Federal:
Washington Days
On March 6, over 400 advocates from the bleeding disorders community were in Washington, DC to meet with their legislators and their staff about issues important to the bleeding disorders community. Advocates participated in 248 Congressional meetings, almost evenly split between Democratic and Republican offices, representing 49 states and Puerto Rico.
Congress Passes Bill to Fund Government Just Ahead of Shutdown Deadline
On March 14, Congress narrowly passed a continuing resolution (CR) or short-term funding bill to avoid a government shutdown. The bill, which will fund the federal government through September 30, 2025, included a provision extending the telehealth flexibilities which have been in place since the COVID-19 pandemic through September 30, 2025 – NBDF continues to support the extension of these flexibilities. Congress now has until September 30 to address funding for FY 2026, which begins October 1, 2025.
Massive Layoffs and Restructuring at the Department of Health and Human Services
On March 27, the Department of Health and Human Services (HHS) announced a significant restructuring, including a drastic reduction in the number of employees as well as organizational changes. The organizational changes include the creation of a new agency, the Administration for a Healthy America, which will combine multiple agencies, including the Health Resources and Services Administration (HRSA), which houses hemophilia programs.
In response to the reduction in force, on April 1, thousands of employees throughout HHS, including at the CDC, NIH, FDA, and CMS received termination emails. It has been reported that all but two people within the CDC’s Division of Blood Disorders and Public Health Genomics were laid off. It is still unclear what the impact of this restructuring will have on existing programs, but it is certain that layoffs of this size will affect the operations of many federal programs. NBDF is working closely with community and coalition partners and Congressional champions to understand what is happening and will continue to advocate to protect all federal bleeding disorders programs.
HELP Copays Adds New Cosponsors
Thanks to the hard work of advocates during NBDF’s Washington Days, the HELP Copays Act (S. 864), has six additional cosponsors – Sens. Moore Capito (R-WV), Coons (D-DE), Budd (R-NC), Murray (D-WA), Boozman (R-AR), and Shaheen (D-NH).
CMS Releases Proposed Rule Focused on Health Insurance Marketplaces
On March 10, the Centers for Medicare and Medicaid Services (CMS) released a proposed rule which focuses on changes to Affordable Care Act marketplaces. The rule proposes a number of changes which will ultimately make it harder for individuals to enroll in and keep marketplace coverage. For example, the rule proposes to reduce open enrollment by one month, rolling it back from January 15 to December 15, and to do away with the special enrollment period for individuals at or below 150% of the federal poverty level. NBDF will join fellow members of the Partnership to Protect Coverage to urge CMS to reject these harmful proposals.
Senate Confirms Heads for NIH and FDA
On March 25, the Senate confirmed Dr. Jay Bhattacharya as Director of NIH and Dr. Martin Makary as Commissioner of FDA. Dr. Mehmet Oz, the nominee to lead CMS, has been approved by the Senate Finance Committee and is waiting for approval by the full Senate.
President Trump’s nominee to lead the CDC, Dr. Dave Weldon, was pulled last minute, and has been replaced by Susan Monarez, who is currently the acting director at the agency. She will still need to be confirmed by the Senate.
Peter Marks Resigns from Food and Drug Administration
Dr. Peter Marks, longtime friend of the bleeding disorders community, and director of the Center for Biologics Evaluation and Research (CBER) at the Food and Drug Administration (FDA), announced that he will resign from his position by April 5. Dr. Marks was given the option to resign or be fired by the new Administration – he opted to resign, citing disagreements with Secretary Kennedy regarding vaccines, and highlighting an “unprecedented assault on scientific truth” in the US.
State:
Arizona: HB 2380, a bill creating a Rare Disease Advisory Council, awaits its third and final reading on the Senate floor.
Connecticut: NBDF is proud of advocate Waylon Page, a 13-year-old advocate with NEHA who has introduced and testified for HB 7200, which would require bleeding control kits in public spaces and buildings across the state. The bill has passed several committees, with Waylon’s testimony, and now is being assessed for a fiscal note. Great job, Waylon!
Indiana: On March 18, Hemophilia of Indiana advocate Vanessa Flora and representatives from Innovative Hematology testified before the Senate Insurance and Financial Institutions Committee in support of an amendment to HB 1604 to ban copay accumulator adjusters. The amendment was accepted in committee and HB 1604 passed the Senate on March 25. The bill goes back to the House of Representatives for a concurrence vote.
Maryland: SB 773, Sen. Hershey’s copay accumulator bill, was amended with language allowing the use of copay maximizer programs. Copay accumulator bills in both the House and Senate have now been amended by opponents to make them unacceptable to NBDF.
Michigan: On March 19, NBDF and the Hemophilia Foundation of Michigan advocated in Lansing ahead of introduction of a copay accumulator adjuster ban and step therapy legislation and advocated for flat funding for Michigan’s Children’s Special Healthcare Services program. CSHS provides supplemental health care coverage for life for patients with chronic conditions such as bleeding disorders. HFM and NBDF also urged the legislature to fully fund the State’s Rare Disease Advisory Council.
Missouri: SB 45 has been placed on the Senate floor calendar.
Nebraska: NBDF testified with Nebraska Chapter advocates before the Senate Banking, Commerce, and Insurance Committee March 2 in support of Sen. Wordekemper’s copay accumulator adjuster bill LB 158.
New Jersey: On March 19, Stephanie Lapidow, Executive Director of the Hemophilia Association of New Jersey, testified before the Assembly Appropriations Committee in support of A. 5217, the State’s copay accumulator adjuster legislation. This was the third time Stephanie has testified on the CAAP legislation, and the bill passed the committee unanimously on March 20. The bill subsequently passed the full Assembly unanimously on March 24. The bill’s companion, S. 3818, sits in the Senate Budget and Appropriations Committee.
New York: On March 17, the New York State Bleeding Disorders Coalition and NBDF were in Albany advocating for legislation making the Rare Disease Advisory Council permanent, and for S. 965 (Hoylman-Sigel), which would provide in-network coverage for rare disease specialists. Bob Graham, NYSBDC Public Policy Director, served on the New York Rare Disease Advisory Group prior to its sunset.
North Dakota: HB 1216 passed the Senate March 21, 30-14, despite failing (4-1) in the Senate Human Services Committee the week before. Sen. Judy Lee, chair of the Human Services Committee, supported the bill on the floor and recognized the bleeding disorders community for raising awareness and understanding of the impact of copay accumulator adjusters on patients with chronic diseases. Sen. Lee was joined on the Senate floor by Bleeding Disorders Alliance of North Dakota advocate Chris Peterson. The bill will be heard in Senate Appropriations March 31. To see Sen. Lee’s remarks click on the link below.
North Dakota Legislative Branch Video
Rhode Island: On March 26, representatives from the New England Hemophilia Association met with Gov. Dan McKee to discuss health care access challenges faced by bleeding disorders patients prior to the signing ceremony of the Governor’s proclamation designating March as Bleeding Disorders Awareness Month. Rhode Island currently has copay accumulator legislation, SB 477, which was recommended for further study by the Senate Health and Human Services Committee on March 11.
Tennessee: HB 870 passed the House Insurance Committee March 25. Further action on SB 420 is not likely this session and the focus is now on 2026.
Virginia: On March 24, Gov. Youngkin vetoed HB 1724, which would create a Prescription Drug Affordability Board in the Commonwealth. NBDF and the Virginia Hemophilia Foundation submitted testimony raising concerns about the bill.
