Government Relations Update – February 2024 

Federal: NBDF’s Washington Days is March 6-8. NBDF volunteer advocates will be on Capitol Hill on March 7 to advocate for the HELP Copays Act, fighting narrow formularies and restrictions from insurers and PBM’s, and stressing to Members of Congress the importance of the Hemophilia Treatment Center (HTC) network and funding.  Real time updates on Washington Days will be posted to NBDF’s social media channels.  


California: The Hemophilia Council of California hosted the inaugural meeting of the Rare Disease Access Coalition Feb. 29.  More than thirty attendees participated in the event which included sessions on access to gene and other novel therapies, the state’s Office of Health Care Affordability, current legislation impacting the rare disease community, and opportunities for patient groups to collaborate on public policy. 

Colorado: NBDF staff continued to work with the Chronic Care Collaborative of Colorado to negotiate changes to SB 077 with the bill’s sponsor.  The measure would allow PBMs and health insurers to implement copay maximizer programs in state-regulated insurance plans.    

Maryland: On Feb. 27, members of the bleeding disorders community testified to the Senate Finance Committee on SB 595, the state’s copay accumulator bill. The Senate Finance Committee will be voting on the bill in the near future before going to the Senate floor for a vote. 

Missouri: HB 1628, Missouri’s copay accumulator bill, was referred to the House Health and Mental Health Committee.  The bill is expected to pass the committee on Monday, March 4th.  

North Dakota:  Staff from the Bleeding Disorders Alliance of North Dakota, NBDF, and the National Psoriasis Foundation met with state Rep. Karen Karls Feb. 27 to discuss opportunities and challenges to advancing a copay accumulator adjuster bill in the 2025 session. 

Oklahoma: On Feb. 26, members of the Oklahoma Hemophilia Foundation had their state Advocacy Day.  Advocates promoted the passage of SB 1772 sponsored by Senator Carri Hicks which will establish a rare disease advisory council. The bill is currently in the Health and Human Services committee awaiting a hearing.  

Oregon: The House of Representatives unanimously approved HB 4113, a ban on copay accumulator adjuster policies, Feb. 26.  The Senate Health Care Committee approved the bill Feb. 28.  A Senate floor vote is expected March 4. 

NBDF signed a letter with other patient groups to House and Senate Health Care Committee chairs expressing concern about the implementation of the state’s Prescription Drug Affordability Board and urging the legislature to conduct more rigorous oversight of the panel. 

South Carolina: On Feb. 28, the South Carolina Hemophilia and Bleeding Disorders Advocacy Coalition had their state Advocacy Day where they championed their copay accumulator adjuster bill (HB 3618).  Community members were successful in adding twenty-two cosponsors to the measure.  Advocates have scheduled meetings with legislators this coming week to continue soliciting support for HB 3618. 

Utah: NBDF participated in the American Cancer Society - Cancer Action Network’s Advocacy Day in Salt Lake City Feb. 2.  The event emphasized support for SB 152 which would ban the use of copay accumulator adjuster policies.  Last week the bill was withdrawn by the sponsor over proposed amendments from insurance plans.  The amendments greatly weakened the bill and included language allowing health plans and PBMs to implement copay maximizer programs. 

Vermont: H 233, Vermont’s copay accumulator bill, has passed the Vermont House Committee on Healthcare and has moved to the Ways and Means Committee ahead of a House floor vote. The bill will be delivered to the Senate for consideration following a floor vote.  

Washington: Washington Medicaid’s Drug Use Review Board was scheduled to review Hemgenix and Roctavian Feb. 28, but did not get through the meeting’s lengthy agenda. The DUR is expected to review them at its next quarterly meeting. 

West Virginia: HB 5379, which restricts insurers and PBM’s use of copay maximizers and alternative funding programs (AFP’s), passed the House of Representatives 97-0 on February 28th. The bill now goes to the Senate for a vote.  

Wisconsin: AB 773, a PBM reform bill that included a copay accumulator adjuster policy ban did not make it on to the hearing agenda of the Feb. 14 Assembly Committee on Health, Aging, and Long-Term Care.  This effectively ended the bill’s chances for 2024.