Statements, Letters, and Regulatory Comments

Statements, Letters, and Regulatory Comments

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.

Medicare & SSDI | Prior Authorization CF Foundation Expresses Support to the House for Improving Seniors’ Timely Access to Care Act

In a letter to House bill sponsors, the Cystic Fibrosis Foundation signaled its support for the Improving Seniors’ Timely Access to Care Act, bipartisan, bicameral legislation that will improve access to care in the Medicare Advantage program by increasing transparency and streamlining the prior authorization process for people with cystic fibro

June 5, 2024
Medicare & SSDI | Prior Authorization CF Foundation Expresses Support to the Senate for Improving Seniors’ Timely Access to Care Act

In a letter to Senate bill sponsors, the Cystic Fibrosis Foundation signaled its support for the Improving Seniors’ Timely Access to Care Act, bipartisan, bicameral legislation which will improve access to care in the Medicare Advantage program by increasing transparency and streamlining the prior authorization process for people with cystic fib

June 5, 2024
Drug Pricing and Access CF Foundation Urges Full Implementation of Co-Pay Accumulator Ban in Colorado

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.

May 31, 2024
Drug Pricing and Access CF Foundation Comments on New Hampshire’s Efforts to Ban Co-pay Accumulators

In a letter to members of the New Hampshire Senate and House Committee of Conference, the Cystic Fibrosis Foundation commented on SB-354, requesting to amend the bill to require all third-party financial assistance to apply to patients’ cost-sharing obligations and provide a pathway to apply financial assistance for drugs with generic or biologi

May 31, 2024
Drug Pricing and Access CF Foundation Urges Full Implementation of Co-Pay Accumulator Ban in Oregon

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.

May 20, 2024
Health Equity | Medicaid | State Programs CF Foundation Urges Texas to Fully Fund Medicaid and the Children with Special Health Care Needs Program

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.

May 20, 2024
Other CF Foundation Opposes North Carolina Proposal to Ban Masks in Public Settings

In a letter to the North Carolina House of Representatives, the CF Foundation expressed its concern of HB 237, which would prohibit people from wearing masks in public settings for health and safety reasons, citing potential unintended consequences that threaten the health and well-being of vulnerable populations, like those living with cystic f

May 20, 2024
Antimicrobial Resistance | Drug Development/Clinical Trials | Telehealth CF Foundation Submits Letter for the Record on Legislative Proposals to Strengthen America’s Healthcare System

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.

May 16, 2024
Drug Pricing and Access CF Foundation Comments on New Hampshire’s Efforts to Ban Co-Pay Accumulators

In a letter to members of the New Hampshire House Commerce and Consumer Affairs Committee, the Cystic Fibrosis Foundation commented on SB-354, requesting to amend the bill to require all third-party financial assistance to apply to patients’ cost-sharing obligations and provide a pathway to apply financial assistance for drugs with generic or bi

May 14, 2024
Antimicrobial Resistance Coalition Urges U.S. Senate to Significantly Increase Federal Funding for Antimicrobial Resistance Programs

In a letter to the Senate Labor-HHS-Education, Agriculture-Rural Development-FDA, and State and Foreign Operations Appropriations Subcommittee, the Cystic Fibrosis Foundation joined a coalition in calling for a One Health approach that encompasses human, animal, and environmental health with increased funding for surveillance, prevention,

May 14, 2024
Appropriations | Health Equity Coalition Requests Full Funding for the Public Health Workforce Loan Repayment Program

In a letter to the Senate Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies, the Cystic Fibrosis Foundation joined an ad hoc coalition requesting the subcommittee fully fund the Public Health Workforce Loan Repayment Program at its $100 million authorization level and provide $50 million

May 14, 2024
Health Equity | Medicaid Coalition Supports Colorado’s Proposal to Implement Changes to its Medicaid Program

In a letter to the U.S. Department of Health and Human Services, the Cystic Fibrosis Foundation joined a coalition in expressing support for Colorado’s proposal to provide multi-year continuous Medicaid coverage for children under age six, which would protect patients and families from gaps in care and promote health equity.

May 13, 2024
Health Equity | Medicaid | State Programs CF Foundation Requests Meeting on California’s Medicaid Program With California Department of Health Care Services

In a letter to the California Department of Health Care Services, the Cystic Fibrosis Foundation outlines significant network limitations for adults with CF enrolled in Medicaid managed care plans in the greater Los Angeles area and requests a meeting to discuss the issues and find a path forward to ensure all people with CF have access to the c

May 13, 2024
Drug Pricing and Access CF Foundation Comments on Proposed Legislation to Create a Prescription Drug Affordability Board in Rhode Island

In a letter to Rhode Island legislators, the Cystic Fibrosis Foundation provided feedback on H8220 and S2719 which would establish an affordability board in the state to ensure that the affordability board centers the needs of people living with a disease, including CF, at the center of the discussion when selecting

May 8, 2024
Health Equity | Drug Development/Clinical Trials CF Foundation Comments on Collection of Race and Ethnicity Data in Clinical Trials

In a letter to the U.S. Food and Drug Administration, the Cystic Fibrosis Foundation noted its support of the Agency’s draft guidance on collecting race and ethnicity data in clinical trials and studies but provided feedback on opportunities to improve the proposed recommendations.

April 29, 2024
Health Equity | Medicaid CF Foundation Supports Medicaid Eligibility Expansion in Mississippi

In a letter to Mississippi legislators, the Cystic Fibrosis Foundation expressed support for HB 1725 which, if passed, would expand eligibility for Medicaid. The letter also urged legislators to ensure that the bill expands eligibility to adults with incomes up to 138% of the federal poverty line.

April 25, 2024