Hemo Alliance Newsletters

Advocacy Update, August 2025

Advocacy and Legal Update

Advocacy Continues to Extend the Enhanced Health Care Tax Credit

Many bleeding disorders patients – along with 24 million other Americans – rely on the Marketplaces for their health insurance. Federal advance premium tax credits (“APTCs,” also sometimes referred to as premium subsidies) help most Marketplace purchasers to afford the premiums for their coverage. APTCs, created in 2010 as part of the Affordable Care Act, were “enhanced” by legislation passed in 2021 and 2022. That legislation made APTCs more generous, and made them available to more people (i.e., middle-income families living in high-cost insurance markets who were previously classified as above-income for tax credit eligibility). Thanks to the availability of enhanced APTCs, Marketplace insurance has become more affordable and Marketplace enrollment doubled between 2020 and 2025. The enhanced tax credits, however, have an expiration date of December 31, 2025.

As we approach the fall open enrollment season for 2026 insurance, Congress must act now to preserve access to coverage and care. If Congress fails to extend the tax credits, premiums will skyrocket for all Marketplace participants – those who get the tax credits and those who don’t. This spike in costs will be unaffordable for many; projections suggest that more than 4 million Americans will drop their insurance. The soaring costs and insurance losses will jeopardize the health and financial wellbeing of patients with bleeding disorders as well as millions of other Americans.

Extending the enhanced APTC is an urgent priority for patients with serious health needs and for the groups representing them. Unfortunately, three in four Americans say they’ve heard little or nothing about the expiring tax credits – but when they learn about the issue, three-fourths support action to extend the enhanced APTCs. Health providers, insurers, AHIP, and stakeholders from across the health landscape agree that Congress must act to preserve and extend the enhanced health care tax credit.

The Hemophilia Alliance is elevating this issue via the Alliance’s advocacy platform. We encourage you to join the Alliance in urging Congress to act NOW to extend the enhanced tax credits and protect coverage and care for people with bleeding disorders and millions of others across the country.

Marketplace Plan Regulatory Update

On June 20, 2025, the US Department of Health and Human Services released a final “Marketplace Integrity and Affordability” rule. The rule imposes new restrictions and administrative burdens on eligibility, enrollment, and subsidies for Marketplace insurance. HHS estimates that the policies included in this final rule will cause up to 1.8 million individuals to lose coverage in 2026. The coverage losses are intentional: the Administration maintains that millions of consumers are improperly enrolled in subsidized Marketplace coverage.

The rule’s policies take effect over varying timeframes – some as early as August 25, 2025. Two lawsuits have been filed to challenge some provisions of the rule, and on August 22nd, a federal district court entered an emergency stay preventing some of the rule’s provisions from going into effect while litigation continues. Matters remain in flux, as it is possible that the federal government could appeal the court ruling, or that HHS will provide additional guidance to states. Here is what we know for now about the near-term (2025-26) impacts of the rule, as well as rule provisions affected by the court ruling.

Eligibility and Enrollment Opportunities

Effective August 25, 2025:

  • The rule ends the monthly special enrollment period (SEP) for people at or below 150% of the Federal Poverty Level (FPL), i.e., those who may “churn” on and off of Medicaid.
  • The rule ends Marketplace and Basic Health Program (BHP) eligibility for Deferred Action for Childhood Arrival (DACA) recipients, reinstating a pre-2024 definition of “lawfully present.” DACA recipients who were enrolled in Marketplace or BHP plans will lose their insurance by August 31.
  • The rule would have allowed insurers to deny new coverage to consumers who owe past-due premiums from previous years (notwithstanding the Affordable Care Act’s guaranteed issue protections). This policy was paused by the court order.

 

Effective Plan Year 2026:

  • The rule would have reduced SEP enrollment opportunities by imposing stricter eligibility verification requirements. This policy was paused by the court order.
  • The rule would have created new barriers to automatic re-enrollment in $0 premium plans: enrollees in such plans would have been required to pay premiums of at least $5/month until they update their application. This policy was paused by the court order.

 

Changes to subsidies (advance premium tax credits, or APTCs)

The rule would have imposed tighter income verification procedures on APTC applicants, with the stated aim of addressing improper APTC payments. Marketplaces would have been required to verify household income inconsistencies, and enrollees would have lost APTC-eligibility if they failed to file and reconcile APTCs for any single previous year. These policies were paused by the court order.

Changes to actuarial value (AV)

Effective August 25, 2025:

  • The rule adopts a less protective threshold for APTC-eligible consumers who underpay their premiums by small amounts.

 

Effective Plan Year 2026:

  • The rule would have allowed plans to make larger downward variations from the actuarial value AV requirements that apply to plans at different metal tiers. (AV is the calculation of how much a plan covers vs. a person pays in out-of-pocket costs.) This policy was paused by the court order.
  • The final rule adopts a methodology that yields a higher premium adjustment percentage. This will result in higher annual out-of-pocket maximums and higher premiums for Marketplace enrollees but also, ultimately, for people with large group insurance.

 

The Marketplace Integrity and Affordability rule makes additional changes with later effective dates (e.g., shortening the open enrollment period for 2027 insurance). The Alliance will continue to provide updates on these policy changes, as well as on new litigation developments.

Legislative Updates

by Artemis Policy Group

The One Big Beautiful Bill Act Becomes Law

On July 4, President Trump signed into law H.R. 1, the One Big Beautiful Bill Act, the mega reconciliation bill which Congress had been working on since January. The law contains dozens of provisions impacting access to health insurance coverage under Medicaid, Medicare, and Marketplace plans. Many of the new policies that will have a direct impact on people living with bleeding disorders do not go into effect for a couple of years, but other policies begin immediately. Some of the more immediate changes have to do with how states fund Medicaid (provider taxes and state directed payments); these policies could lead to a decrease in federal payments to states and can result in reduced eligibility and limited services in coming plan years. Other provisions that will have a direct impact on beneficiaries eligibility under Medicaid do not start until January 2027 or later.

The Hemophilia Alliance hosted a webinar on the provisions of the bill impacting the bleeding disorders community that can be found here.

Funding for Federal Bleeding Disorders Programs

In late July, the Senate Appropriations Committee passed its Labor, Health and Human Services, and Education Appropriations bill for fiscal year (FY) 2026. The bill provides funds for all of the agencies of the Department of Health and Human Services as they currently exist, including CDC and HRSA. The bill did not create the Administration for a Healthy America.  All of the federal hemophilia programs are maintained at current funding levels:

  1. HRSA’s Hemophilia Treatment Center Grants within SPRANS – SPRANS was funded at $196 million, which includes the $4.9 million for HTCs based on language in the report.
  2. CDC’s HTC Grant program maintained at $5.1 million.
  3. CDC’s Hemophilia Grant program for outreach and education maintained at $3.5 million.

 

This is just the first step in the appropriations process – the full Senate still needs to pass the bill, and the House must consider and pass their appropriations bills before September 30, 2025. As in past years, Congress may be unable to meet this deadline, and we may see another continuing resolution (which also maintains funding at current levels).

We’d love your input on future newsletter topics

Also In This Issue…
Jeff Weighs In
Member and Community Relations Update
  • Welcoming New Faces to the MCR Team
  • Role of the Member and Community Relations Team
Administration and Operations Update
  • Chart the Future of HTC Leadership — Register for MPBA 2026!
Notes From The Community
  • Alliance hosts BD SUMHAC Webinar for members only: Mental Health and Substance Use in the Bleeding Disorders Community
  • CHOP HTC Receives Research Grant from Brandywine Valley Hemophilia Foundation
  • VWD Connect Foundation sponsors a Provider Education Workshop on Severe VWD

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
Kelly Waters, MSW, LCSW kelly@hemoalliance.org 804-317-4998