Federal:
Government Shutdown (Updated)
On November 10th, 8 Senate Democrats joined Republicans to re-open the government. Although Senators were promised a vote on Advanced Premium Tax Credits before their expiration on December 31st, we do not have any information yet on the timeline nor content of that vote. NBDF's top priority is to extend the Advanced Premium Tax Credits, and will be advocating alongside our chapters and partners to demand Congress take action before their expiration. Please reach out to your Member of Congress through our legislative action center.
ACA Tax Credits
Although the ACA Marketplace tax credits do not officially expire until December 31, 2025, open enrollment is about to start (November 1), and many Americans have already received notices showing a steep increase in premiums for 2026. While some think that it’s too late for Congress to act now that open enrollment has begun, if Congress extends the tax credits, then the Administration and insurers will work together to implement the new law and lower premiums.
NBDF continues to advocate to make these tax credits permanent. Much of this advocacy work is done through NBDF’s participation in the Partnership to Protect Coverage (PPC). In mid-October, NBDF joined a PPC statement stating the urgency for Congress to act on this issue. We also urge the bleeding disorders community to act. Use NBDF’s action alert on this issue and tell contact your members of Congress to act now on the tax credits. It’s not too late.
Senate HELP Committee Holds Hearing on 340B
On October 23, the Senate Health, Education, Labor and Pensions (HELP) Committee held a hearing titled, “The 340B Program: Examining Its Growth and Impact on Patients.” The hearing focused on the growth of the 340B program in the hospital setting – hemophilia treatment centers were not mentioned. Senators on both sides of the aisle voiced the need for reform, calling for more transparency and oversight but there was also consensus that any reform should be done carefully so as to not harm rural hospitals and health centers. NBDF’s public policy team closely tracks all Congressional activity related to 340B as it is critical to the bleeding disorders community.
Open Enrollment Starts November 1
Open enrollment for ACA insurance begins November 1 in 49 states and the District of Columbia (it has been underway for a couple of weeks in Idaho). This is the time of year when consumers can compare the health plans available to them on the ACA Marketplaces and select or renew a plan that will best fit their needs for the coming year. It’s important not to miss this opportunity: once the open enrollment window closes, individuals can only sign up for or switch plans if they experience a “qualifying life event” that triggers a special enrollment period. You can find more information about signing up for insurance in this recorded webinar and in NBDF’s Insurance Toolkit. Some high-level pointers:
Anticipate higher premiums for 2026 (and join NBDF in urging Congress to extend the enhanced tax credits, as noted above);
If you are a current Marketplace customer, update the contact information that you have on file with the Marketplace, along with your income projections for the coming year, to ensure that you receive all assistance for which you are eligible;
Don’t wait until the last minute to enroll – build in time to gather all necessary information and to deal with any technical glitches that may arise;
Make an active choice – don’t allow yourself to be passively re-enrolled into your existing plan, as it may no longer offer the best benefits, networks, and/or cost protections; and
Avoid junk insurance. Don’t rely on Google – instead, start your search at healthcare.gov or at your state’s official ACA website.
National Bleeding Disorders Research Roundtable
NBDF hosted the inaugural Research Roundtable in Washington, D.C. on October 15-16, 2025, as part of the Bleeding Disorders Research Collaborative (BDRC) - an initiative advancing equitable, patient-centered research. The Roundtable brought together Lived Experience Experts (LEEs), researchers, healthcare providers, and industry leaders in a pre-competitive, product-agnostic environment to address barriers in bleeding disorders research. Although the FDA could not attend due to the government shutdown, NBDF consulted with them on key agenda topics beforehand and plans to engage them further once the government reopens.
The 2025 Research Roundtable focused on women, girls, and people who have or had the potential to menstruate (WGPPM) in clinical trials. Goals included identifying barriers, developing strategies and shared best practices, and defining actionable steps and measurable outcomes to improve trial design and participation.
This invitation-only meeting launched a continuing forum to advance inclusive, collaborative, and LEE-centered research. Guided by health equity, diversity, and inclusion principles, the BDRC ensures LEEs are involved in all aspects of research—from identifying barriers to shaping trial design—so studies reflect the lived experiences of those most impacted. The Research Roundtable created an important opportunity to achieve this.
NBDF will share highlights, next steps, and plans for ongoing engagement with the FDA and other partners to strengthen the inclusion of WGPPM in clinical trials.
States:
Michigan: In the recently passed State budget, the Michigan legislature rejected a proposed 2026 implementation of Medicaid work requirement programs, leaving the state to follow the timeline of work requirements being implemented in January 2027, as required by HR 1.
The legislature also continued funding for Michigan’s Children’s Special Health Care Services program, which provides supplemental coverage for children and adults with certain chronic conditions including bleeding disorders.
Ohio: SB 207, Ohio’s copay accumulator adjuster legislation, received two hearings in the Ohio Senate Financial Institutions, Insurance and Technology Committee. Sen. Beth Liston, the bill’s sponsor, provided testimony including patient stories of those affected by accumulator maximizers and alternative funding programs. The bill remains in Committee for further consideration.
Wisconsin: SB 203, a PBM reform bill that includes copay accumulator adjuster language, failed to make the Senate floor calendar this month and is anticipated to be on the November calendar.
