FY 2026 Funding Update
Last week, the House of Representatives passed the final fiscal year (FY) 2026 appropriations bills. This includes the FY26 Labor, Health and Human Services appropriations bill, which provides funding for the federal health agencies. There were big wins in the bill for the bleeding disorders community, including:
- Continued level funding for the two hemophilia programs at the Centers for Disease Control and Prevention and the hemophilia program at the Health Resources and Services Administration.
- The Accelerating Kids’ Access to Care Act, legislation which will streamline the enrollment process for eligible out-of-State providers under Medicaid and CHIP.
- The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act which reauthorizes HRSA’s Sickle Cell Disease Treatment Demonstration Program for another five years.
- The Mikaela Naylon Give Kids a Chance Act which reauthorizes the FDA’s rare pediatric disease priority review voucher program which aims to incentivize drug development for rare pediatric diseases.
The bills are now with the Senate – the Senate must act by January 30 or face a partial government shutdown. Prospects for passage of this package seemed hopeful last week but the events in Minneapolis over the weekend have now led to reports of a possible shutdown after Senate Democrats asserted they will not vote for the Department of Homeland Security funding bill.
House Votes on eAPTC Extension
On January 8, the House of Representatives passed legislation which would extend the ACA enhanced tax credits for an additional three years. The Senate has yet to take up the bill and notably, it was not included in the FY26 federal health bill. There are reports of a bipartisan group of Senators who are working on their own version of an extension.
You can still take action on this issue – let your lawmakers know it is not too late to extend the tax credits!
President Trump Released a Healthcare Plan
On January 15, the White House released an outline of and called on Congress to enact the Great Healthcare Plan. The fact sheet outlines ideas and proposals to lower drug prices, lower insurance premiums, hold insurance companies accountable and increase transparency, but does not provide much detail on the policy and/or how this will be enacted. There has not been a strong response to the proposal from Capitol Hill with attention currently directed at the funding package.
State:
Colorado: The House Health and Human Services Committee is expected to hold a hearing on HB 1056 the week of February 8. NBDF and other patient advocacy groups oppose the bill, which would allow for foreign drug importation and the use of Alternative Funding Programs.
Hawaii: The Hawaii Chapter of NBDF will be holding its Advocacy Day February 9. The chapter is supporting legislation to limit the use of step therapy (SB 226) and to create a Rare Disease Advisory Council (HB 1288, SB 1497).
Kansas: Sen. Sykes has introduced a copay accumulator adjuster bill (SB 423).
Missouri: The Senate Committee on Families, Seniors, and Health held a hearing on Sen. Fitzwater’s copay accumulator adjuster bill, SB 970, on January 14. The House Health and Mental Health Committee will hold a hearing on two copay accumulator adjuster bills (HB 1941, HB 2279) February 5. There are currently seven copay accumulator bills under consideration in the state legislature.
New Hampshire: NBDF continues to monitor and engage on S. 134-FN, legislation to enact Medicaid work requirements in New Hampshire. Implementation must require clarity and consideration for care for individuals with bleeding disorders.
New Jersey: A. 5127, the State’s copay accumulator adjuster ban, was signed into law by Governor Murphy on January 9. New Jersey marks the 26th state to ban copay accumulator adjuster programs. Hemophilia Association of New Jersey Executive Director, Stephanie Lapidow, played a critical role in advancing the bill through the legislature.
New York: S.1287A/A.1296, which codifies the organization and function of a New York State Rare Disease Advisory Council, was introduced in Health committee. This legislation would codify the current work and organization of the New York State Rare Disease Work Group under the New York State Department of Health.
South Carolina: The Bleeding Disorders Association of South Carolina held their annual legislative breakfast in Columbia on January 14. Among the primary issues was ensuring support for S. 330/H. 3934, the State’s copay accumulator adjuster ban legislation.
Virginia: Because of January’s snowstorm, advocates from the Virginia Bleeding Disorders Foundation and the Hemophilia Association of the Capital Area met with legislators and staff virtually to inform new Delegates about bleeding disorders. Additionally, advocates discussed concerns over large-scale Medicaid changes and the impact on bleeding disorders, and supported the reauthorization of the Commonwealth Health Reinsurance Program (H. 327).
Wisconsin: Great Lakes Hemophilia Foundation held its Advocacy Day January 28 alongside Wisconsin All Copays Count Coalition advocates from the Arthritis Foundation in support of SB 203 and AB 173. The state legislature is expected to adjourn after Valentines Day.
