By educating elected officials and other government decision-makers on the needs of the cystic fibrosis community, the Cystic Fibrosis Foundation works to shape public policy to help our efforts to cure CF and provide all people with CF the opportunity to live full, healthy lives. Below find a listing of our state and federal statements, letters, and regulatory comments.
Statements, letters, and regulatory comments issued before July 2023 can be found in our archive.
The proposal would implement cost-sharing reduction subsidies for consumers on the state’s insurance marketplace with incomes up to 400% of the federal poverty level and for consumers in all metal tiers who receive diabetes-related services.
In the statement, the CF Foundation joined peer patient groups in applauding the decision to preserve access to no-cost preventive services for 150 million patients.
In a letter, the CF Foundation urged Pennsylvania legislators to support SB 739, which would require coverage of telehealth services, including audio-only telehealth and remote patient monitoring.
The bill would take steps to form a strategy for collaborating with foreign countries, multilateral organizations, and other entities to facilitate the development of products to combat antimicrobial-resistant pathogens.
In a letter to the D.C. Health Benefit Exchange Authority, the CF Foundation urged the state to notify plans of the new ban on accumulator programs and ensure that all plans on the state's health insurance marketplace during the 2024 open enrollment period do not include accumulator programs.
The Cystic Fibrosis Foundation joined 24 patient and provider organizations in a statement applauding the U.S. Supreme Court's decision in Hippocratic Medicine et al v FDA et al, which preserves the FDA's role and expertise in determining the safety and efficacy of medications and conditions of use.
The bipartisan, bicameral legislation will improve access to care in the Medicare Advantage program by increasing transparency and streamlining the prior authorization process for people with cystic fibrosis and clinicians.
The bipartisan, bicameral legislation will improve access to care in the Medicare Advantage program by increasing transparency and streamlining the prior authorization process for people with cystic fibrosis and clinicians.
In a letter to the Colorado Department Division of Insurance, the Cystic Fibrosis Foundation urges the state to notify plans of the new ban on accumulator programs and ensure that all plans on the state's health insurance marketplace during the 2024 open enrollment period do not include accumulator programs.
In a letter, the Cystic Fibrosis Foundation requested that the bill be amended to require all third-party financial assistance to apply to patients’ cost-sharing obligations and provide a pathway to apply for financial assistance for drugs with generic or biologic equivalents.
The CF Foundation joined 30 peer organizations in endorsing S. 3821, the Supplemental Oxygen Access Reform (SOAR) Act, which will ensure Medicare enrollees individuals have appropriate access to required supplemental oxygen.
The CF Foundation joined 30 peer organizations endorsing H.R. 7829, the Supplemental Oxygen Access Reform (SOAR) Act, which will ensure Medicare enrollees individuals have appropriate access to required supplemental oxygen.
In a letter to the Oregon Department of Consumer and Business Services, the Cystic Fibrosis Foundation urges the state to notify plans of the new ban on accumulator programs and ensure that all plans on the state's health insurance marketplace during the 2024 open enrollment period do not include accumulator programs.
In a letter to the Texas Health and Human Services Commission, the Cystic Fibrosis Foundation urges the commission to request full funding for Medicaid and the Children with Special Health Care Needs Program in the FY 2026-2027 legislation appropriations request.
In a letter to the North Carolina House of Representatives, the Cystic Fibrosis Foundation expressed its concern with HB 237, citing potential unintended consequences that threaten the health and well-being of vulnerable populations, like those living with cystic fibrosis.
In a letter to the U.S. House of Representatives Energy & Commerce Committee, the Cystic Fibrosis Foundation encouraged the committee to consider the PASTEUR Act, the RARE Act, and the Telehealth Modernization Act to help address orphan drug exclusivity, telehealth, and antimicrobial resistance.