Dear Representative Dingell and Pallone,
On behalf of the Cystic Fibrosis Foundation, we are pleased to endorse the Stabilize Medicaid and CHIP Coverage Act (S. 3138/ H.R. 5434). This legislation will extend the bipartisan Consolidated Appropriations Act of 2023 and take steps to provide reliable access to care by guaranteeing 12-month continuous coverage to all adult Medicaid beneficiaries. This policy will help ensure patients maintain coverage by significantly reducing turnover within the enrollment and re-enrollment of individuals on and off Medicaid and Children’s Health Insurance Program (CHIP).
There are close to 40,000 children and adults living with cystic fibrosis in the United States, and CF can affect people of every racial and ethnic group. Cystic fibrosis is a life-threatening genetic disease that causes the body to produce thick, sticky mucus that clogs the lungs and digestive system, which can lead to life-threatening infections. Cystic fibrosis is both serious and progressive; lung damage caused by infection is irreversible and can have a lasting impact on length and quality of life. As a complex, multi-system condition, CF requires continuous targeted, specialized treatment and medications. While advances in CF care are helping people live longer, healthier lives, we also know that churn of coverage due to changes in income eligibility pose a barrier to effective coordination of care and preventative health care. Many people with CF depend on multiple forms of insurance, and nearly three-quarters rely on some form of financial assistance. Still, according to a survey conducted by the George Washington University of more than 1,800 people living with CF and their families, nearly half of respondents reported delaying or forgoing care due to cost concerns. This can put patients at increased risk of lung exacerbations, irreversible lung damage, and costly hospitalizations.
Changes in income eligibility are often temporary, and a large share of individuals who lose coverage re-enroll within a matter of weeks or months. Research has shown that individuals with disruptions in coverage during a year are more likely to delay care, receive less preventive care, refill prescriptions less often, and have more emergency department visits. Gaps in Medicaid coverage have also been shown to increase hospitalizations and negative health outcomes for ambulatory care-sensitive conditions like respiratory diseases. Due to the progressive nature of the disease, consistent care and access to specialized therapies are necessary for people with CF. Gaps in Medicaid and CHIP coverage may put people with CF at risk of declining health by forcing them to forgo daily therapies due to cost, placing an additional financial strain on patients who may already be struggling to afford their care.
Thank you for your leadership working towards 12-month continuous coverage for individuals under the Medicaid and CHIP program. The CF Foundation appreciates your attention to this important issue for the CF community and we stand ready to work with you to ensure this bipartisan, bicameral legislation becomes law.