Last week, more than 175 advocates representing 43 states met with their members of Congress to advocate for the cystic fibrosis community during the Foundation’s 16th annual March on the Hill. This year also marks the first time March on the Hill was held as a hybrid event, allowing nearly 30 people with cystic fibrosis to participate online.
This year, advocates championed two bipartisan pieces of legislation: the Help Ensure Lower Patient (HELP) Copays Act and the Pioneering Antimicrobial Subscriptions to End Upsurging Resistance (PASTEUR) Act.
Introduced in February, the HELP Copays Act would help to lower out-of-pocket costs by requiring individual, small group, and employer health insurance plays to count the value of drug manufacturer and nonprofit copay assistance toward an enrollee’s annual deductible and out-of-pocket maximums. The bill also would ensure that any item or service covered by the health plan is considered part of their essential health benefits package and thus requiring its cost-sharing be counted toward patients’ annual limits. This will help to protect patients from some plans’ current practices that exclude CF specialty medications. Advocates discussed with members of Congress and their staff about the substantial cost required to keep up with the care and treatments necessary for life with cystic fibrosis and shared stories of the financial hardships they or their loved ones experience in trying to access their care.
The PASTEUR Act addresses the need for new, effective antibiotics for difficult-to-treat infections by incentivizing the development of new antibiotics and promoting appropriate use of existing ones. Volunteer advocates shared with Hill offices the human impact and potential fallout of not having enough novel antibiotics available to address infections that continue to arise for people with CF and the general population.
“March on the Hill provides the opportunity for members of the CF community to share their unique stories and experiences about challenges around access and affordability of essential CF care and fear of not having enough treatments to tackle difficult-to-treat infections that have the potential to jeopardize progress,” said Mary Dwight, chief policy and advocacy officer at the Cystic Fibrosis Foundation. “This is how change happens and how Congress is motivated to act.”
Additionally, nearly 4,500 community members from every state participated in the Foundation’s Online Day of Action. Advocates nationwide sent more than 14,000 messages to their lawmakers supporting the PASTEUR Act and HELP Copays Ac, amplifying the community’s collective voice on the Hill.
Reps. Mark Amodei (NV-02) and Jim McGovern (MA-02), co-chairs of the CF Congressional Caucus, gave remarks on Thursday morning ahead of the event, expressing the importance of sharing personal stories during meetings with members of Congress.
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