Nearly 350 Advocates Urge Congressional Action During 17th Annual March on the Hill

This year’s program marked the largest in-person advocacy event in the Foundation’s history.

March 19, 2024 | 3 min read

Last week, nearly 350 advocates representing 45 states participated in the Foundation’s 17th annual March on the Hill, meeting with 214 offices. This year’s program marked the largest in-person advocacy event in the Foundation’s history.

While on the Hill, advocates urged members of Congress to pass two pieces of bipartisan legislation of vital importance to the CF community: the Pioneering Antimicrobial Subscriptions to End Upsurging Resistance (PASTEUR) Act and the Help Ensure Lower Patient (HELP) Copays Act.

Led by National Volunteer Advocacy Committee co-chairs Jeremy and Rachel Olimb and Marissa Benchea, advocates detailed the urgent need for action around the two bills before the end of the 118th Congress. Additionally, more than 2,600 advocates from across the country amplified the message of advocates on the Hill by participating in the Foundation’s Online Day of Action, sending more than 8,200 messages to members of Congress, strengthening the already powerful voice of the CF community.

“March on the Hill has a long history of bringing thousands of volunteers together to advocate for change and amplify the voices of those living with cystic fibrosis by sharing personal stories” said Mary Dwight, senior vice president and chief policy and advocacy officer of the Cystic Fibrosis Foundation. “With nearly 350 advocates, half of whom participated for the first time this year, we demonstrated just how impactful this community is in shaping policy, not just for people with CF, but all of those living with a chronic condition in the U.S.”

The PASTEUR Act is a crucial piece of legislation in the fight against antimicrobial resistance. If passed, the bill would stabilize the perpetually broken antibiotics marketplace by creating a sustainable payment structure for antibiotics after they are on the market. This structure, which does not exist in the United States but is beginning to take hold in European countries, would promote appropriate use of existing antibiotics and spur the development of new antibiotics as investors are more incentivized to participate in the research and development process. A more effective antibiotics marketplace is critical as people with CF often battle difficult-to-treat infections for which existing antibiotics are not effective.

Introduced in 2023, the HELP Copays Act would help reduce the financial burden for people with cystic fibrosis by requiring health insurance plans to count the value of a copay assistance towards a patient’s  deductible and out-of-pocket maximum. The bill would also ensure that any item or service — like modulators — covered by a health plan is considered part of the patient’s essential health benefits.

KC White, chair of the Cystic Fibrosis Foundation Board of Trustees, left, and Michael Boyle, MD, president and CEO of the Cystic Fibrosis Foundation, right, presenting Sen. Todd Young (R-IN), center, with the Dream Big Award.
KC White, chair of the Cystic Fibrosis Foundation Board of Trustees, left, and Michael Boyle, MD, president and CEO of the Cystic Fibrosis Foundation, right, presents Sen. Todd Young (R-IN), center, with the Dream Big Award.

During the event, Senators Michael Bennet (D-CO) and Todd Young (R-IN), lead sponsors of the PASTEUR Act, received the Foundation’s 2024 Dream Big Award in recognition of their leadership and commitment to creating policy solutions that would have a substantial impact on the lives of people living with cystic fibrosis.

Sen. Michael Bennet (D-CO) holding an award at a conference table while those seated at the table clap.
KC White, chair of the Cystic Fibrosis Foundation Board of Trustees, right, presents Sen. Michael Bennet (D-CO) center, with the Dream Big Award.

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