As we start the new year, we want to celebrate the CF community’s strength and resolve in 2023 to advance our search for new therapies and protect access to care and treatments for those living with cystic fibrosis. Together, you held more than 260 volunteer meetings with members of Congress and sent more than 35,000 messages to state and federal legislators. Through virtual advocacy opportunities, nearly 60 people with cystic fibrosis advocated virtually for access issues deeply important to them and the community. And, in 2023, we welcomed more than 1,300 new advocates to our efforts. Some other causes for celebration include:  

In July, Melanie Lawrence, an adult with cystic fibrosis, testified before a Senate subcommittee regarding the impact of antimicrobial resistance on her life, spotlighting the urgent need for new and novel antibiotic options. In September, we led a lobby day with coalition partners in support of the PASTEUR Act — a bipartisan, bicameral proposal that has the potential to revitalize the development pipeline for novel antibiotics and antifungals — facilitating more than 150 meetings with Congressional offices.

The Foundation supported legislation and engaged the Biden administration to address issues related to accessing and affording specialty drugs, including accumulators, maximizers, and alternative funding programs. We advocated in support of the HELP Copays Act, which would ban accumulator programs in federally regulated health insurance plans and make it harder for plans to implement other coverage barriers. The Foundation also supported legislation banning copay accumulator programs in several states including Texas where CF community advocates were instrumental in advancing its passage. To date, 19 states, including Texas, New Mexico, D.C., and Puerto Rico have banned accumulator programs.

The CF Foundation was critical in advocating for and drafting patient-focused legislation that increases transparency and accountability for pharmacy benefit managers. The bill includes all the CF Foundation’s recommendations and is currently being considered in Congress.

In 2023, the Foundation engaged more than ten insurers about their problematic coverage policies, one of which removed coverage of all CFTR modulators on their 2024 marketplace and employer plans. Because of the community’s relentless advocacy, the insurer updated their formulary to include modulators.

The Foundation continues to address the administrative burden associated with prior authorizations. For example, because of the Foundation’s engagement with California’s Department of Health Care Services, California’s Medi-Cal Rx included all four modulators, as well as many other classes of drugs in the CF care regimen in a list of medications eligible for prior authorizations of up to five years. The Foundation also supported bills that would streamline prior authorization requirements in four states: North Carolina, Ohio, New Jersey, and Washington, D.C. Of these, DC’s bill was signed into law.

In 2023, Colorado became the first state to assess Trikafta through a prescription drug affordability board. Because of the community’s tireless advocacy efforts, the board decided that Trikafta is not unaffordable, preserving access to Trikafta for Coloradans. The Foundation will continue to engage state-level boards in their assessments this year.   

The Foundation’s advocacy efforts also extend to state and federal regulators to educate them on the needs of the CF community. We partner with national and state coalitions to strengthen our efforts as we push for broader access to adequate, affordable, and available health care and coverage.  

Want to hear more about our wins in 2023? Catch up with the Foundation by watching the 2024 National Annual Meeting recording. 

Thank you, from all of us at the Foundation, for continuing to share yourselves and your story in 2024.

Mary Dwight

Senior Vice President and Chief Policy & Advocacy Officer