Federal:
Strong Support for FY27 Funding for Federal Bleeding Disorders Programs
During Washington Days, advocates asked Congressional offices to support funding for federal bleeding disorders programs for fiscal year (FY) 2027 by signing onto a Dear Colleague letter. The letter, which was led by Representatives Johnson (D-TX), Kennedy (D-NY) and Wilson (R-SC), closed last week with 41 bipartisan signers. Thank you to all who advocated during Washington Days and in the weeks following to help support this effort! NBDF will now focus on the Senate effort – the Senate deadline is later than the House. Sen. Markey (D-MA) will be leading a Dear Colleague letter to support funding for the federal bleeding disorders programs for FY27.
The President’s proposed budget for FY27 is expected later this week.
HELP Copays Continues to Gain Cosponsors
Asking Members of Congress to support the Help Ensure Lower Patient Copays (HELP Copays) Act was another ask during Washington Days. Since Washington Days, we have seen five additional Senate cosponsors and 10 additional House cosponsors! NBDF will continue to work with partners to help advance this critical legislation.
CDC Director Remains in Limbo
The White House will hold off on picking a permanent CDC director despite the Acting Director’s time leading the agency expiring. Jay Bhattacharya, who also serves as Director of the NIH, is expected to remain in charge of the CDC while the White House continues its search for a nominee to take his place, but Bhattacharya will no longer be able to legally serve in that role and will lose the Acting Director title.
Federal law stipulates that an acting director may serve for 210 days, after which the Administration should put forward a nominee for the position. The 210-day clock that started when Susan Monarez was fired in late August, ran out on March 26. The director’s duties will still be delegated to Bhattacharya — except for a select few exclusive duties that will instead fall to HHS Secretary Kennedy.
NBDF Advocacy on Medicaid Work Reporting Requirements
As a result of a provision included in H.R. 1, which was signed into law on July 4, 2025, beginning no later than January 1, 2027, state Medicaid programs must implement “community engagement requirements,” also known as “work reporting requirements,” as a condition of Medicaid eligibility for certain adults, aged 19 through 64. Congress included a number of exemptions in the law including for individuals living with a serious or complex medical condition. NBDF joined with the Hemophilia Alliance, the Hemophilia Federation of America, and the Coalition for Hemophilia B, in sending a letter to the Centers for Medicare and Medicaid Services (CMS) as well as every State Medicaid Director, urging them to recognize bleeding disorders as serious or complex medical conditions, and thereby, exempting individuals living with a bleeding disorder from the work reporting requirements. NBDF is closely tracking this coming change and will provide updates to the community when they are available.
State:
California: The Bleeding Disorders Council of California hosted its annual Advocacy Day March 23. The group focused on several bills that would ban the use prior authorization for drugs that treat rare diseases, ban the use of copay accumulator adjuster policies, and ensure funding for the California Children Services program and the Genetically Handicapped Persons Program. Bleeding disorders patients are statutorily eligible for both programs.
Connecticut: NBDF and the New England Hemophilia Association (NEHA) provided written testimony on SB 3, the State’s omnibus healthcare bill which will implement work requirements because of HR 1.
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.
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.
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.
