Federal Updates:
House of Representatives Reintroduces HELP Copays Act
In early December, Representatives Kean (R-NJ), Barragan (D-CA), Miller-Meeks (R-IA), Auchincloss (D-MA), Fitzpatrick (R-PA), and Watson-Coleman (D-NJ) reintroduced the Help Ensure Lower Patient (HELP) Copays Act (H.R. 6423). The bill is identical to the version introduced by Senators Marshall (R-KS) and Kaine (D-VA) in March 2025. This legislation has been a long-time priority for NBDF and would end deceptive insurance tactics, such as copay accumulator adjustor programs and copay maximizers. The bill has garnered an additional 10 cosponsors since introduction!
Contact your Senators and Representative today to urge them to support the HELP Copays Act!
ACA Tax Credit Update
The enhanced Affordable Care Act (ACA) tax credits expired at the end of 2025 as a result of Congress’s inability to reach a compromise. In December, however, a majority of the House of Representatives agreed on a procedural step to force a vote on the issue in January – four Republicans, Reps. Fitzpatrick (R-PA), Lawler (R-NY), Bresnahan (R-PA), and Mackenzie (R-PA), broke with party leadership and joined the Democrats to sign what is known as a discharge petition. The House vote on a clean three-year extension of the tax credits has been scheduled for January 8. Although this particular bill would likely not pass the Senate, it is possible it will create an opportunity for some sort of compromise.
This has been an advocacy priority for NBDF – thank you to all who have taken the time to take action!
2026 Federal Funding
Congress will be busy in January with only a few working weeks left to address funding for fiscal year 2026. Currently, the government is operating under a short-term funding bill or continuing resolution (CR), which provides funding for most government health care programs through January 30, 2026. Advocating for the federal bleeding disorders programs continues to be a priority for NBDF.
CMS Releases New Drug Pricing Models
In late-December, the Trump Administration announced two new models aimed at lowering the cost of drugs. The Guarding U.S. Medicare Against Rising Drug Costs (GUARD) Model is a mandatory model specific to Part D drugs which would test a new payment model with prices more based on those of other countries. More relevant to the bleeding disorders community is the Global Benchmark for Efficient Drug Pricing (GLOBE), a mandatory model that would be similar but target Part B drugs (most bleeding disorders treatments are paid for under Part B). The GLOBE Model would begin October 1, 2026, and operate for five years – it would apply to Medicare beneficiaries in a defined geographic area, encompassing approximately 25% of Medicare beneficiaries.
NBDF will be learning more about both models to better understand how they could impact the bleeding disorders community.
Medicaid Data Sharing with ICE
According to multiple news outlets, the U.S. Centers for Medicare & Medicaid Services (CMS) in mid-July 2025 provided the personal data of millions of Medicaid enrollees to the U.S. Department of Homeland Security (DHS), as part of the Administration’s ongoing immigration enforcement efforts. This action marked a change from longstanding policy and previous practice barring such information sharing. A lawsuit filed by 22 states in August 2025 temporarily stopped DHS from acting on this data and from obtaining any additional data with respect to residents of those states.
A recent court decision from December 29, however, concluded that certain data sharing (i.e., basic biographical, location, and contact information) is “clearly authorized by statute.” This means data can be shared if it is from the Medicaid program, falls into one of those listed categories, and it pertains to someone who is not lawfully residing in the US. This applies specifically to the states that were originally part of the August 2025 lawsuit.
State Updates:
State legislatures across the country enter session in January, with access to affordable healthcare being one of the top issues. NBDF and state chapters need your voice in State Capitols this year to protect access to comprehensive healthcare and insurance. Contact your local chapter today for upcoming state advocacy opportunities. Find your nearest NBDF chapter here
