Federal:
Fiscal Year 2026 Funding Update
On November 12, after 43 days and the longest government shutdown in history, legislation was passed to fund most federal agencies at current levels through January 30. Full-year fiscal 2026 funding was included for the Food and Drug Administration and a few other Departments, including Agriculture and Veterans Affairs. The legislation authorizes funds to provide back pay for federal employees, including those who were furloughed, and undoes some of the recent reductions in force for federal employees. The bill also extends the Medicare telehealth flexibilities through January 30 – these flexibilities which have been in place since the COVID-19 pandemic had expired on September 30.
Notably the legislation does not address full-year funding for any other health care programs, including funding for NIH or CDC, nor does it extend the Affordable Care Act enhanced tax credits which had been at the center of the shutdown fight. Senate Republicans have pledged to hold a vote on the tax credits before the end of the year, though Speaker Johnson has yet to agree to do the same.
Appropriators are now turning (back) to the other FY26 bills to try to move them forward before the January 30th deadline – this includes the legislation which addresses the federal bleeding disorders programs, which will be funded at current levels through the end of January.
New proposals but little action on enhanced tax credits
With about a month left before the enhanced ACA tax credits expire, a number of proposals have been introduced but Congress has yet to act. The policies put forth vary, including differing lengths of time for extension and differences in eligibility – with some proposals keeping the eligibility as is, while others narrow eligibility requirements. Republicans have begun discussing alternative policies, many of which focus on bolstering American’s health savings accounts (HSAs). The White House is also rumored to have a proposal, but the policy has yet to be released.
If you haven’t done so already (or even if you have!), NBDF encourages members of the bleeding disorders community to contact your Members of Congress to tell them that they must act now to extend the ACA tax credits.
New Medicaid Drug Pricing Model Announced
On November 6th, CMS announced that it would launch a new voluntary model for states and drug manufacturers aiming to bring the Trump Administration’s “most favored nation” approach to drug pricing to Medicaid. Under this model, the Generating Cost Reductions for U.S. Medicaid, or “GENEROUS,” CMS would negotiate with participating manufacturers for lower prices. States that opt into the model would receive those prices in exchange for implementing uniform coverage criteria for their Medicaid beneficiaries. The model is slated to launch in January 2026.
Administration Action Makes It Harder for States to Protect Consumers from Medical Debt
On October 28, the Consumer Financial Protection Bureau (CFPB) released an interpretive rule which outlines a new interpretation of the Fair Credit Reporting Act (FCRA) – the guidance states that federal law bars states from restricting medical debt from credit reports, arguing that only the federal government has this authority. This reverses an interpretation released by the Biden Administration in 2022 which had provided greater flexibility to states to enact their own consumer reporting laws.
More than a dozen states currently prohibit the reporting of medical debt on a consumer’s credit report (California, Colorado, Connecticut, Delaware, Illinois, Maine, Maryland, Minnesota, New Jersey, New York, Oregon, Rhode Island, Vermont, Virginia, Washington). While the recent guidance “does not have the force or effect of law” and therefore, does not immediately roll back existing state protections, it could lead to legal challenges in the 15 states with prohibitions and will likely stall or stop progress in additional states.
States:
Arizona: Carrera Christman, a bleeding disorders community member, was appointed to the state’s Rare Disease Advisory Council October 6 by House Speaker Steve Montenegro.
Pennsylvania: The Pennsylvania legislature passed the Commonwealth’s Fiscal Year 2026 budget on November 22, five months past the June deadline. Within the budget, Pennsylvania Hemophilia Treatment Centers received level funding ($1.07 million) for non-billable HTC services and patient support. NBDF and both Pennsylvania chapters advocate for this funding each year in the legislature.
Wisconsin: SB 203, a PBM reform bill that includes copay accumulator adjuster language, failed to make the Senate floor calendar again this month and is anticipated to be on the January calendar.
