Advocacy of arthritis, osteoporosis increases government funding

Researchers at the University of Michigan found that when advocacy groups rallied for improved care for certain diseases, including osteoporosis and osteoarthritis, the government provided more research funding for those diseases than others not backed by advocacy groups.

“The downside is not every disease has this potential for strong advocacy,” sociologist Rachel Kahn Best, said in a press release.

Best studied 53 diseases between 1989 and 2007 using data from the National Institutes of Health and the Department of Defense Congressionally Directed Medical Research Programs to find out dollar amounts spent on diseases, including osteoporosis and arthritis. She gathered tax data on disease-related nonprofits and congressional hearings where advocates testified and then screened mortality data for the 53 diseases.

Best found advocacy organizations received millions more in research funding from the federal government and that the number of nonprofit organizations advocating for these diseases increased from 400 in the 1990s to 1,000 in 2003.

Best said advocacy has changed the way the government has provided funding, now providing money to patients with specific diseases rather than to scientists. Additionally, Best found that advocacy groups requested research funding based on mortality rates rather than scientific criteria.

“In the years I studied, the National Institutes of Health budget was expanding rapidly,” Best said in the release. “But in more recent years, we have 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.”

Reference:

Best RK. Disease politics and medical research funding: Three ways advocacy shapes policy. Am Soc Rev. 2012;77(5):780-803;doi: 10.1177/0003122412458509.