Government Relations Update – April 2024 


Affordable Care Act:  The Department of Health and Human Services on April 26 released the final rule on Section 1557 of the ACA that will strengthen non-discrimination protections in health care. 

Copay Accumulator Adjusters:  The HELP Copays Act (HR 830) has seventeen cosponsors in the Senate and 130 House cosponsors, an increase of 19 cosponsors since NBDF’s Washington Days. 

The Department of Health and Human Services released the 2025 Notice of Benefit and Payment Parameters which sets the rules for most commercial insurance plans.  The 2025 NBPP includes a ban on copay maximizer policies for state regulated Affordable Care Act marketplace plans beginning in 2025.  However, the notice did not address HHS enforcement of the 2020 NBPP that bans copay accumulator adjuster polices, nor did it extend the maximizer ban to patients on federally regulated employer self-funded plans. 

Hemophilia Alliance Hill Day:  NBDF staff participated in the Hemophilia Alliance’s Hill Day in Washington, DC April 18.  Priority issues for the Alliance were Alternative Funding Programs and the federal 340B drug discount program. 


California: The Assembly Health Committee passed AB 2180 unanimously April 25.  The bill now goes to the Assembly Appropriations Committee where it is expected to receive a hearing in the next two weeks. 

Maryland: SB 595 was unable to move forward this session due to amendments in the House that would remove high deductible health plans from protection against copay accumulator adjuster policies. 

Missouri: Senator Bernskoetter's SB 844 proposed an important adjustment in health benefit plan calculations. It mandates that health carriers or pharmacy benefits managers factor in any expenses borne by enrollees for medications lacking generic substitutes when tallying overall out-of-pocket maximums or cost-sharing obligations. While currently on the senate calendar, the bill faces delays due to budgetary deliberations. With less than two weeks left before sine die, the Missouri legislature must address this and other pending matters. Given the evolving nature of legislative proceedings, we remain vigilant for any updates. 

Mississippi:  On April 16, Mississippi became the 28th state to create a Rare Disease Advisory Council with the Governor’s signature on SB 2156. 

New Hampshire:  Following Senate passage last month, SB 354, the state’s copay accumulator legislation, held a hearing in the House Commerce and Consumer Affairs Committee on April 30.  Advocates from the New England Hemophilia Association (NEHA) testified before the committee.  

New York: Members of the New York State Bleeding Disorders Council joined the EveryLife Foundation in Albany on April 16 to advocate for expanded access to genetic counseling and access to specialist provider care for rare diseases.  

Ohio: Advocates from the Ohio Bleeding Disorders Council (OBDC) held their advocacy day in Columbus at the beginning of April for HB 177, the state’s copay accumulator legislation. OBDC held a “Lunch and Learn” with legislators from across Ohio to discuss the legislation, bleeding disorders, patient experiences and the importance of copay assistance.  

Oregon:  NBDF and Pacific Northwest Bleeding Disorders staff attended two town halls hosted by the Oregon Prescription Drug Affordability Board. 

North Dakota:  The legislature’s Employee Benefits Program Committee held a meeting April 26 to review draft health care legislation for consideration in the 2025 session.  The committee selected Rep. Karls’ draft copay accumulator adjuster bill for fiscal analysis.  The Bleeding Disorders Alliance of North Dakota and NBDF have been working with Rep. Karls to develop the bill for the next session. 

Pennsylvania: Advocacy Ambassadors from the Western and Eastern Pennsylvania Bleeding Disorders Foundation’s will be in Harrisburg on May 7th to advocate for SB 372, the Commonwealth’s copay accumulator legislation, HTC funding in the Commonwealth’s budget, and menstrual product access for Women Girls and People with the Potential to Menstruate.  

Rhode Island: HB 8041, the state’s copay accumulator legislation, was sent for a legislative study on April 11.  Members of the New England Hemophilia Association (NEHA) and patient advocacy groups across New England will be gathering at the Rhode Island State Capitol on May 2 to advocate for the bill and step therapy legislation.  

Vermont: H 233, the state’s copay accumulator legislation, has passed the Senate Health and Welfare Committee and now awaits a vote in the Senate Finance Committee.  H 233 must pass through the Finance Committee before moving to the Senate floor for consideration.