On June 26, more than 150 volunteers from across the country representing 33 states met with members of Congress and staff during the Foundation’s 17th annual Teen Advocacy Day. 

Teen Advocacy Day brings together young adults and their families from across the CF community to advocate for policies that protect people with CF and celebrate the progress made over the last generation. The event also includes a virtual component where nearly three dozen teenagers with cystic fibrosis met with their congressional offices virtually.

This year, volunteers visited Capitol Hill at a critical moment. Advocates urged their members of Congress to reject proposed cuts to Medicaid and the marketplace in the budget reconciliation package, which will cause people with CF to lose their coverage.

“Now more than ever, it’s essential that young people understand the power of their voices,” said Mary Dwight, senior vice president and chief policy and advocacy officer of the Cystic Fibrosis Foundation. “The teens who advocated this week shared stories that showed policymakers that the next generation isn’t waiting to shape the future of CF — they’re already doing it.”

While advances in CF care are helping people live longer, healthier lives, cost and access are barriers  for many people with the disease.  Medicaid is a critical lifeline for many people with cystic fibrosis, providing coverage to half of children and one-third of adults living with CF. Because CF is a progressive disease, access to consistent care and specialized therapies is essential. Gaps in coverage can lead to delaying or forgoing care, which puts people with CF at risk of declining health, irreversible lung damage, and costly hospitalizations.  

Congress has proposed a reconciliation package includes several provisions that will cause people with CF who rely on Medicaid to lose coverage, including implementing work reporting requirements, mandating cost-sharing, and restricting funds to states. For people with CF, losing coverage isn't just a financial setback; it's a health crisis waiting to happen. Advocates shared their personal stories around access to care, and made it clear that losing coverage would jeopardize the advances CF is known for today.

Along with volunteers on the Hill, more than 330 community members representing 40 states participated in the Foundation’s Online Day of Action. Advocates nationwide sent nearly more than 1,300 messages and phone calls to their lawmakers, amplifying the community’s collective voice on the Hill.

Previous Teen Advocacy Day advocates Thomas Rolefson and Hailey Peterson, siblings of people with CF, and Aine Stevens and Serena Scillia, young adults with CF, served as Teen Advocacy Day interns. During their tenure, the group lent their expertise to help craft the event’s program and connect with virtual and in-person attendees.  

Interested in adding your voice to the CF community’s robust advocacy based? Sign up for Foundation’s advocacy alerts.