Federal:
NBDF Wraps Up Another Successful Washington Days
Last week, 357 advocates met with 244 different offices on Capitol Hill as part of NBDF’s annual Washington Days to talk about issues important to the bleeding disorders community. Advocates shared personal stories about how bleeding disorders have impacted their lives and asked offices to support federal funding for bleeding disorders programs for fiscal year 2027, the Help Ensure Lower Patient Copays Act (H.R. 6423/S.864), and new legislation, the Fostering Effective Diagnosis and Treatment for Underserved Populations (FED UP) with Bleeding Disorders Act, which aims to address some of the many barriers faced by women and girls living with bleeding disorders. Advocates ended the day having secured new cosponsors for the HELP Copays Act and a Republican lead for the letter on federal funding and the FED UP with Bleeding Disorders Act – ensuring that both are bipartisan efforts.
NBDF will continue to update advocates on the impact of Washington Days. Thank you to everyone who took the time to make the trip to DC – your advocacy makes a difference!
HHS Releases Annual Regulation on Marketplace Plans for 2027
On February 9, the Department of Health and Human Services released the Notice of Benefit and Payment Parameters (NBPP) for plan year 2027. The NBPP is an annual rule which sets regulations for Affordable Care Act Marketplace plans. This most recent rule includes proposals to drastically expand access to catastrophic health plans (high-deductible plans that would provide inadequate coverage for people living with serious medical conditions, such as a bleeding disorder). The rule includes several other harmful proposals, such as allowing non-network plans to be sold on the Marketplaces – this could make it harder for someone to access needed care and could expose individuals to surprise medical bills. NBDF partnered with the Hemophilia Alliance to send comments in response to the rule, opposing these harmful policies.
Congress Passes Fiscal Year 2026 Funding Package with Wins for the Bleeding Disorders Community
In early February, Congress finally advanced, and the President signed into law, a funding package for federal programs for fiscal year (FY) 2026, which runs through September 30, 2026. All three federal bleeding disorders programs – housed at the Health Resources and Services Administration and at the Centers for Disease Control and Prevention – were maintained with the same funding levels as FY 2025.
The funding package also included other policies supported by NBDF, including the Accelerating Kids’ Access to Care Act, which will make it easier for kids with complex medical conditions insured by Medicaid and CHIP to access care out of state. In addition, the package included provisions targeting pharmacy benefit managers and reauthorized a federal program which aims to incentivize drug development for rare pediatric diseases.
Leadership Changes at HHS
The Department of Health and Human Services (HHS) continues to undergo personnel changes. Most relevant to the bleeding disorders community are the recent changes to staffing at the CDC. Ralph Abraham, the second-in-command at the CDC, stepped down on February 23, less than a week after Secretary Kennedy announced that Dr. Battacharyra, already Director at NIH, would also lead the CDC. Dr. Battacharya is pushing for more integration between the agencies, but it is not clear what this means. Ralph Abraham was in the job for a little less than two months and had drawn controversy because of his skepticism about vaccinations, backing unproven COVID treatments and urging women to avoid Tylenol during pregnancy. The CDC has not had a permanent director since August 2025 when Susan Monarez was fired.
State:
California: The Office of Health Care Affordability hosted a Patient and Consumer Forum on Health Care Affordability March 10 in Sacramento.
The purpose of this forum was to engage directly with patients, consumers, and advocates on OHCA’s work to promote more affordable health care while maintaining or improving access, equity, and quality.
Assemblymember Zbur has introduced AB 1887, which would prohibit the use of step therapy and prior authorization for prescription drugs that treat rare diseases, unless the drug has a generic or biosimilar.
Sen. Weber Pierson introduced SB 1199, which would ban the use of copay accumulator adjuster policies.
Colorado: The House Health and Human Services Committee held a hearing on HB 1056 February 17. NBDF and other patient advocacy groups oppose the bill, which would allow for foreign drug importation and the use of Alternative Funding Programs. The bill failed 2-10.
NBDF submitted comments on a draft Medicaid applicant worksheet that included a section on exemptions from work requirements.
Hawaii: Sen. McKelvey has introduced SB 2933, which would ban the use of copay accumulator adjuster policies and create a Prescription Drug Affordability Board. The bill received a hearing on Feb. 17 in the Senate Health and Human Services and Senate Consumer Protection Committees. The measure was deferred by both committees.
Idaho: Rep. Cannon introduced HB 713, a clean copay accumulator ban. The bill was heard in the House Health and Welfare Committee Feb. 26, 2026, and failed 7-8.
Missouri: The Senate Committee on Families, Seniors, and Health passed Sen. Fitzwater’s SB 970 on Feb. 4. The House Health and Mental Health Committee combined three copay accumulator adjuster bills (HB 1941, HB 2279, HB 1681) into one bill (HB 1941) and passed it 15 – 2 on Feb. 12, 2026.
Nebraska: The Nebraska Chapter of NBDF held its Advocacy Day February 25 and focused on support for Sen. Wordekemper’s copay accumulator bill LB 158.
The state Department of Health and Human Services held a hearing on proposed changes to the state’s Heritage Health Adult Program (Medicaid) which would implement work requirements for certain program applicants and beneficiaries. NBDF testified on the proposal urging the department to take an expansive view of applicants who may qualify for an exemption from the requirement through their “Medical Frailty” status.
Pennsylvania: HB 2226, the Commonwealth’s copay accumulator legislation, was introduced by Rep. Darisha Parker and a bipartisan group of seven additional lawmakers.
South Carolina: The Bleeding Disorders Association of South Carolina (BDASC) and NBDF were at the Capitol in Columbia alongside over 60 advocates to advocate for H. 3934/ S. 330, the State’s copay accumulator ban legislation. Additionally, advocates were recognized in the Senate chamber.
Vermont: NBDF and the New England Hemophilia Association (NEHA) submitted joint testimony in opposition to H. 585, allowing for expanded access to Association Health Plans (AHP’s) and short-term, limited duration insurance that do not have to follow core Affordable Care Act requirements.
West Virginia: On February 25, the West Virginia Chapter of NBDF held their advocacy day in Charleston to discuss Medicaid, the Chapter’s dental program, and to advocate for strong protections against insurer cost-sharing practices like copay maximizer programs through H.B. 5483. Unfortunately, the bill did not make it out of the Joint Committee on Finance.
Wisconsin: The Assembly Committee on Health, Aging, and Long-Term Care held a hearing on AB 173, a PBM reform bill that includes language banning copay accumulator adjuster policies, on February 11.
The Wisconsin Group Insurance Board has received a proposal from the PBM of its state employee health plan, Navitus, to include a copay maximizer and Alternative Funding Program in the state health plan. NBDF submitted written testimony in opposition to the proposal. The GIB held a hearing on the proposal February 26 but did not vote.
