Federal Updates:

Washington Days Recap: Nearly 400 volunteer advocates attended Washington Days March 8-10th and participated in 235 meetings with Members of Congress and staff.  The focus of this year was soliciting cosponsors for H.R. 830, the HELP Copays Act, and securing level funding for the federal hemophilia programs.

H.R. 830 - Federal Copay Accumulator Legislation Update: The HELP Copays Act (H.R. 830) is now up to 29 co-sponsors, representing 18 States, Puerto Rico and Washington, DC.  As Congress heads into appropriations season, we continue to monitor the legislation and advocate for further members to sign onto H.R. 830, along with a companion bill in the Senate. Thanks to all the advocates in the bleeding disorders community, the HELP Copays Act is amongst several pieces of legislation being considered by the 118th Congress regarding access to healthcare and treatment. 

Safe Step Act Introduced: The Safe Step Act (S.652) was introduced in the Senate by Senator Lisa Murkowski (R-AK), and is currently in the Senate Committee on Health, Education, Labor, and Pensions (Senate HELP Committee). This legislation would require group health plans to provide exception processes for step therapy protocols in specified cases, ensuring access to recommended treatment without unnecessary barriers. NHF continues to support this legislation alongside our patient advocacy partners.

State Updates:

All Copays Count Coalition Update: There is now copay accumulator adjuster legislation in eighteen states and the District of Columbia. New Mexico became the latest state to pass a CAAP bill (SB 51). Bills in Colorado, Missouri, North Dakota advanced in the legislative process. HB 1413 in North Dakota has passed both the House and Senate and will be considered by a conference committee.    

California: The Hemophilia Council of California hosted its Advocacy Day March 21 in Sacramento.  More than three dozen advocates met with legislators to ask for their support for a copay accumulator adjuster policy ban (AB 874) and funding for California Children Services and the Genetically Handicapped Persons Program.   

Michigan: On Wednesday, March 22nd, advocates from the Hemophilia Foundation of Michigan took to the Capitol to meet with legislators about copay accumulator adjusters in anticipation of the introduction of a bill to ban these practices. 

Missouri: HB 442 was voted out of the Health and Mental Health committee and sent to the House floor where it passed with a vote of 117-38 and is now on to the senate. 

New York: On Monday, March 20th, advocates from the New York State Bleeding Disorders Coalition, representing all bleeding disorders chapters in New York State, advocated in Albany for step therapy and prior authorization reform.  

A. 901 would simplify step therapy protocols for chronic conditions, such as bleeding disorders, and has already passed the New York State Senate. Advocates also talked to legislators about prior authorization reform, which will be taken up by the legislature after the state budget. Additionally, advocates were recognized on the Senate floor by Senator Tim Kennedy (D-Buffalo) to mark March as Bleeding Disorders Awareness Month. 

Ohio: On Friday, March 17th the Ohio Bleeding Disorders Council held a legislative breakfast for legislators and staff in the Ohio State Capitol in Columbus to educate legislators about bleeding disorders and the impact copay accumulator adjusters on those with chronic conditions. 

OBDC will be back in the Capitol on April 21st to meet with legislators and staff on copay accumulator legislation, and host an advocacy retreat Saturday, April 1st in Columbus. 

Oregon: Pacific Northwest Bleeding Disorders held its Advocacy Day in late February in Salem, Oregon.  Approximately 25 advocates spent the day in meetings with their respective legislators to seek support for S.B. 565, which would ban the use of copay accumulator adjustment policies.  Unfortunately, the bill was pulled from the agenda of a Senate committee work session March 27.  The action likely ended the bill’s chances for the 2023 session. 

Pennsylvania: Both Eastern and Western Pennsylvania Bleeding Disorders Foundation’s held an advocacy ambassador retreat in Bedford Springs, Pennsylvania from March 3-5th. Preparing for Washington Days and upcoming action in Harrisburg on copay accumulator adjusters, the retreat of the State’s advocacy ambassadors participated in sessions on copay accumulators and maximizers, photo and storytelling sessions, and holding meetings with legislators both in-district and in offices in Harrisburg and Washington. 

Puerto Rico: Asociación Puertorriqueña de Hemofilia y Condiciones de Sangrado held their advocacy day at the Capitol on March 21st to discuss with lawmakers introducing legislation to create a registry and further access to health care for the blood disorder community on the island. 

South Carolina: The Bleeding Disorders Association of South Carolina held their state advocacy day on March 1st, meeting with both House and Senate members requesting support for HB 3618, South Carolina’s copay accumulator legislation.  HB 3618 was referred to the committee on Labor, Commerce and Industry and has not been set for a hearing yet. HB 3618 currently has 19 co-sponsors. 

Texas: Texas’ copay accumulator bill, HB 999, was passed out of the House Health Care Reform select committee with six co-sponsors and will be sent to the committee on calendars to be heard on the House floor for a vote. 

Wisconsin: A dozen volunteer advocates with the Great Lakes Hemophilia Foundation participated in the chapter’s annual Advocacy Day in Madison March 1 seeking support for S.B. 100 which would ban copay accumulator adjustment policies by payers in the state.  S.B. 100 has more than 40 cosponsors. 

Many more state updates are to come! Be on the lookout next month for further updates! Follow NHF on social media or go to NHF's advocacy page for more information.