On February 20, more than 150 advocates from across the country, including nearly 25 adults with cystic fibrosis, met with members of Congress and their staff during the Foundation’s 18th annual March on the Hill.

This year, volunteers urged Congress to protect and prioritize life-changing scientific advancements and access to care as it considers its health care agenda for 2025. Specifically, advocates implored Congress to protect the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), and Medicaid for people with CF.

"People with CF are living longer, fuller lives today thanks to the groundbreaking treatments and specialized care made possible by advancements in research and innovation. But this progress is at risk,” said Mary Dwight, senior vice president and chief policy and advocacy of the Cystic Fibrosis Foundation. “Our CF community — small but mighty — rallied to show Congress that fully supporting Medicaid and funding the NIH and FDA isn't just an investment in CF; it's a commitment to the future of all those battling chronic diseases. We need bold action now to ensure affordable access to treatments today and options for therapies tomorrow."

The NIH and FDA have played a vital role in the story of cystic fibrosis, from the discovery of the CF gene to bringing new CF therapies into the hands of patients safely and effectively. The NIH and FDA will remain essential as we work to ensure all people with CF have a treatment that addresses their underlying mutation — and someday, a cure. Through public-private partnerships with the FDA and the NIH, progress in CF has been swift. Robust funding and support are critical to continue that progress.

Highly specialized care is also crucial for living with CF. The disease requires a demanding and complex regimen that can come with high costs private insurance alone may not be able to cover. Medicaid fills gaps left by private insurance plans, helping half of children and one-third of adults with CF afford treatments, medication, and specialized care. Advocates asked Congress to oppose funding cuts that would restrict states’ Medicaid programs and reject barriers to care — such as work reporting requirements — that may jeopardize coverage.

More than 3,000 community members from 49 states and the District of Columbia participated in the Foundation’s Online Day of Action. Advocates sent more than 9,300 messages to their lawmakers, amplifying the community’s collective voice on the Hill.

The event also marked the final March on the Hill for the Foundation’s National Advocacy Committee co-chairs, Jeremy and Rachel Olimb and Marissa Benchea, who began their term in 2022. Members of the community and CF Foundation staff extended their thanks during the event. The Foundation will announce the new advocacy co-chairs later next month.

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