During legislative session, NHF's chapter network, public policy staff, and the bleeding disorders community at large has been hard at work advocating across the United States! For the month of February, here are some advocacy and policy highlights from the beginning of this year:

National All Copays Count Coalition Update: The national All Copays Count Coalition is tracking and supporting copay accumulator adjustment bills in 15 states and DC so far this session: Arkansas, California, Florida, Massachusetts, Missouri, Michigan, North Dakota, New Mexico, Oregon, Ohio, Pennsylvania, South Carolina, Texas, Utah, and Wisconsin. 

Introduction of HR 830: HELP Copays Act introduced Feb. 6.  Reps. Carter (R-GA), DeGette (D-CO), Barragan (D-CA), Clarke (D-NY), Fitzpatrick (R-PA), Miller-Meeks (R-IA), Watson Coleman (D-NJ). 

This legislation would ban co-pay accumulator adjuster policies on the federal level, along with state legislation that has been pursued by the bleeding disorders community and our partners across the United States.  You may find Rep. Carter and Rep. Barragan’s press release on this bipartisan legislation here: Carter, Barragán, Miller-Meeks, and DeGette introduce bipartisan legislation to ensure copay assistance counts for patients : U.S. Representative Buddy Carter (house.gov) 

Washington Days 2023 - March 8-10th!  We are proud to announce that we will have a total of 400 advocates attend NHF’s 2023 Washington Days! 

Representing over 35 states across the country, bleeding disorders advocates will be in Washington DC on March 8-10th for a series of training sessions and visits with representatives on Capitol Hill, supporting the HELP Copays Act, America’s HTC network, CDC and HRSA funding and issues affecting the bleeding disorders community. Be on the lookout on NHF’s social media for updates on our Capitol Hill visits, advocacy sessions and awards, and much more!  

NHF Submits Comments Regarding 2024 Notice of Benefit and Payment Parameters: In February, the All Copays Count Coalition sent out a media release expressing its disappointment that the Centers for Medicare and Medicaid Services failed to prohibit the use of copay accumulator adjustment policies by health insurers in the draft 2024 NBPP.  

Each year, the Department of Treasury, Centers for Medicaid Services (CMS) and the Department of Health and Human Services (HHS) release annual rule governing core provisions of the ACA, including the operations of state marketplaces and standards of insurers. This is the chance each year for patient advocacy organizations to make their voices heard to insurers, Medicare, Medicaid, and HHS. It is important that we highlight the needs of the bleeding disorders community in each year’s NBPP rulemaking determinations. 

State Policy Updates: 

Utah: The Utah ACCC went to the Capitol Friday, January 20 to seek support for S. 184 (Sen. Bramble), a bill to ban the use of copay accumulator adjustment policies in state-regulated health insurance plans. Patient groups also testified on the bill at a Feb. 15 Senate Business and Labor Committee hearing, where it was subsequently approved. The bill passed the Senate shortly after and awaits consideration in the House.  

Missouri All Copays Count Coalition: Gateway Hemophilia Association and Midwest Hemophilia Association hosted a state Advocacy Day Feb. 7 along with other patient advocacy groups to seek support for HB 422 and SB 269, measures that would prohibit the use of copay accumulator adjustment policies.

Rep. Dale Wright, sponsor of HB 422, joined the group for dinner and advocacy training Feb. 6 and discussed his support of the legislation and his interest in health care policy. By the end of their Advocacy Day the groups had secured two new co-sponsors on HB 422. HB 422 is scheduled for a vote in the House Health and Mental Health Committee Feb. 27.

Wisconsin All Copays Count Coalition: Great Lakes Hemophilia Foundation joined with other members of the Wisconsin All Copays Count Coalition and Sen. Andre Jacque and Rep. Paul Tittl in a press conference Feb. 7 announcing the introduction of legislation banning the use of copay accumulator adjustment policies. The bill currently has 30 cosponsors.

Hawaii: The Hawaii Chapter of NHF hosted an Advocacy Day Feb. 13 and met with key legislators including Senate Majority Leader Ronald Kouchi and House Minority Leader Lauren Matsumoto.

Kyra Calbero and longtime chapter volunteer advocates Jennifer and Lehue Chun, and Mike Pieklo and his family discussed the importance of access to hemophilia therapies including gene therapy and advocated for legislation enabling the state to enter into interstate medical licensing compacts (SB 674, HB 666).

Oklahoma: On Monday, February 13th, the Oklahoma chapter held their state advocacy day at the State Capitol. Community members met with state legislators to thank them for passing HB 2678 in 2021 and HB 3495 last year, which made sure that all consumers in state- regulated health plans have full access to 3rd-party help with copays and deductibles. Advocates requested that state legislators have proper oversight to ensure the Insurance dept is enforcing copay accumulator law. 

West Virginia: On Thursday, February 16th, advocates from the West Virginia chapter of NHF and the NHF public policy team met with Delegates and Senators from West Virginia’s Health Committee’s, celebrated Governor Justice’s March Bleeding Disorders Awareness Month Proclamation, and met with the State Medicaid Office. 

Advocates advocated for West Virginia’s Rare Disease Advisory Council, which is now going to Governor Justice for signature, fought against co-pay maximizer legislation, and educated legislators about bleeding disorders and Medicaid redeterminations as a result of the end of the Public Health Emergency. 

Finally, advocates met with Brian Thompson, Pharmacy Director of West Virginia Medicaid, to discuss gene therapy, bleeding disorders treatment, and ways to collaborate with Medicaid.  

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