Federal:
Additional Support for FY27 Funding for Federal Bleeding Disorders Programs
During Washington Days, NBDF asked Congressional offices to support funding for federal bleeding disorders programs for fiscal year (FY) 2027. In April, Senator Ed Markey (D-MA) along with eight other Senators submitted a Dear Colleague letter supporting funding for those essential programs. The Senate letter, together with the earlier House Dear Colleague letter, shows strong support for the federal bleeding disorders programs. Thank you again to all who advocated during Washington Days and throughout March and April to help advance this effort.
The Administration released the President’s proposed budget for FY27 in early April. The proposed budget maintains funding for the CDC bleeding disorders programs but is a little less clear on the proposed funding level for the HRSA hemophilia program. As in 2025, the President again seeks to move various HHS activities, including the CDC and HRSA bleeding disorders programs, to a proposed new “Administration for a Healthy America” (AHA). Congress has the final say, however – on funding levels as well as organizational structure – and has not indicated it plans to move forward with the proposed restructuring.
HHS Secretary Kennedy Testifies Before Congressional Committees; CDC Director Nominated
HHS Secretary Robert F. Kennedy, Jr., testified at seven Congressional hearings in April as Congress began its work on FY27 appropriations. The Secretary answered questions on a wide range of topics, from vaccine policy to Medicaid oversight to updated dietary guidelines. When asked about HHS staffing (specifically, reductions in force at CDC), Secretary Kennedy answered that CDC hiring and re-hiring would be a matter for the new CDC Director. A nominee for that CDC position – Dr. Erica Schwartz – was announced during the period of Secretary Kennedy’s appearances. Dr. Schwartz’s nomination will require approval by the Senate.
HELP Copays Continues to Gain Cosponsors
Asking Members of Congress to support the Help Ensure Lower Patient Copays (HELP Copays) Act was another focus of Washington Days. The legislation now has 22 bipartisan cosponsors in the Senate and 44 in the House. NBDF will continue to work with partners to help advance this critical legislation.
NBDF Comments in Support of PBM Transparency Rule
NBDF, together with the Hemophilia Alliance, commented in support of a proposed federal rule to enhance transparency and strengthen accountability in dealings between pharmacy benefit managers (PBMs) and the employer health plans that contract with those entities. The NBDF-Alliance letter noted that PBM practices too often create barriers to care for bleeding disorders patients. NBDF and the Alliance supported requiring clearer disclosure of PBM strategies such as copay accumulators, copay maximizers, and alternative funding programs.
State:
California: The Senate Health Committee passed SB 1119 unanimously April 23. The bill would ban the use of copay accumulator adjuster policies. The Assembly Health Committee passed A.B. 1887 unanimously April 22. The bill would prohibit health plans from imposing utilization management practices on drugs used to treat rare diseases.
Connecticut: NBDF and the New England Hemophilia Association (NEHA) provided written testimony on SB 3, the State’s omnibus health care bill. SB 3 provides increased funding for the state’s Medicaid Department to implement infrastructure for work requirements, providing alternative coverage and reinsurance programs, and implements a study on self-attestation to medical frailty. NBDF and NEHA urged the legislature to consider options leading to minimal coverage losses.
Louisiana: A PBM regulation bill, HB 1236, that includes language allowing the use of copay maximizer programs passed the House April 21 102-0. The bill has been referred to the Senate Committee on Insurance.
Massachusetts: While the House’s copay accumulator ban legislation (H. 1101) has crossed over, the Senate legislation (S. 698) was sent to study. NBDF and NEHA continue to work with Senate champions to assess options moving forward, while continuing to support House legislation.
Michigan: The Hemophilia Foundation of Michigan (HFM) held their Lansing Days advocacy day on March 23. HFM and NBDF advocated for level funding for the Children's Special Health Services (CSHS) program for bleeding disorders patients, copay accumulator reform, and medical debt relief.
Nebraska: On April 30, NBDF submitted comments to the state Department of Health and Human Services on a list of “serious or complex medical conditions” that would exempt a patient from Medicaid work requirements asking the state to include diagnostic codes for all bleeding disorders.
Vermont: NBDF and NEHA provided written testimony on H. 585, legislation to expand “junk insurance” such as Association Health Plans (AHP’s) and Short-Term Limited Duration (STLD) plans. As a result of testimony, the bill was amended to provide guardrails to STLD and AHP’s, including coverage requirements and a complaints process to the Vermont Insurance Commissioner.