The Disease Olympics

By Virgina Hughes via Nature Medicine

The massive rise of patient advocacy in the US has led to an aggressive, if inadvertent, contest between disease-specific lobbyists. Advocacy groups say they're just trying to get taxpayer-backed research dollars distributed equitably according to public health need and they deny any outright competition with one another. But with research budgets shrinking, advocacy becomes a zero-sum game. Some scientists worry that pitting one disease against another threatens the leadership of government funding bodies—not to mention the basic research enterprise.

Excerpt from the original article with CTSI Director Clay Johnston's remarks:

Whether advocates have any real influence on what's ultimately funded remains difficult to pin down. A team led by Clay Johnston, director of UCSF's Clinical and Translational Science Institute, recently published an analysis of 2006 NIH funding levels for 29 common conditions, ranging from schizophrenia to various types of cancer3. They found that funding is not strongly aligned with burden of disease—measured by years of life lost to disability or death. Disease burden accounted for just 33% of funding level variation in 2006, down from 39% in a similar analysis4 done in 1999. The second-tier councils can choose not to follow the rankings suggested by the CSR. “But in practice,” says Johnston, “it's not clear how often that actually happens. For many institutes, they don't want to mess with that order from peer review.”


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