Federal:
Action Alert on H.R. 1 (Budget Reconciliation): As of July 1, 200 bleeding disorders advocates had taken more than 300 actions to contact Members of Congress in response to NBDF’s Grassroots Action Alert on the “One Big Beautiful Bill”.
Budget Reconciliation Update
Latest news: H.R. 1 passed the Senate and House last week and was signed by the President.
In June, the U.S. Senate began its own work on the “mega-bill” that seeks to use savings from federal health programs to advance the President’s tax, border, and defense policy priorities. The earlier, House-passed version of the legislation made deep cuts to the Medicaid program and destabilizing changes to Marketplace coverage. Senate committees in June took some of these policies even further. As we go to press, it is unclear whether the Senate will be able to pass a bill by its self-imposed deadline (before July 4th). What is clear is that any legislation along the lines of either the House or the Senate bill would cause widespread coverage losses among the American public generally and within the bleeding disorders community.
Medicaid cuts in the budget reconciliation bills
• The House and Senate bills would require all states, by December 31, 2026, to implement work reporting requirements for their Medicaid expansion population (non-disabled adults ages 19-64) – but the Senate bill goes even further than the House version by applying the work reporting requirements to parents of children above the age of 14.
• The Senate bill, like its House counterpart, would apply mandatory cost-sharing requirements to the Medicaid expansion population. Beginning in October 2028, states would be required to impose cost-sharing of up to $35 per item or service, capped at 5% of the individual’s income. Providers could at their option reduce or waive cost-sharing on a case-by-case basis.
• Both bills would require more frequent eligibility checks on Medicaid enrollees, requiring renewals every six months rather than annually, and the Senate bill would repeal (rather than delay, as per the House bill) certain Biden-era rules designed to streamline and facilitate enrollment.
The Senate legislation also goes further than the House bill in targeting Medicaid expansion states with devastating cuts to the mechanisms (i.e., state provider taxes) that states use to fund their share of Medicaid program costs. (Whereas the House bill prohibited all states from establishing new provider taxes, or increasing the rates of existing taxes, the Senate bill reduces provider tax rates in expansion states only.) This provision has caused widespread concern among Senate moderate Republicans.
Affordable Care Act (ACA) Marketplace cuts in the budget reconciliation bills
The Senate bill, like the House version, contains numerous policies that would make ACA insurance more expensive and less accessible: fewer and shorter enrollment periods, less eligibility for advance premium tax credits (APTCs), more stringent eligibility verification requirements, and almost no pathway to coverage for many groups of lawfully present immigrants.
As on the House side, a notable feature of the Senate bill is something it does NOT do. The bill does NOT extend the enhanced APTCs for ACA insurance, which have been in place since 2022 and are set to expire at the end of 2025. If the enhanced APTCs are not extended, premiums for 2026 ACA health insurance are expected to increase by over 75% on average. Lower-income and older enrollees, as well as people living in non-Medicaid-expansion states, would face the highest premium increases, and nationwide up to 5 million people are projected to lose coverage.
Next steps and NBDF actions
The Senate Parliamentarian, in rulings released June 26th, advised that many of the restrictive Medicaid and ACA policies contained in the Senate bill cannot be enacted by reconciliation, but would instead be subject to a 60-vote threshold. It seems likely that Senate Republicans will try to rework some or all of those provisions to meet the Parliamentarian’s requirements. NBDF has led multiple sign-on letters for the bleeding disorders community opposing these cuts. The latest letter was sent to the entire Senate on June 18. NBDF also joined multiple letters and statements in opposition to the bill as part of the Partnership to Protect Coverage. And, most importantly, NBDF has offered or joined in various campaigns to elevate the voices of people living with bleeding disorders and the providers who treat them.
Administration Finalizes Harmful Changes to Marketplace Plans
On June 20, the Centers for Medicare and Medicaid Services released a final rule, the Marketplace Integrity and Affordability rule, which will bring harmful changes to marketplace plans beginning as soon as August 25. Beginning on August 25, DACA (Deferred Action for Childhood Arrivals) recipients will no longer be eligible for Marketplace plans or coverage under the Basic Health Program (BHP), putting these individuals at grave risk of losing their insurance before the year’s end. Also beginning on August 25, insurers will have the option to deny coverage based on past-due premiums and will have the option of applying premium payments for current coverage to past-due premiums. Other provisions will go into effect beginning with the 2026 plan year. NBDF will be providing more detailed information on what to look out for and when.
Supreme Court Upholds Coverage for No Cost Preventive Services
On June 27, the US Supreme Court issued a positive ruling in Kennedy v. Braidwood Management, Inc., upholding the authority of the U.S. Preventive Services Task Force (USPSTF) and maintaining the Affordable Care Act’s requirement that most insurance plans cover preventive services with no patient cost-sharing. NBDF has long fought to maintain the patient protections put in place by the ACA, including the preventive services requirement.
Secretary Kennedy Testifies Before House Energy and Commerce Committee
On June 24, Secretary Kennedy testified yet again before a Congressional committee, this time the House Energy and Commerce Committee. The Secretary faced questions on the fiscal year 2026 budget for the Department of Health and Human Services, which includes the significant restructuring of the department as well as the elimination of a number of programs. Members of the committee also asked about the reductions in force (RIF) announced earlier in the year as well as the complete revamp of the Advisory Committee on Immunization Practices (ACIP).
Court Rulings Continue to Pause Federal Reductions in Force
Court rulings have prohibited the federal government from carrying out various reductions in force (RIFs), including the widespread RIFs at HHS that were announced on April 1. It is still unclear what will happen in the long-term but for now any further action on this has been paused – that means the thousands of employees that would have been officially terminated in early June remain on administrative leave. As a reminder, RIF notices went to 10,000 HHS staff, including all but two of the employees at the Centers for Disease Control and Prevention’s Division of Blood Disorders, which houses one of the federal hemophilia programs.
State:
Louisiana: On June 10th, the Louisiana Hemophilia Foundation (LHF) held their Advocacy Day in Baton Rouge alongside NBDF to discuss Medicaid protection for Louisianians and PBM reform. SB 444, the state’s PBM reform legislation, was passed and signed by Gov. Landry June 25.
Ohio: The Greater Ohio Bleeding Disorders Foundation (GOBDF) continues to advocate against the state Senate’s proposal to eliminate the Rare Disease Advisory Council. Additionally, GOBDF is urging the legislature to ensure that the Complex Medical Help Program, which has been amended to cover Ohioans up to age 26, receives $500,000 for the program for fiscal year 2027.
New Jersey: On June 9, S. 3818, New Jersey’s copay accumulator legislation, was heard in the Senate Budget and Appropriations Committee. Stephanie Lapidow, Executive Director of the New Jersey Hemophilia Association, testified once again in Trenton and the bill was passed. A floor vote is expected in the fall before going to Gov. Murphy.
Rhode Island: While SB 477, the state’s copay accumulator legislation passed the Senate, HB 6209 once again was not brought to a floor vote in the House by the end of session.
