Explore the latest updates on federal budget reconciliation, healthcare lawsuits, and state-level policy changes impacting bleeding disorders. Learn how NBDF is advocating for access, funding, and patient protections.
Federal:
Budget Reconciliation Update: As noted in last month’s update, President Trump on July 4th signed into law H.R. 1, a mega-reconciliation bill that makes $1 trillion in cuts to federal health programs including Medicaid and the ACA Marketplaces. Updated projections suggest that implementation of the law will cause sixteen million people to lose insurance coverage over the next 10 years. NBDF will continue advocating to mitigate harmful effects of the law and will (beginning with the Bleeding Disorders Conference in August) offer education to arm the bleeding disorders community with the knowledge that members need to make informed insurance decisions in the coming months.
Lawsuits Continue on Multiple Fronts: Twenty-one states filed suit in federal court on July 17th to block implementation of numerous provisions of the recently finalized Marketplace integrity rule (restrictions on auto-reenrollment, shortened open enrollment period, special enrollment verification requirements, etc.). The plaintiffs seek emergency relief (postponement of the August 25th effective date) as well as permanent relief (permanent injunction and vacating of the rule). The states’ lawsuit comes on the heels of a separate challenge to the rule filed on July 1 by a group of cities in conjunction with Doctors for America and the Main Street Alliance.
A large number of federal government employees were formally laid off in July, as permitted by a July 8th Supreme Court ruling – but a separate district court order remains in place pausing planned reductions in force in certain programs at the Centers for Disease Control and Prevention (CDC) and elsewhere. Those CDC employees remain on administrative leave. On July 11, a federal court in Texas reversed a Biden-era rule which permitted medical debt to be wiped from people’s credit reports. The court ruled that the regulation exceeded the authority of the Consumer Financial Protection Board.
Federal Funding Update: On July 31, the Senate Appropriations Committee passed their Labor, Health and Human Services, and Education Appropriations bill for fiscal year (FY) 2026. Often referred to as the L-HHS bill, the Senate bill contains good news for federal bleeding disorders programs. The two programs housed at the Centers for Disease Control and Prevention (CDC) are maintained at current funding levels. These programs provide funding for HTC surveillance and prevention activities and support outreach and education programs provided by national bleeding disorders patient organizations. The Senate Appropriations Committee
also supports maintaining current funding levels for the hemophilia program housed under the Health Resources and Services Administration, which provides funding to HTCs to provide services not typically covered by insurance.
This is just the first step in the appropriations process – the full Senate still needs to pass the bill, and the House must still consider and pass their appropriations bills. All of this must be done before September 30, 2025. As in past years, Congress may be unable to meet this deadline, and we may see another short-term funding fix, known as a continuing resolution (CR). While ideally Congress would pass new funding bills for FY26, a CR also maintains funding at current levels.
State:
Iowa: On July 21, the U.S. District Court for the Southern District of Iowa granted a preliminary injunction requested by Iowa business groups to suspend implementation of the recently passed PBM reform bill (SF 383). However, the judge ruled that two provisions of the bill dealing with copay accumulator adjusters were not subject to the injunction and could move forward. NBDF and Bleeding Disorders of the Heartland testified in support of the accumulator adjuster language during a Senate hearing February 4.
Massachusetts: In the recently signed Massachusetts state budget (H.4240), the legislature included an extension allowing for the use of copayment assistance in the Commonwealth until January 1, 2031. Without this extension, Massachusetts residents would have been unable to use copayment assistance after the end of the year. The bill was signed by Gov. Healy in July.
Ohio: Despite efforts by patient advocacy organizations the state budget passed with a provision that eliminated the state’s Rare Disease Advisory Council (RDAC). Gov. DeWine has pledged to work with patient groups, including the Ohio Bleeding Disorders Council, to bring back the RDAC.
