Federal
2024 Election & What to Expect for the End of the Year
Beginning in 2025 with the 119th Congress and the January 20th Presidential Inauguration, Republicans will take control of the White House and the two chambers of Congress, the Senate flipping from Democratic control and the House remaining Republican. President-elect Trump has already begun shaping his second administration – an effort far more organized than after his first win. With a Republican trifecta – control of the White House, House, and Senate – the President’s agenda will have a green light in moving forward. This will include approving appointments, setting legislative priorities, and minimal Congressional oversight of the Executive Branch. Given the incredibly tight margins in both the House and the Senate, however, most legislation will need bipartisan support.
And while there are still three weeks left in the 118th Congress, it is unclear what will get done. It is looking more and more likely that rather than addressing fiscal year 2025 funding, Congress will pass another short-term funding bill to push the deadline into 2025 giving Republicans more control over what gets included in a final appropriations package.
Dear Colleague letter on non-EHB rulemaking gets 32 signatures
The NBDF-led effort to send a Congressional sign-on letter, led by Reps. Carter (R-GA-01) and Barragán (D-CA-44), asking the Departments of Health and Human Services, Labor, and Treasury (tri-agencies) to issue promised rulemaking to protect all patients from copay maximizers gained 32 signatures. The 2025 Notice of Benefit and Payment Parameters (NBPP) included a provision which will effectively ban the use of copay maximizers by individual and small group plans. But the NBPP does not apply to large group and self-insured plans. To align standards across all insurance markets, the tri-agencies in April announced they would undertake additional rulemaking to extend this provision to all non-grandfathered plans. But the tri-agencies have not yet issued the promised rule. The letter to the tri-agencies requests that they issue this proposed rule as soon as possible.
NBDF’s Insurance and Reimbursement Conference
On November 13 and 14, NBDF hosted its annual virtual Insurance and Reimbursement Conference. The topics covered included an election recap, 340B program policy updates, Medicaid access, gene therapy, alternative funding and what the bleeding disorders community needs to know about Medicare.
NBDF Joins Coalition Comments on NBPP
NBDF signed on to two letters, one led by the Partnership to Protect Coverage (PPC) and the other by the All Copays Count Coalition (ACCC), in response to the proposed Notice of Benefit and Payment Parameters (NBPP) for 2026. The PPC letter commented on a number of issues with a focus on the importance of protecting consumers. The ACCC letter focused on the annual threshold for out-of-pocket spending in 2026 and the fact that the proposed rule did not address the issue of copay accumulator adjustor programs. We expect to see the final NBPP for 2026 issued before the end of the year.
Telehealth Prescribing for Controlled Substances Extended for 12 More Months
The Drug Enforcement Administration and the Department of Health and Human Services recently announced a third temporary extension of telemedicine prescribing flexibilities for controlled substances. The flexibility first started as a result of the COVID-19 pandemic and is now set to expire at the end of 2025.
State
Michigan: The Michigan Rare Disease Advisory Council (RDAC) held its first meeting on November 8th. NBDF and the Hemophilia Foundation of Michigan supported the legislation that was sponsored by Rep. Jason Harris (Ann Arbor), a champion for the bleeding disorders community. HFM Executive Director, Sue Lerch, serves on the RDAC. The RDAC meets quarterly, and their next meeting will be live and streamed online on January 22nd from 10am-12pm EST.
New Jersey: The Hemophilia Association of New Jersey (HANJ) has introduced copay accumulator legislation, S 3818, in the state Senate. Senate President Nicholas Scutari sponsored the legislation, which will receive a hearing in the Senate Commerce Committee in December.
Indiana: NBDF has worked with Hemophilia of Indiana and grassroots advocates to introduce copay accumulator legislation in the state legislature for the 2025-2026 legislative session.
Oregon: The state Department of Consumer and Business Services’ Drug Price Transparency Project is releasing its annual drug pricing report and holding a public hearing December 4 at 10:00 a.m. in Salem. Public testimony in-person and online will be accepted.
