As your constituent, I am urging you to stand up for the health and wellbeing of the more than 70 million Americans who rely on Medicaid —and specifically millions of people with rare diseases—by opposing the "One Big Beautiful Bill" (passed by the House - H.R. 1).  
 
Members of the cystic fibrosis (CF) community - and in particular children with CF - are directly impacted by this legislation. CF is a genetic, progressive, and very complex life-threatening disease. For many in the CF community, access to Medicaid is a vital lifeline connecting them to vital services and treatments. More than half of children and one-third of adults living with CF utilize Medicaid for their health insurance. Cuts to Medicaid would result in devastating health consequences for people with CF and other rare diseases, while placing even greater strain on the broader healthcare system. For many, this is a matter of life and death.

This bill very narrowly passed the House on May 22, 2025. It threatens Medicaid access by adding red tape, raising costs for patients, and cutting state funding. The bill’s proposed work requirements—80 hours per month for adults without disabilities or children—would create major barriers, especially for those with chronic conditions like CF. While individuals with CF may qualify for exemptions, these are not automatic and would require complex paperwork and frequent recertification, even for lifelong illnesses. The bill also doubles eligibility verifications and imposes new copay requirements, further straining both patients and state systems. A 2024 CF Foundation/Dartmouth study found that over one-third of people with CF already delay or skip care due to cost. 

This is not a partisan issue. The CF and rare disease communities are counting on you to protect access to life-saving care by opposing Medicaid cuts. We appreciate your continued leadership on this urgent issue.