Hemo Alliance Newsletters

Advocacy and Legal Update, June 2025

Advocacy and Legal Update

Budget Reconciliation Bill Moves to Senate – Significant Impacts to Health Coverage

by Artemis Policy Group

On May 22, 2025, the House passed H.R. 1, the “One, Big Beautiful Bill Act,” by the narrowest of margins (215-214), basically along party lines. Using a Congressional tool known as budget reconciliation, this legislation seeks to advance the President’s tax, defense, and border policy priorities, offsetting the cost of those priorities in large part with cuts to Medicaid and other federal health spending.

The Congressional Budget Office estimates that 16 million individuals will lose coverage due to the Medicaid and ACA provisions in the House-passed bill. The following health policies in the bill are of significant concern:

Medicaid

  • The bill would impose mandatory nationwide work reporting requirements on childless, non-disabled adults covered by Medicaid (“Medicaid expansion population”). These requirements would go into effect December 31, 2026;
  • The bill would mandate cost-sharing (for services and prescription drugs) for the Medicaid expansion population;
  • The bill would repeal streamlined redetermination and enrollment processes for Medicaid;
  • The bill would limit Medicaid expansion states’ use of provider taxes as a funding mechanism for states’ share of Medicaid costs;
  • The bill would reduce the federal matching percentage for the Medicaid expansion population in states that use state money to provide benefits to immigrants;

 

Affordable Care Act/Marketplace Plans

  • Notably, the bill takes no action to extend the enhanced advance premium tax subsidies (APTCs) that expire at the end of 2025. (The enhanced APTCs, enacted during the pandemic, make premium subsidies more generous.) Expiration of those enhanced APTCs is projected to cause Marketplace premiums to increase by an average of 75%, resulting in a loss of insurance for 4.4 million people.
  • The bill codifies a number of policies that narrow eligibility for APTCs and limit opportunities to enroll in Marketplace insurance: shortening the annual open enrollment period, eliminating certain special enrollment opportunities, denying or clawing back APTCs from certain Marketplace purchasers.
  • In another technical but significant policy change, the bill eliminates the practice of “silver-loading.”1 This change will lower premiums for silver Marketplace plans but in so doing will reduce APTCs for all who receive them, since APTCs are indexed to the cost of silver plan premiums – effectively raising premium costs for all subsidized purchasers.

 

340B and PBMs

  • The bill would prohibit spread pricing in state Medicaid contracts with PBMs and managed care organizations, requiring transparent pass-through pricing based on ingredient cost plus a dispensing fee.
  • 340B covered entities could be paid above actual ingredient cost but would have to report their margins to HHS.
  • HHS would publish, at least yearly, a report detailing the aggregate amount of payments in excess of actual ingredient cost to all non-hospital 340B covered entities in a state.

 

What Happens Next

The bill now moves to the Senate. We anticipate that the Senate will want to change many aspects of the legislation. Put simply, much is in flux and there are still opportunities and a need for engagement.

Trump Administration Releases Additional Budget Documents for FY 2026

by Artemis Policy Group

The Administration’s planned restructuring of the federal health agencies has come into somewhat sharper focus with the recent release of its FY26 proposed budget. Between May 30th and June 6th, the Administration released an HHS Budget in Brief and a Justification of Estimates. Taken together, these documents confirm that HHS intends to create a new Administration for a Healthy America (AHA) that will take over multiple programs (including bleeding disorders activities) previously administered through HRSA, CDC, and other agencies. Here is what we know – and don’t know – based on the release of the President’s budget:

  • The MCH block grant and activities to address blood disorders are among the programs that will move to AHA.
    • The budget documents do not specify funding levels for the (former) HRSA hemophilia programs. However, the Administration proposes to cut overall funding for special projects of regional and national significance (SPRANS) from $210.1 million (FY24) to $163.7 million. No explanation is given on which SPRANS programs are not being moved to AHA.
  • The 340B Drug Pricing Program will move from HRSA to CMS.
  • The hemophilia programs formerly housed at CDC will move to AHA, with continued funding at $8.6 million. The FY26 Justification combines two separate line items from previous years into a single line item:
    • $ 3.5 million (hemophilia – this funding historically went to the national patient groups for outreach and education programs), and
    • $5.1 million (hemophilia treatment centers – this funding was for Community Counts).
  • One of the budget documents released proposes to eliminate four NIH institutes and restructure the remaining institutes. The National Heart Lung and Blood Institute (NHLBI) would be consolidated into a new National Institute on Body Systems.

 

The President’s budget proposal is not binding on Congress but, traditionally, is taken simply as an indicator of the Administration’s priorities. Congress will need to enact legislation to create AHA and to make the other proposed changes for them to take effect. We’ll know more when the House Appropriations Committee marks up its HHS appropriations bill on July 21, 2025.

We’d love your input on future newsletter topics

Also In This Issue…
Jeff Weighs In
Awards and  Recognition
  • Recognizing Excellence: The 2025-2026 Joe Pugliese Educational Award Recipients

  • Celebrating Collaboration: Hemophilia Alliance awarded BDA of South Carolina’s 2024-2025 Appreciation and Partnership Award

Member and Community Relations Update
  • MCRs In the Community
Administration and Operations Update
  • Welcoming Julie to Team Alliance!
  • Get Ready for Our Fall Members Meeting & Hill Day!
  • Unlocking Insights: The Data Portal
  • Plan Ahead: 2026 Hemophilia Alliance Meeting Calendar is Here
Notes From The Community
  • VWD Connect Foundation Holds 9th Annual Severe Von Willebrand Disease Patient Conference in July

Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

Name Email Phone
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jennifer Borrillo, MSW, LCSW, MBA borrillo@hemoalliance.org 504-376-5282
Heidi Lane, PT, DPT, PCS heidi@hemoalliance.org 435-659-1230
Angela Blue, MBA angela@hemoalliance.org 651-308-3902
Karen Bowe-Hause karen@hemoalliance.org 717-571-0266
Jazzmine Brown, MBA, MSW, LCSW jazzmine@hemoalliance.org 770-570-2649
Ashley Castello, MEd ashley@hemoalliance.org 225-266-5062
Zack Duffy zack@hemoalliance.org 503-804-2581
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Johanna Gray, MPA jgray@artemispolicygroup.com 703-304-8111
Kiet Huynh kiet@hemoalliance.org 917-362-1382
Elizabeth Karan elizabeth@karanlegalgroup.com 612-202-3240
Kollet Koulianos, MBA kollet@hemoalliance.org 309-397-8431
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Julie Lichterman julie@hemoalliance.org 941-779-5971
Dr. George L. Oestreich, Pharm.D., MPA george@gloetal.com 573-230-7075
Theresa Parker theresa@hemoalliance.org 727-688-2568
Mark Plencner mark@hemoalliance.org 701-318-2910
Ellen Riker eriker@artemispolicygroup.com 202-257-6670