Cystic fibrosis has drastically changed in a single generation. Once seen as a pediatric disease, people with CF are now living into adulthood thanks to groundbreaking treatments and highly specialized care. However, this system of care and the improvements in length and quality of life for those with CF can only be realized if patients have access to essential specialized care and services.

Programs such as the marketplace, established under the Affordable Care Act, and Medicaid are critical lifelines to care for many people with CF who need access to consistent care and specialized therapies. For example, Medicaid provides coverage to half of children and one-third of adults living with CF. For someone with a progressive disease like CF, gaps in coverage can result in delaying or forgoing care, which can lead to the risk of declining health, irreversible lung damage, and costly hospitalizations.

H.R. 1 and the Senate's proposed reconciliation bill language both include significant cuts to Medicaid and provisions that will destabilize the marketplace, which the Congressional Budget Office estimates will result in 16 million people losing their health coverage. These cuts include:

• Instituting work reporting requirements, which will lead to widespread coverage losses due to onerous paperwork and other administrative burdens, like regular recertifications. The ability for people with CF to work can vary over time with changes in their health. Although some states may choose to exempt people from work requirements — like those with chronic illnesses such as CF and their caregivers — these exemptions may not happen automatically and would require complex paperwork and biannual certifications for certain populations. Individuals risk losing coverage if they are unable to meet the requirement, encounter administrative errors, or fail to complete their application on time — something that’s played out in Georgia and Arkansas.
• Requiring states to charge some Medicaid enrollees a $35 copay per service, which would add to the significant cost burden people with CF already experience. According to a 2024 study conducted by the Cystic Fibrosis Foundation and Dartmouth College, more than one-third of people living with CF delayed or went without at least one aspect of their CF care in the last year due to cost concerns. As part of the CF care regimen, patients have quarterly visits with their care team — which may include appointments with physicians, nurses, respiratory therapists, dieticians, social workers, physical therapists, mental health providers, and genetic counselors. If a state imposes a $35 copayment per service per visit, it may force patients to skip appointments, seriously jeopardizing their health and leading to costly hospitalizations and fatal lung infections.
• Restricting provider taxes, which will hinder states’ ability to respond to unforeseen circumstances or rising costs. This may force states to deeply cut Medicaid eligibility and services — resulting in people with CF losing coverage.
• Failing to extend enhanced premium tax credits for marketplace plans and including several onerous marketplace changes. These changes will make it harder to enroll, further putting affordable health coverage out of reach for people with CF.

For people with cystic fibrosis, health coverage is not optional. It's a lifeline.