Advocacy's Power and the Disease Olympics

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.“I asked him, Dick, why haven’t I heard from anyone on this?” Eshoo recalls. “And in a rapid-fire answer he said, because they’re dead.”Eshoo learned that only 6 percent of people diagnosed with pancreatic cancer live longer than five years, and 74 percent die within a year. “The needle, so to speak, had not moved in half a century,” Eshoo says. “That, in and of itself, was an indication that whatever we were doing was clearly not enough.”Over the next couple of years, PCAN’s advocacy efforts grew more visible because of emotional Congressional testimony by Carnegie Mellon professor Randy Pausch, who was dying of pancreatic cancer, and the news that actor Patrick Swayze was diagnosed. Eshoo introduced a bill, called The Pancreatic Cancer Research and Education Act, in September of 2008, then re-introduced it in January of 2009 and again in February 2011. As originally written, the bill would have directed the federal government to spend $888 million over five years on research and awareness campaigns focused solely on pancreatic cancer.Read more at...Only Human, March 2013.