Dear Chairman Crowe and members of the Senate Health and Welfare Committee:
On behalf of the more than 850 people living with cystic fibrosis in Tennessee, we urge you to support SB 851, which expands Medicaid eligibility to childless adults with incomes up to 138% of the federal poverty level (FPL). The Cystic Fibrosis Foundation is committed to ensuring that Tennessee’s Medicaid program provides critical healthcare coverage to all who can benefit. Expanding Medicaid is a critical step for improving health outcomes and ensuring that Tennesseans, including those living with CF, have the coverage they need to lead long, healthy lives.
About Cystic Fibrosis and the Cystic Fibrosis Foundation
Cystic fibrosis is a progressive, genetic disease that affects the lungs, pancreas, and other organs. There are close to 40,000 children and adults living with cystic fibrosis in the United States, which can affect people of all racial and ethnic groups. CF causes the body to produce thick, sticky mucus that clogs the lungs and digestive system, which can lead to life-threatening infections. As a complex, multi-system condition, CF requires targeted, specialized treatment and medications. Medicaid is a crucial source of coverage for people living with CF; more than half of all children and one-fourth of all adults living with CF in the state rely on the program for some or all of their health care coverage.
As the world’s leader in the search for a cure for CF and an organization dedicated to ensuring access to high-quality, specialized CF care, the Cystic Fibrosis Foundation accredits more than 130 care centers nationally — including two in Tennessee — that provide multidisciplinary, specialized care in accordance with clinical practice guidelines. As experts in CF care, the CF Foundation and our care centers understand the critical role of adequate, affordable health coverage, including through programs like Medicaid.
Medicaid Expansion Supports Access to Affordable, Specialized Care
While significant advances in care are helping people living with cystic fibrosis live longer, healthier lives, the cost of care is a barrier to access for many people living with the disease. Many people living with CF depend on multiple forms of insurance, and nearly three-quarters rely on some form of third-party financial assistance. Still, according to a 2024 study conducted by the Cystic Fibrosis Foundation and Dartmouth College, over a third of people living with CF delayed or went without at least one aspect of their CF care in the last year — including skipping medication doses, taking less medicine than prescribed, delaying filling a prescription, or skipping a treatment altogether — due to cost concerns.
Medicaid plays an important role in helping patients afford the specialized care they need to stay healthy. For many people living with cystic fibrosis, it fills coverage gaps left by private insurance that would otherwise leave patients with unmanageable out-of-pocket costs. Adequate coverage is not a luxury, but a necessity for people living with CF. Consistent care and access to specialized therapies are essential for people living with cystic fibrosis, and interruptions in coverage — even for as little as one month — can lead to lapses in care, irreversible lung damage, and costly hospitalizations — compromising the health and well-being of those with the disease.
Tennessee is one of only 10 states that have not adopted full Medicaid expansion. By expanding Medicaid eligibility to childless adults with incomes up to 138% of the FPL, the state could extend coverage to an estimated 194,000 uninsured adults. In doing so, the state could also draw down much-needed federal dollars and strengthen a vital safety net for Tennessee’s most vulnerable residents, including those with cystic fibrosis.
The Cystic Fibrosis Foundation urges you to support SB 851. We appreciate your attention to this important issue.