Federal:
FED UP with Bleeding Disorders Act Introduced in House
On May 22, Representatives Julie Johnson (D-TX-32), Joe Wilson (R-SC-02), and Sarah McBride (D-DE-At Large) introduced the Fostering Effective Diagnosis and Treatment for Underserved Populations (FED UP) with Bleeding Disorders Act of 2026. This legislation, drafted by NBDF, is dedicated to addressing some of the many barriers faced by women and girls living with bleeding disorders. The FED UP with Bleeding Disorders Act (H.R. 8794) calls for an interagency review to identify Federal programs, activities and strategic plans related to research, training and education of providers, access to treatment and services, and inclusion in clinical trials all as they relate to women and girls with bleeding disorders. The review would culminate in a report that would include the findings and identify recommendations. Lastly, the bill calls for a national public education and awareness campaign utilizing the findings from the review and report.
NBDF is proud of the role it played in advancing this legislation. We thank the many advocates who shared their experiences and laid the groundwork for this bill during Washington Days 2026. You can ask your Member of Congress to become a cosponsor today through NBDF’s action alert on the bill. Read more in NBDF’s press release on the bill.
NBDF and Hemophilia Alliance Lead on Letter on Copay Diversion Practices and Alternative Funding Programs
NBDF and the Hemophilia Alliance were joined by nearly 30 national and state organizations in a letter to the White House Domestic Policy Council and the Department of Health and Human Services highlighting the existing administrative authority that could be used to rein in abusive practices, such as copay accumulator adjuster programs, copay maximizers, and alternative funding programs. The letter provides an overview of these practices as well examples and ideas of how the Administration could take action now to address them. NBDF continues to serve in leadership roles in both the All Copays Count Coalition and the Alternative Funding Task Force.
FDA Renews Charter for the Blood Products Advisory Committee
Earlier this month, the Food and Drug Administration announced the renewal of the Blood Products Advisory Committee (BPAC). The current charter was set to expire on May 13, 2026; the new charter will be in effect until May 13, 2028. The Committee is tasked with responsibilities related to ensuring safe and effective drug and biological products for human use, including reviewing data concerning the safety, effectiveness, and appropriate use of blood, products derived from blood and serum or biotechnology and advising on findings related to screening and testing of donors and labeling of products.
Nebraska Launches Medicaid Work Reporting Requirements Ahead of Statutory Deadline
On May 1, Nebraska became the first state to launch new Medicaid work reporting requirements. A 2025 federal law requires states (effective January 1, 2027) to impose work and paperwork requirements on certain adults who are seeking to get or keep Medicaid coverage. People who do not meet these requirements will lose Medicaid coverage (if currently enrolled) or will be denied coverage (for new applicants). The federal statute includes various exemptions, including for people living with “serious or complex” medical conditions.
NBDF and bleeding disorders partners have urged the U.S. Centers for Medicare and Medicaid Services (CMS) and all state Medicaid programs to recognize that bleeding disorders are “serious or complex medical conditions” and that people living with bleeding disorders meet the criteria for exemption from the new requirements. States are awaiting further guidance from CMS (expected June 1) on how to implement their work requirement programs. In the meantime, Nebraska has published an initial list of conditions that qualify for exemptions. Some but not all bleeding disorders are included in the Nebraska list. NBDF has continued to engage with Nebraska, urging the state to expand its list to include the omitted conditions.
As implementation of the new law continues across the country, policies related to work reporting requirements and medical exemptions will vary by state. NBDF will continue to provide information to the community on how to comply with these new requirements and most importantly, how to protect your Medicaid coverage.
State:
California: The General Assembly passed A.B. 1887 unanimously on May 27th. The bill would prohibit health plans from imposing utilization management practices on drugs used to treat rare diseases. The bill moves to the Senate.
The Senate Appropriations Committee passed SB 1199 unanimously May 14th. The bill would ban the use of copay accumulator adjuster policies. The bill moves to the Senate floor.
Connecticut: The Connecticut Legislature passed SB 3, which 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 via SB 3.
Michigan: The Hemophilia Foundation of Michigan (HFM) and community advocate Ken Martin testified before the Michigan Senate Committee on Finance, Insurance and Consumer Protection on SB 914 (Senator Chang), the state’s copay accumulator adjuster ban legislation.
Minnesota: The Department of Human Services, Office of Medicaid Medical Director (DHS) issued a Request for Information May 21 to identify and obtain information for the medically frail definition that will be used for implementation of new Medicaid requirements pursuant to Public Law 119-21, Section 71119 (H.R. 1). The draft clinical definition of medical frailty included a list of Specific Clinical High-Risk Medical Frailty Diagnosis Codes, which included all of the ICD-10 codes for bleeding disorders.
Ohio: NBDF Government Relations Manager Matt Delaney and Randi Clites and Helen Lamping of the Ohio Bleeding Disorders Council met with the Ohio Department of Medicaid to express concern over work requirements and providing information on bleeding disorders treatment ahead of the state’s implementation of work requirements in January. OBDC and NBDF stressed that bleeding disorders are serious and complex medical conditions that are not conducive to work requirement policies.
NBDF and OBDC also met with members of the Ohio Senate and House leadership to advocate for SB 207, the state’s copay accumulator adjuster legislation. As a result of the meetings, House members Rachel Baker (D) and Brian Lorenz (R) introduced companion legislation in the Ohio House, HB 937.
Vermont: H. 585, legislation to expand “junk insurance” such as Association Health Plans (AHP’s) and Short-Term Limited Duration (STLD) plans, died in the Vermont Senate. NBDF and NEHA provided written testimony opposing H. 585.
