NBDF’s 2nd Hill Day Dedicated to Women and Girls with Bleeding Disorders
On September 16, 2026, approximately 30 advocates took to Capitol Hill for NBDF’s second Hill Day dedicated to women and girls with bleeding disorders. Advocates met with Congressional staff to talk about H.R. 8794, the Fostering Effective Diagnosis and Treatment for Underserved Populations (“FED UP”) with Bleeding Disorders Act. These efforts are so important as NBDF continues to raise awareness for this issue, build a base of support in Congress and seek to advance policy that will reduce some of the many barriers faced by this community.
Wednesday Webinar on Changes Coming to Medicaid
Beginning January 1, 2027, State Medicaid programs must implement “community engagement requirements” (also known as “work reporting requirements) as a condition of Medicaid eligibility for certain adults, aged 19 through 64. On September 9, NBDF’s Wednesday Webinar series covered this topic, what it means for the bleeding disorders community, and what the community, chapters, and HTCs can do now to prepare. If you missed the webinar or want to watch it again, you can access it here.
NBDF Joins Amicus Brief in Support of Lawsuit on Medicaid Work Requirements
NBDF along with 70 other patient advocacy and civil rights groups filed an amicus brief in a lawsuit that challenges the federal government’s rules regarding Medicaid work reporting requirements. The lawsuit, Massachusetts v. Oz, was filed by 26 States last June. The plaintiff States charge that the federal rule sets out a definition of medical frailty that is harsher than and contrary to the language of H.R. 1 and ask the court to invalidate those provisions of the guidance. NBDF and other parties to the amicus brief support the plaintiffs’ position, focusing on the importance of maintaining continuous coverage, particularly for individuals facing serious and complex illnesses.
FDA Roundtable on Strengthening the Supply Chain for Blood Manufacturing
On September 29, the FDA hosted a Roundtable Webinar, Strengthening the Supply Chain for Blood Manufacturing. NBDF had the opportunity to provide brief remarks as part of the event. The remarks focused on the continued importance of maintaining and ensuring the safety of the nation’s blood and plasma supply and called for the reinstatement of the Advisory Committee on Blood and Tissue Safety and Availability.
Administration Announces Removal of 760,000 people from ACA Marketplace Plans
The Trump Administration announced that they removed 760,000 people from ACA Marketplace plans, alleging that those individuals were fraudulently enrolled. The disenrolled individuals had filed no insurance claims; had no record of contacting their insurers about their coverage; had premiums that were fully covered by government subsidies; and did not respond to a request from their insurers in a 30-day timeframe. Some health policy experts, though, questioned whether all the targeted accounts actually involved fraudulent enrollments, and called for greater transparency into the Administration’s processes.
CMS also imposed a temporary registration moratorium for agents and brokers seeking to participate in the 2027 federal marketplace who lack a 2026 exchange agreement. The pause lasts until Feb. 1, 2027, unless CMS lifts it earlier, extends it or modifies it through a subsequent notice.
Changes to Medicaid Eligibility for Immigrants Starting October 1
On October 1, certain categories of legal immigrants will lose access to Medicaid. This includes refugees, asylum seekers, and others, and is a result of a provision included in H.R. 1. In total, more than 250,000 individuals are expected to lose Medicaid coverage as a result of this policy.
State Updates:
California: AB 1887, which places a strict timeline on health plans' use of prior authorizations on prescription drugs used to treat rare diseases, was signed by the Governor.
