Government Relations Update – August 2024
Federal
Medicaid Unwinding
As part of the COVID-19 public health emergency (PHE), state Medicaid programs were not allowed to conduct the typical annual re-determination process for beneficiaries. Stated simply, state Medicaid programs could not remove anyone from their rolls. This policy ended, however, and between February 1, 2023, and May 31, 2024, every single person enrolled in Medicaid – approximately 90 million people – had to have their eligibility redetermined (this is known as the Medicaid Unwinding). As of late summer 2024, all but five states have completed their initial redeterminations. Coverage losses have been large: according to KFF, almost 25 million Americans were disenrolled nationally, with wide variation in disenrollment rates across the states.
The Centers for Medicare and Medicaid Services (CMS) created a temporary special enrollment period (SEP) to help people who are no longer eligible for Medicaid or CHIP transition to Marketplace coverage in states using HealthCare.gov. The SEP will run through November 30, 2024, which will overlap with the November 1 start of marketplace open enrollment.
Medical Debt
NBDF joined other patient groups through the Partnership to Protect Coverage (PPC) in a letter to the Consumer Financial Protection Bureau (CFPB) in support of a proposed rule which, if finalized, will prohibit creditors from obtaining and using individuals’ medical debt information when making credit determinations. Surveys have found that an estimated 100 million people in the US are currently in debt because of medical and dental bills. The letter to the CFPB made suggestions on how to further protect consumers from medical debt. Over one thousand commenters made public submissions on the CFPB docket; the agency will have to consider those submissions before publishing a final rule.
ACA Premium Tax Credits
NBDF joined dozens of other Partnership to Protect Coverage (PPC) organizations in a letter to Congressional leadership urging a permanent extension of the Affordable Care Act’s (ACA) enhanced premium tax credits (APTCs) before they expire at the end of 2025. The ACA established the credits to help lower the costs of health insurance purchased in the Marketplaces. Since the start of the COVID-19 pandemic, Congress has acted twice to make these credits more generous – allowing more people to benefit and allowing people to receive more help – but only temporarily. The enhanced APTCs are now set to expire at the end of 2025, but Congress must act well before then to accommodate insurer rate-setting. Permanently extending these critical subsidies is essential to prevent a spike in premiums and consequent loss of insurance coverage for millions of people. In addition to the letter, NBDF has met with Congressional offices on this issue.
NIH Reform
NBDF responded to a request for comment from Republican members of the House Energy and Commerce Committee regarding a proposed framework to reform the National Institutes of Health (NIH). NBDF’s letter focused on the important work done by the NIH and how NIH-supported research has improved the longevity and quality of life of people living with bleeding disorders. NBDF cautioned against any restructuring that would harm research on rare conditions or weaken efforts to address disparities and gaps in care impacting underserved populations. At this time it is unclear what, if anything, will come from the proposed framework, but NBDF continues to look for opportunities to highlight the critical work of the NIH.
State
California: AB 2613, which would create a Rare Disease Advisory Council in California, passed the state Senate Aug. 26 and now goes back to the Assembly for concurrence. The bill passed the Assembly the first time unanimously May 21. NBDF has signed a letter with other patient groups expressing support for the bill.
SB 966, a bill to regulate the practices of Pharmacy Benefit Managers, is poised to pass the state Assembly after approval by the Appropriations Committee Aug. 15. The bill was amended on the Assembly floor and awaits a final vote. The bill passed the Senate unanimously May 19.
Michigan: The Hemophilia Foundation and the Michigan All Copays Count Coalition (MACC) have called on Speaker of the House Joe Tate and Insurance and Financial Services Committee Chair Brenda Carter to hold a hearing on HB 4719, Michigan’s copay accumulator legislation, as the legislature comes back for the final weeks of legislative session.
Minnesota: The state Department of Insurance has announced it will enforce the federal 2020 Notice of Benefit and Payment Parameters’ prohibition on the use of copay accumulator adjuster policies for prescription drugs that do not have a generic alternative for Affordable Care Act marketplace health plans available in 2025.
Oregon: At its Aug. 21 meeting the state Prescription Drug Affordability Board heard presentations from consultants on issues related to the development of Upper Payment Limits, from staff on the input received from seven different groups of stakeholders at the Board’s July 24 meeting and reviewed draft criteria for the selection of drugs to be considered for affordability reviews.
Bleeding Disorders Conference:
NBDF’s Public Policy & Access team is hosting four sessions at the Bleeding Disorders Conference September 12-14th in Atlanta, GA. Please join us for sessions discussing the latest public policy developments on the State and Federal level, blood and product safety initiatives, specialty care, patient financial assistance and more.
Friday, September 13th:
Navigating Insurance: Getting the Care You Need (10:45 a.m. – 11:45 a.m.)
GWCC – Meeting Room B306 – Level 3
Speakers: Justin Nelson-Deering, Latrice Daniel
Description: Changes in federal health care policy over the past five years have led to a more complicated commercial insurance marketplace for consumers with chronic diseases. In this session you’ll learn how to evaluate your insurance options and avoid insurance products that won’t serve your needs.
Patient Assistance Programs (PAPs) and the Impact of Specialty Care (1:30 p.m. – 2:30 p.m.) GWCC – Meeting Room B306 – Level 3
Speakers: Jenn Noonan; Dave Rushlow
Description: Explore how patient assistance programs are adapting their models to provide more holistic support to underserved patients, going beyond traditional copay assistance. Looking at the unique needs of the bleeding community, learn how PAPs can help address the specific challenges faced by individuals living with bleeding disorders.
Capitol Connection: Federal and State Policy Update (2:45 p.m. – 3:45 p.m.)
GWCC – Meeting Room B306 – Level 3
Speakers: Nathan Schaefer, Johanna Gray, Leslie Brady, Bill Robie, Matt Delaney
Description: An update on the federal and state public policy issues that NBDF and state chapters are focusing on. A brief overview of the November general election.
Treatment Products: Keeping Them Safe and in Supply (4:00 p.m. – 5:00 p.m.)
GWCC – Meeting Room B308 – Level 3
Speakers: Johanna Gray, Nathan Schaefer, Mark Skinner, Matt Delaney
Description: An update on safety and supply issues regarding blood and therapeutic products used by bleeding disorders patients.
