Government Relations Update – March 2024

Federal: NBDF’s 2024 Washington Days was held March 6-8.  NBDF is grateful to the more than 400 volunteer advocates from forty-four states who participated in the 231 meetings with Members of Congress and the state advocacy training.  This year’s priority issues are the HELP Copays Act (HR 830/S 1375), appropriations for NIH and CDC programs, and federal action addressing commercial health plans’ narrow prescription drug formularies and exclusions.


California: NBDF participated in the Hemophilia Council of California’s Advocacy Day March 18.  Advocates urged legislative support for AB 2180, the copay accumulator adjuster legislation, and full funding for the California Childrens Services program (CCS) and the Genetically Handicapped Persons Program (GHPP).

Maryland: On March 31, the House Health and Government Operations Committee passed SB 595, the State’s copay accumulator adjuster policy ban. The Maryland All Copays Count Coalition opposes the House version of the bill (HB 879), which provides less protection against accumulator adjusters for patients.

Michigan: The Hemophilia Foundation of Michigan (HFM) was in Lansing on March 20th and 21st to advocate for a hearing on HB 4719, the State’s copay accumulator adjuster policy ban legislation. HFM and NBDF also participated in a press conference for HB 5339, which provides safeguards for “Step Therapy” or “Fail First” policies, in addition to advocacy for a Rare Disease Advisory Council and funding for the Children’s Special Health Care program.  

Minnesota: The Hemophilia Foundation of Minnesota and the Dakotas participated in a Rare Disease Advocacy Day March 5 in St. Paul with thirteen other patient advocacy organizations.  Priority issues for the day were full funding for the Rare Disease Advisory Council (HF 3841), medical debt relief (HF 4100), and prior authorization reform (HF 3578).

New York: Members of the New York State Bleeding Disorders Coalition (NYSBDC) attended the Capitol in Albany on March 18 to advocate for “Step Therapy” or “Fail First” guardrails (A 901) and pre-authorization reform (S 3400/A 7268). Assemblymember John McDonald, a pharmacist and longtime champion for the bleeding disorders community, also attended the NYSBDC issue training and addressed advocates in Albany.  

North Dakota:  NBDF and the Bleeding Disorders Alliance of North Dakota held several meetings with last year’s sponsor of HB 1413, the copay accumulator adjuster ban, and other members of the All Copays Count Coalition to discuss introduction of similar legislation in the 2025 session.  On April 25 the Legislative Management’s Employee Benefits Programs Committee meets to review proposed 2025 legislation related to state employee retirement, health, and retiree health benefits.  The committee may decide to analyze chosen bills for their fiscal impact.  

Ohio: Members of the Ohio Bleeding Disorders Council (OBDC) were at the Capitol on March 22nd for a member breakfast and to educate members on the Children with Medical Handicaps program (CMH) and HB 177, the State’s ban on copay accumulator adjuster policies. OBDC members will be back in the Capitol on April 9th to advocate for HB 177.  

Oregon: The state Senate unanimously passed HB 4113, a ban on copay accumulator adjuster policies, March 5.  The measure now goes to Gov. Kotek for her signature.  The state legislature adjourned for the year March 8.

Rhode Island: SB 2720, the State’s ban on copay accumulator adjuster policies, passed the Senate Floor on Thursday, March 28. The House Bill, HB 8041, is expected to have a hearing in the House Committee on Corporations soon.  

Vermont: The Vermont House of Representatives unanimously passed HB 233, a ban on copay accumulator adjuster policies, on March 21. The bill now goes to the Senate Committee on Health and Welfare for consideration.  


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