Last week, nearly 300 advocates representing 46 states and the District of Columbia gathered in Washington, D.C., for the 19th annual March on the Hill, raising their voices with one clear message for Congress: people with cystic fibrosis need uninterrupted access to affordable, comprehensive, health care to live longer, healthier lives.

Additionally, nearly 1,000 advocates from across the country participated in the Foundation’s Online Day of Action, sending 3,500 messages to members of Congress, amplifying the already powerful voices of the CF community.

Each year, March on the Hill brings together members of the cystic fibrosis community — including people with CF, family members, care partners, and volunteers — to meet directly with lawmakers and congressional staff. These meetings allow advocates to share personal stories about living with a complex, lifelong disease, and to urge support for policies that address the real-world needs of people with CF.

During the more than 230 meetings on Capitol Hill, advocates pushed lawmakers to support policies that make health care truly affordable — not just on paper, but in practice. Real affordability means predictable costs, comprehensive coverage, and uninterrupted access to the treatments and services people with CF rely on every day. It also means protecting people with chronic conditions from having to make devastating decisions that could jeopardize their health, such as whether to skip treatments or care because they are too expensive.

“For people with cystic fibrosis, health care affordability is not abstract — it’s deeply personal,” said Mary Dwight, senior vice president and chief policy and advocacy officer at the Cystic Fibrosis Foundation. “When costs become unpredictable or coverage falls short, people are forced into making impossible choices that can permanently damage their health. March on the Hill gives lawmakers a direct reality check from the CF community on the consequences of their policies — and what meaningful, patient-centered affordability truly looks like.”

A key focus of this year’s event was to advocate for the HELP Copays Act, a bipartisan bill that would help lower out-of-pocket costs for people who rely on expensive, specialty medications, such as CFTR modulators. If passed, it would require insurance companies to count third-party assistance toward deductibles and out-of-pocket limits. It would also close gaps that allow some health plans to treat essential medications as “non-essential,” making it easier for plans to deny coverage.

Advocates also asked Congress to oppose health care proposals that rely on health savings accounts (HSAs) paired with high-deductible health plans as an affordability solution. While HSAs may help some people, they do not work well for individuals with serious, lifelong conditions like cystic fibrosis. These plans often shift more costs to patients and are better suited for healthier, higher-income individuals — not families managing complex medical care year after year.

Through powerful personal stories, March on the Hill highlights how close progress in CF care depends on public policies. For people with CF, these advances only matter if patients can afford and access the treatments they need. 

Visit cff.org to share your own experiences dealing with insurance challenges, including Medicaid.