Federal:
2025 Bleeding Disorders Conference
NBDF wrapped up another successful Bleeding Disorders Conference. The policy team was busy with sessions on blood and product safety, access to insurance, and sharing updates on what’s happening in Washington, DC. This year there was also a session dedicated to NBDF’s advocacy efforts focused on women and girls. You can see the highlights from this year’s conference here.
Take Action! Protect Access to Tax Credits for Marketplace Plans and Federal Bleeding Disorders Programs
If you attended BDC, this will likely sound familiar, but NBDF needs you to take action now! There are two active advocacy campaigns – one focused on protecting the federal bleeding disorders programs and a second asking Congress to extend the enhanced advance premium tax credits.
Congress is in the process of working through the appropriations process ahead of the September 30 funding deadline. We are calling on Congress to maintain funding for the three federal bleeding disorders programs for 2026. These programs support care, research, and public health monitoring for bleeding disorders; oversee and ensure blood and product safety; and foster innovation and advances in treatment for people with bleeding disorders. Contact your member of Congress and ask them to protect our federal health programs.
The tax credits, originally created under the Affordable Care Act (ACA) to help individuals afford their Marketplace plan premiums, were made more generous and were made available to more people through legislation passed in 2021 and 2022. The enhanced tax credits, however, are slated to expire at the end of 2025 – meaning premiums will soar, making it hard or impossible for many enrollees to maintain their coverage. Please join NBDF (and many allies across the patient advocacy community) and tell Congress to act NOW to extend the tax credits and preserve access to coverage.
Update on Medicaid Data Shared with Immigration Authorities
In mid-July it was reported that the Centers for Medicare and Medicaid Services (CMS) had provided the personal data of millions of Medicaid enrollees to the Department of Homeland Security (DHS) as part of the Administration’s ongoing immigration enforcement efforts. NBDF, alongside the Hemophilia Federation of America, issued a statement opposing this action and reiterating the importance of protecting patients’ personal and health information. On August 12, a federal judge issued an emergency order temporarily barring DHS from using this data for purposes of immigration enforcement. The court noted that CMS’s data transfer marked a departure from the agency’s longstanding, publicized policy of only using patients’ personal information to run its health care programs. The court’s order will remain in place until the litigation ends, or DHS and HHS complete a reasoned decision-making process or rulemaking.
Court Blocks Portions of the Administration’s Marketplace Rule: On August 22, a federal district court entered an emergency stay that (temporarily) prevents some of the Administration’s restrictive new Marketplace Rule from going into effect. The court order blocks:
- Policies that would have prevented enrollees from auto-renewing $0 premium plans;
- Policies that would have allowed health plans to deny new coverage to consumers who owe past-due premiums from previous years;
- Provisions that would have created more onerous verification requirements for those seeking to enroll in Marketplace insurance via special enrollment periods;
- Provisions that would have established new, more restrictive income verification and tax reconciliation requirements for people applying for premium tax credits; and
- Policies that would have allowed insurers more leeway to reduce the actuarial value of their health plans.
The court's ruling “stays” these provisions (some of which were slated to go into effect on August 25) while the litigation continues. The Administration may choose to appeal the ruling, and/or to provide new guidance to states. NBDF will provide additional updates as we learn more.
Short Term Limited Duration Insurance
NBDF has long advocated against “junk insurance” such as short-term limited duration insurance (STLDI), low quality health coverage which is exempt from many ACA consumer protections. STLDI was more strictly regulated under the Biden Administration but in early August, the Departments of Labor, HHS, and Treasury issued a statement saying the agencies will not prioritize enforcing the Biden-era rules, and in fact the agencies intend to undertake rulemaking to loosen the requirements governing STLDI. NBDF will closely track any new policies related to STLDI and will oppose any loosening of regulations that will make these plans more readily available to consumers.
NBDF also recently joined a letter led by the Partnership to Protect Coverage, opposing changes to STLDI coverage rules in Idaho.
State:
Colorado: The legislature went into special session Aug. 21 to address a significant budget shortfall for 2026. Rep. DeGraaf introduced a bill that would legalize the use Alternative Funding Programs in state-regulated health plans. NBDF worked with the Chronic Care Collaborative and other patient advocacy organizations to oppose the bill. Later that day the House Health and Human Services Committee rejected the proposal 4-8.
Michigan: Michigan’s House of Representatives released the legislature’s budget for FY 2026, with significant cuts to the State’s Medicaid program and moving up the initiation of work requirements to January 2026. Although the Children’s Special Healthcare Services (CSHS) program for bleeding disorders has been largely unaffected, work requirements will likely lead to loss of coverage for patients.
Wisconsin: The Senate Health Committee approved SB 203 on Aug. 21. SB 203 is a PBM reform bill that includes language banning the use of copay accumulator adjuster policies. NBDF testified before the committee in support of the bill on May 28.
