The Pulmonary Fibrosis Foundation (PFF) has enlisted former New York Yankees baseball champion Bernie Williams to help lobby U.S. lawmakers for more federal funds to develop safe and effective therapies for an incurable disease that affects up to 200,000 Americans and kills more than 40,000 annually.
During a recent Capitol Hill advocacy session, Williams specifically appealed for a $2 billion increase in the National Institutes of Health (NIH) budget for fiscal 2018, and a $2.8 billion increase for the U.S. Food and Drug Administration (FDA).
“My father passed away from idiopathic pulmonary fibrosis (IPF) and I’m eager to raise awareness of the disease,” Williams said in a PFF press release. “He taught me everything I know about life and baseball. I saw my father as an indestructible presence, but his condition was not curable and it took his life.”
Williams, a star center fielder, four-time World Series Champion and five-time baseball All Stars player, said his father, Bernabe Williams Sr., died of IPF in 2001 at the age of 73.
The younger Williams’ subsequent PF advocacy has included a partnership with Germany’s Boehringer Ingelheim Pharmaceuticals as spokesman for its “Breathless” campaign to increase awareness about IPF. The lung tissue of people with this disease becomes progressively fibrotic, or scarred, limiting oxygen intake and depriving the brain, heart and other vital organs of the oxygen they require in order to function properly. The disease typically leads to death within three to five years without proper treatment.
“You don’t have to suffer silently. There are therapies to help,” said Williams, who relates his father’s story in a video. “If you or someone you know appears to be experiencing this devastating disease, there are resources to help.”
During the PFF’s inaugural Hill Day session in Washington, IPF patients, caregivers and families from 14 states met with 54 members of Congress to tell lawmakers how the disease affects their constituents and districts. Over the past decade, the PFF has awarded $4 million for research, resulting in more than $95 million in associated NIH funding. It has also testified at numerous FDA hearings focused on expanding resources and treatments for people living with PF.
“Already, research has led to two treatments to slow the progression of pulmonary fibrosis, but we need more,” said PFF board member Terence Hales. “Now is the time to expand our advocacy efforts, and we are doing exactly that.”
PFF’s ramped-up advocacy initiative includes creating partnerships with other health organizations to broaden outreach and strengthen the cause for increased PF research. This November, the PFF will hold its fourth biennial healthcare conference on pulmonary fibrosis, PFF Summit 2017, in Nashville, Tennessee.
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