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.
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
In the statement, the Partnership for Protecting Coverage applauded efforts by the Department of Labor to reverse previous decisions to eliminate or substantially alter standards and regulatory structures of association health plans, including requiring these plans to cover essential health benefits.
In the letter to the Federal Trade Commission, the Cystic Fibrosis Foundation asks the commissioner to take appropriate enforcement action against alternative funding programs, emphasizing the harmful consequences of these programs on people with CF.
In comments provided to the U.S. Departments of Health and Human Services, Labor, and Treasury, the Partnership for Protecting Coverage supported the Mental Health Parity and Addiction Equity Act but asked that the departments remove proposed exceptions which would undermine important progress.
Partnership to Protect Coverage provides comments to the U.S. Department of Health and Human Services, the Treasury Department, and the Department of Labor on a proposed rule concerning short-term, limited-duration insurance plans.
Ad hoc patient advocacy coalition letter to the Department of Labor expressing concerns about Alternative Funding Plans and providing supporting materials after a discussion with the department in June 2023.