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.
Drug Pricing and Access CF Foundation Comments on Proposed Legislation to Create a Prescription Drug Affordability Board in Connecticut

In a letter to Connecticut's House Committee on Insurance and Real Estate, the Cystic Fibrosis Foundation provided feedback on HB 5054 which would establish an affordability board with the goal to improve access to and affordability of care for Connecticuters.
Drug Pricing and Access CF Foundation Comments on Proposed Legislation to Create a Prescription Drug Affordability Board in Nebraska

In a letter to Nebraska's Banking, Commerce and Insurance Committee, the Cystic Fibrosis Foundation provided feedback on LB 833 which would establish an affordability board with the goal to improve access to and affordability of care for Nebraskans.
Health Equity | Medicaid | Other Coalition Letter on Pending Rules to Advance Affordable, Accessible, and Adequate Healthcare Coverage

In a letter to the Department of Health and Human Services and the Domestic Policy Council, the Cystic Fibrosis Foundation joined the Partnership to Protect Coverage in urging for the prompt finalization of a number of pending rules that will greatly advance affordable, accessible, and adequate healthcare coverage.
Drug Pricing and Access CF Foundation Comments on Proposed Legislation to Create a Prescription Drug Affordability Board in Virginia

In a letter to the Virginia Senate Committee on Commerce and Labor, the Virginia House Committee on Labor and Commerce, and all members of the House of Delegates, the Cystic Fibrosis Foundation provided feedback on SB 274/HB 570 which would establish an affordability board with the goal to improve access to and affordability of care for Virginia
Health Equity | Medicaid Coalition Comments on CHIP Eligibility Expansion in Florida

In comments provided to the Florida Health Care Administration, the Cystic Fibrosis Foundation joined a coalition of patient groups to express support for expanding eligibility for the Children’s Health Insurance Program in Florida and urged legislators to remove premium requirements.
Private & Employer-Sponsored Insurance Coalition Comments on Department of Labor’s Proposal to Rescind the 2018 Association Health Plan Rule

In a letter to the Department of Labor, the Cystic Fibrosis Foundation joined the Partnership to Protect Coverage in encouraging the department to rescind the 2018 Association Health Plan rule due to a number of inappropriate provisions including that the rule was at odds with both the text and purpose of the Employee Retirement Income Security

Drug Pricing and Access CF Foundation Supports Florida’s Efforts to Ban Co-Pay Accumulators

In a letter to select Florida legislators, the Cystic Fibrosis Foundation expressed its support of SB 228/HB 363, which would ban co-pay accumulator programs in the state.
Appropriations | Health Equity | State Programs CF Foundation Urges New York to Use Unspent Funds to Continue Funding the Adult CF Assistance Program

In a letter to the President Pro Tempore and Majority Leader, the Cystic Fibrosis Foundation thanked the Senate for their continued support of the Adult CF Assistance Program and urged that they use unspent funds appropriated for people with CF in previous years to extend the program past March 31.
Drug Pricing and Access CF Foundation Supports Wisconsin’s Efforts to Ban Co-Pay Accumulators

In a letter to Wisconsin’s Assembly Committee on Health, Aging, and Long-Term Care, the Cystic Fibrosis Foundation expressed their support of AB 773 which would ban co-pay accumulators in the state and require covered benefits to be considered essential health benefits.
Health Equity | Medicaid CF Foundation Supports California’s Efforts to Implement Continuous Medicaid Coverage for Young Children

In a letter to the California Department of Health Care Services, the Cystic Fibrosis Foundation expressed support for California's proposal to provide multi-year continuous Medicaid coverage for children under age four, which would protect patients and families from gaps in care and promote health equity.
Drug Pricing and Access CF Foundation Supports South Carolina's Efforts to Ban Co-pay Accumulators, Maximizers, and Alternative Funding Programs

In a letter to the Insurance Subcommittee of South Carolina's House Labor, Commerce, and Industry Committee, the Foundation expressed its support for H.3618 which would require insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements, as well as ban maximizer programs and alternative programs
Drug Pricing and Access CF Foundation Supports Utah's Efforts to Ban Co-pay Accumulators

In a letter to all Utah legislators, the Cystic Fibrosis Foundation expressed its support for SB 152, which would require insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements.
Drug Pricing and Access CF Foundation Comments on Proposed Legislation to Give Vermont Green Mountain Care Board Authority to Cap Drug Prices

In a letter to Vermont's Senate Committee on Health and Welfare, the Cystic Fibrosis Foundation provided feedback on S 98 which would give the Green Mountain Care Board the ability to cap the purchase price of certain drugs with the goal to improve access to and affordability of care for Vermonters.
Prior Authorization CF Foundation Supports Ohio Efforts to Simplify Prior Authorization Requirements

In a letter to the Ohio House Insurance Committee, the Cystic Fibrosis Foundation expressed its support of HB 130 to streamline prior authorization requirements and urged the committee to lower the gold carding threshold for prescribers.  
Health Equity | Medicaid Coalition Provides Comments on Federal Medicaid Renewal Requirements

The Cystic Fibrosis Foundation joined the Partnership to Protect Coverage in urging the Centers for Medicare and Medicaid Coverage to strengthen critical policies that would improve the Medicaid redetermination process.
Health Equity | Newborn Screening CF Foundation Urges Changes to Nebraska Bill Making State Newborn Screening Optional

In a letter to the Nebraska Senate’s Committee on Health and Human Services, the CF Foundation urged legislators to amend LB 1060 to require the provision of materials to parents about the lifesaving benefits of newborn screening and the risks of opting out before parents decide to forgo this service.