Advocacy's Power and the Disease Olympics

By Virgina Hughes via National Geographic

One day in 2007 Ambassador Richard Sklar, who had pancreatic cancer, and Julie Fleshman, head of the nonprofit Pancreatic Cancer Action Network (PCAN), visited the D.C. office of House Representative Anna Eshoo to see if she might consider sponsoring legislation for more pancreatic cancer research. Sklar and Eshoo were friends.

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

On the other hand, it’s interesting that the rise of disease-specific organizations came at the same time that the NIH budget was growing rapidly. During that period, advocacy wasn’t a zero-sum game: the government could put more money into one disease without taking from another. With the budget cuts, though, advocates could get much more competitive. “It would be a shame if that meant that diseases that had stronger advocacy would be preserved at the expense of diseases without advocates,” says Clay Johnston, director of UCSF’s Clinical and Translational Science Institute. “We would all suffer from that.”