Federal Updates:
2025 Washington Days
Last week, over 400 advocates from the bleeding disorders community took to Capitol Hill to talk with their legislators and their staff about issues important to the bleeding disorders community. Advocates conducted a total of 248 Congressional meetings, almost evenly split between Democratic and Republican offices, representing 49 states as well as Puerto Rico. Washington Days is one of our favorites events every year and it would not be successful without all of you – thank you for your advocacy!
Senate Reintroduces HELP Copays Act
Just in time for Washington Days, Senators Tim Kaine (D-VA) and Roger Marshall (R-KS) reintroduced the Help Ensure Lower Patient (HELP) Copays Act (S. 864), critical legislation which would help to end copay accumulator adjustor programs and copay maximizer programs. Senators Ed Markey (D-MA), Lisa Murkowski (R-AK), Jeff Merkley (D-OR), and Thom Tillis (R-NC) joined as original cosponsors.
Representatives Buddy Carter (R-GA-01) and Nanette Barragan (D-CA-44), the leads in the House of Representatives last Congress, are working towards reintroduction.
Executive Branch
The dizzying pace of executive actions from the Trump Administration continued through February. The Administration continues to push through layoffs, program cuts, and Executive Orders changing how federal agencies operate – though lawsuits (now numbering more than 100) continue to pause or delay the impact of some of these policies. Deep cuts to ACA Navigator program (community-based organizations that educate and help enroll people in Marketplace insurance) were included in these changes.
The Senate confirmed Robert F. Kennedy Jr.’s nomination to head up the Department of Health and Human Services (HHS) on February 13th. Shortly after his confirmation, Secretary Kennedy posted a document proposing to strip public participation from much of HHS’s regulatory activities. Normally, before adopting a new rule or regulation, agencies must give the public an opportunity to submit written comments in support or in opposition to the proposal. The new policy says that HHS will not seek public input when the agency is making decisions about “agency management or personnel,” or related to public property, loans and grants, benefits, or contracts. When HHS considered a similar change forty years ago, that policy drew widespread opposition due to its implications for Medicaid and Medicare.
Congress
Current funding for the US government is set to expire on March 14th. The House proposed a short-term funding bill, FY25 continuing resolution (CR), to fund the government at FY24 levels through September 30, 2025. The CR’s prospects are complicated by bigger-picture questions about the Trump Administration (e.g., the grant freeze, firing of probationary employees, efforts to shut down agencies like USAID and CFPB, etc.). The House is set to vote on the CR on March 11th; when the bill goes to the Senate, it will require 60 votes, meaning it will need yes votes from at least 7 Democrats.
Meanwhile, Congress continues to work on a budget resolution for the next fiscal year. The House passed a budget resolution on February 25th calling for $880 billion in cuts that could only come from Medicaid and Medicare (and President Trump has repeatedly said that Medicare cuts are off the table).
The House budget resolution is only one step in a multi-step process. As passed, the House resolution does not align with the Senate’s version, so the two bills will have to be reconciled. Once the chambers reach agreement, the various committees will tackle the task of marking up and passing legislation to hit their numbers. Since Medicaid falls under the jurisdiction of the House Energy & Commerce Committee, that is a primary focus for current advocacy efforts.
State Updates:
Arizona: HB 2380, a bill creating a Rare Disease Advisory Council, passed the House 46-12 on Feb. 26.
Iowa: Bleeding Disorders of the Heartland hosted its Advocacy Day at the state capitol Feb. 5, the same day as House and Senate subcommittees were holding hearings on companion PBM reform bills HSB 99 and SSB 1074 that include accumulator adjuster bans. BDotH and NBDF testified at both hearings in support of the measures.
On Feb. 11, the House Committee on Commerce unanimously approved HSB 99. The Senate Health and Human Services Committee approved SSB 1074 on Feb. 19th. SSB 1074 is now renamed SF 383.
Indiana: NBDF submitted comments expressing concern and opposition over the State’s Medicaid 1115 waiver, which would implement additional work requirements for individuals under the age of fifty-five.
Maryland: NBDF signed onto patient advocacy group comments expressing concern over SB 357/HB 424, the State’s legislation to authorize the Prescription Drug Affordability Board (PDAB) the establish upper payment limits.
Montana: Rep. Tuss has introduced L.C. 4182 to create a Rare Disease Advisory Council in the state.
Nebraska: The Senate Banking, Commerce, and Insurance Committee will hold a hearing on Sen. Wordekemper’s copay accumulator adjuster (LB 158) bill March 3rd. NBDF will be testifying at the hearing and NBDF’s Nebraska Chapter will be holding its Advocacy Day in Lincoln the same day.
New Hampshire: SB-17, New Hampshire’s copay accumulator adjuster legislation, passed the Senate Health and Human Services committee unanimously and passed the Senate on Thursday, March 6th. It now goes to the House for consideration.
North Dakota: On Feb. 18th, the House Insurance, Business, and Labor Committee approved an amended version of HB 1216 that included language authorizing the use of copay maximizers. On the House floor the next day the amendment was stripped from the bill and the House passed the original version of the bill 69-24.
South Carolina: On February 26th, NBDF joined the Bleeding Disorders Association of South Carolina (BDASC) in Columbia for their annual Hill Day. BDASC spent the day educating members on the importance of copayment assistance and advocating for the State’s copay accumulator ban legislation, H. 3934 and S. 330. BDASC is leading the effort on this legislation.
Virginia: The Virginia Hemophilia Foundation (VHF) and the Hemophilia Association of the Capital Area (HACA) submitted comments to legislators and Governor Youngkin regarding concerns over the Commonwealth’s PDAB legislation.
Additionally, VHF and HACA remain in steadfast support of ensuring that Virginia does not lose Medicaid expansion considering potential federal cuts to Medicaid. VHF and HACA have engaged legislators working on this issue for Virginia to continue the expansion of Medicaid.
