Washington Days 2025:
General registration for Washington Days is now open until January 17th. Join bleeding disorders advocates from around the country to advocate for bleeding disorders community access to care priorities in Washington, DC from March 5-7, 2025. Registrations are accepted based upon capacity. Register here: Washington Days | NBDF
Federal:
119th Congress Kicks Off
January 3 was the official start of the 119th Congress. Incoming members were sworn in and Rep. Mike Johnson of Louisiana narrowly held onto his position as Speaker of the House. Rep. Hakeem Jeffries (D-NY-8) secured the support of the Democrats and will continue to serve as House Minority Leader. Republicans hold a razor thin majority in the House which means in order to pass legislation, there will have to be consensus. The division in the Senate is only slightly larger than last Congress with Republicans holding 53 seats and Democrats (plus Independents) holding 47.
Congress Passes Short Term Funding Bill Just Before Deadline
After much back and forth, Congress passed and President Biden signed a continuing resolution that provides funding to keep the federal government open through March 14, 2025. Early versions of the continuing resolution included reforms addressing pharmacy benefit managers (PBMs) and a handful of other policies beneficial to the bleeding disorders community, but these policies were dropped from the final bill. The legislation as passed does, however, extend COVID-era telehealth flexibilities which otherwise would have expired at the end of 2024. These extensions will allow individuals to continue to utilize telehealth services from their home and to use audio-only services. These were only extended through March 31, 2025, so Congress will need to act again soon.
Enroll in a Marketplace Plan by January 15
The open enrollment period (OEP) for ACA Marketplace coverage continues until at least January 15, 2025, in every state except Idaho – and past January 15th in a handful of states.
Pursuant to a rule finalized in May 2024, DACA recipients for the first time became eligible to sign up for ACA insurance during this year’s Marketplace OEP. Nineteen states, however, sued to block that rule and prevailed in court, winning an injunction that blocked enforcement of the rule in their states. But a federal appeals court on December 16th stayed the lower court ruling, once again making it possible for DACA recipients to enroll in ACA Marketplace coverage in all 50 states.
New Medicare Part D Cap to Begin This Year
Long-awaited reforms to the Medicare Part D prescription drug benefit went into effect on January 1, 2025. Out-of-pocket costs for Part D-covered prescription drugs are now capped at $2,000/year for Medicare beneficiaries. Additionally, Medicare enrollees can opt into the Medicare Prescription Payment Plan to spread out their Part D drug costs over the course of the calendar year. (As a reminder, infused and injected bleeding disorders treatments are covered by Part B and therefore fall outside the scope of the Part D reforms.) People who anticipate facing high out-of-pocket costs for their Part D drugs may wish to check out this Medicare calculator to determine whether the Medicare Prescription Payment Plan makes sense for them.
DACA Recipients ACA Insurance Eligibility Struck Down in 19 States
On December 23rd, the 8th Circuit Court of Appeals vacated its stay and allowed a previously blocked lower court ruling to go into effect. As a result, individuals under the Deferred Action for Childhood Arrivals (DACA) program are barred from purchasing health insurance under the Affordable Care Act marketplace in 19 states.
The States in which this court ruling effects are Alabama, Arkansas, Florida, Idaho, Indiana, Iowa, Kentucky, Missouri, Montana, Nebraska, New Hampshire, Ohio, South Carolina, South Dakota, Tennessee, Texas, and Virginia.
State:
Massachusetts: During the final days of the 2023-24 session, the General Court failed to move forward the Commonwealth’s copay accumulator adjuster language in their omnibus PBM bill. The General Court opted to approve a study on third party copayment assistance and patient out-of-pocket costs.
New Jersey: On December 12th, S. 3818, New Jersey’s copay accumulator adjuster legislation, passed the state Senate Commerce Committee with a vote of 5-0. The legislation now heads to the Senate Budget and Appropriations Committee. The Hemophilia Association of New Jersey (HANJ) is leading this effort, and HANJ’s Executive Director, Stephanie Lapidow, testified in support of the legislation in Trenton.
Utah: On Nov. 20th the Judiciary Interim Committee held a hearing on Rep. Birkeland’s draft legislation banning the use of copay accumulator adjuster policies. The bill received a favorable vote of 11-2 but needed a unanimous vote to advance to the floor of the House of Representatives as a committee-sponsored bill.
