Dear Advocate,

This year, the CF community has served as a powerful force in protecting and strengthening access to treatments and care through state and local advocacy efforts. Since January, community members have sent more than 35,000 messages to members of Congress and state legislators, met with more than 200 congressional offices in Washington, D.C. and at home, and continued to build their networks locally to expand and deepen advocacy efforts. Below are some of our most recent wins.

Recently, Melanie Lawrence, an adult with cystic fibrosis, testified before a Senate subcommittee regarding the impact of antimicrobial resistance (AMR). CF advocates have been sharing their stories of resistant infection with lawmakers to urge action, and in result, there have been numerous mentions of the impact of AMR to people living with CF by members of Congress in recent committee hearings.

Recently, the New York State Legislature unanimously passed a bill to reestablish the Adult Cystic Fibrosis Assistance Program, a significant step forward in a three-year campaign to restore and fund the vital program. This win is a result of the persistence of dedicated advocates who shared how important this program is in accessing much-needed medications to live with their disease. Advocating for state health care programs serving people living with CF is a cornerstone of the Foundation’s advocacy work and recently we helped to secure full or increased funding for programs in Michigan, Ohio, Pennsylvania, and Wisconsin.

As we continue to wait for Congressional action on the HELP Copays Act, which gained a lot of sponsors after this year’s March on the Hill, several states have passed bills that ban copay accumulator programs. Recently, the Governor of Texas signed a bill prohibiting copay accumulators programs, requiring insurers to count the full value of copay assistance programs and help lower patients’ out-of-pocket costs. The CF community was a significant part of this win, making phone calls and sending emails to policymakers throughout the legislative process. To date, 19 states have banned accumulator programs.

Last month, President Biden signed a bill to raise the debt limit. During the negotiations, Congress considered a deal to implement work requirements as a condition of eligibility for critical programs like Medicaid. Our advocates urged members of Congress to oppose any barriers that might prevent people with CF from accessing the specialized, high-quality care they require. While the final package increased work requirements for other programs like the Supplemental Nutrition Assistance Program, work requirements for Medicaid were not included in the final bill.

Advocate, thank you for your continued support and advocacy efforts. Because of you and your commitment, we will continue to ensure all people with CF have access to the treatments and care they need to live long and healthy lives.