More than 60 teen advocates from across the country — 25 of whom live with CF — participated in the Cystic Fibrosis Foundation’s 14th Annual Teen Advocacy Day on June 23.
The hybrid event, brought together teens living with cystic fibrosis advocating online, and teens with a connection to CF meeting with lawmakers in person in Washington, D.C. These young advocates participated in a half-day training program where they learned how to tell their CF story and master the art of making a policy ask, with many teens connecting in person for the first time in more than two years.
In more than 135 meetings with members of Congress, teens asked their lawmakers to co-sponsor and pass the PASTEUR Act, a bipartisan proposal that, if passed, would revitalize the global marketplace for novel antibiotics. Along with their unique stories that showcased the effects of antibiotic resistance and the human impact associated with the lack of effective antibiotics, teens also shared information about the CF Foundation’s Infection Research Initiative and its commitment to help prevent another pandemic.
“It’s incredible to watch teenagers drive action on the Hill year after year during Teen Advocacy Day,” said Mary Dwight, senior vice president and chief policy and advocacy officer of the CF Foundation. “These young advocates are well-versed in what life looks like when you are constantly fighting an antibiotic-resistant infection. Cystic fibrosis is a microcosm of the risks of persistent antibiotic use and the potential effects of antibiotic-resistant organisms. If we don’t prioritize this issue today, we could be on course for a pandemic that, unlike the one we currently live in, is preventable.”
The Foundation serves as the leading patient voice in a broad coalition advocating for the PASTEUR Act. In March, more than 160 advocates, including more people living with cystic fibrosis than ever before, raised their collective voices to advocate for the PASTEUR Act during the Foundation's 15th annual March on the Hill. Since then, more than 2,600 community members reinforced their messages to lawmakers by sending nearly 7,300 messages to advance this critical piece of legislation. Over the last two years, these focused advocacy efforts have made a difference through adding more than 25 co-sponsors to the bill.
About Advocating With the CF Foundation
As part of the Foundation’s mission to cure cystic fibrosis, the CF Foundation, alongside the cystic fibrosis community, advocates for policies and programs that promote access to highly specialized CF care and advance research and drug development.
In 2021, volunteer advocates called on lawmakers to support policies that protect the interests of the CF community, including COVID-19 relief and vaccine allocation, and support for state-level CF programs. In total, the community sent nearly 10,000 messages to members of Congress, met with more than 50 first-term Congressional offices, and continued building their networks locally to expand the advocacy base across the country.
Interested in becoming an advocate? Find out more about the Foundation’s advocacy work on cff.org/advocate.