices not often evaluated by sex, age, or race

July 25, 2017
Researchers at Yale and the University of California-San Francisco have found that few medical devices are analyzed to consider the influence of their users' sex, age, or race on safety and effectiveness.

Dog walking could be key to ensuring activity in later life

July 24, 2017
A new study has shown that regularly walking a dog boosts levels of physical activity in older people, especially during the winter.

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.