Hemophilia Alliance Newsletters

Advocacy Update, June 2026

Advocacy and Legal Update

Washington Update
by Artemis Policy Group

CMS Releases Rule on Medicaid Work Requirements

On June 1, 2026, the US Centers for Medicare and Medicaid Services (CMS) released its long-awaited interim final rule implementing the “community engagement” requirements (also known as work requirements) that Congress adopted as part of the One Big Beautiful Bill Act of 2025 (OBBBA). This is one of the biggest changes in the OBBBA and stakeholders have been looking for this rule to provide the nitty-gritty details on how work requirements would be operationalized. A high-level summary of the rule is available here.

Background and New Policy on Medical Frailty

As previously reported, OBBBA requires adults applying for or already covered under Medicaid expansion (just one of many Medicaid eligibility pathways) to engage in 80 hours/month of community engagement (CE) activities: work, school, jobs training, volunteering, etc. The law also provides a number of exclusions and exceptions to the work requirements, including an exclusion for people deemed “medically frail,” a category that encompasses those with “serious or complex medical conditions.” During debates and passage of OBBBA, members of Congress said this language would protect medically vulnerable individuals against potentially devastating coverage losses stemming from the new policy.

In the months since OBBBA’s passage, Hemophilia Alliance and partners have advocated with CMS and state Medicaid programs that bleeding disorders are serious or complex medical conditions within the meaning of the statute. Over that same period, CMS held months of informal discussions with states about how they can operationalize the medical frailty exclusion – e.g., through adoption of lists of ICD-10 codes for serious or complex conditions (early-implementation states like Nebraska Medicaid have followed this strategy).

Unfortunately, CMS chose to pivot and go beyond the law to lay out a much narrower interpretation of “medical frailty.” According to the rule, states have to undertake a two-part inquiry to determine who is entitled to an exclusion:

  1. Does the person have a serious or complex medical condition (CMS mentions hemophilia and sickle cell disease as possible examples)? States are encouraged to develop ICD-10 code lists of such conditions, so our initial outreach was still useful. AND ALSO
  2. Does the condition impact the individual’s ability to work?


By adding a second prong to the medical frailty standard (i.e., inability to work), the rule hugely complicates the task for states to verify who is eligible for the medical frailty exclusion, as well as for providers who may be forced to evaluate whether patients are physically able to work. The overall impact of CMS’s new rule is a greatly increased risk of coverage loss for people with bleeding disorders and other serious health issues. (Most of the Medicaid coverage losses from policies like this come from red tape rather than enrollees’ failure to satisfy the underlying requirements.) We expect that there will be lawsuits challenging the rule for being inconsistent with the text of the law.

Impact for HTCs

We were hoping that people with bleeding disorders would be categorically excluded under “medical frailty” to avoid having to jump through all of the paperwork hoops. This is now much less likely. More HTC patients will have to go through the steps to demonstrate that they are meeting the CE requirements (working, going to school, etc). Some HTC patients may seek documentation from their providers that they are unable to engage in CE activities. Other HTC patients will qualify under other exclusions, such as being parents or caregivers.

As the rule currently stands, HTCs will have more work to support patients navigating CE requirements, and more of our patients might lose coverage. The Hemophilia Alliance will continue our advocacy on the federal and state levels to try to change the policy to reduce unnecessary red tape. Over the next few months, Hemophilia Alliance will also continue to provide policy updates and educational materials to help HTCs and their patients prepare for the coming changes. Stay tuned for further updates and a webinar this summer.

House Appropriations Bill Maintains Funding for Hemophilia Programs

On June 9, the House Committee on Appropriations voted to approve a FY 2027 appropriations bill for Labor, Health and Human Services, Education and related Agencies (LHHS) which maintains funding for the federal hemophilia programs, even as the bill cuts overall health spending. The bill actually increases appropriations for Special Projects of Regional and National Significance (SPRANS), the program category that encompasses HRSA’s hemophilia program. While the House report does not specify a dollar figure for the HRSA hemophilia program, it does contain language recognizing the value of that program, and expressly supports funding for “a coordinating center to disseminate best practices and advance high-quality care” – namely, the National Hemophilia Program Coordinating Center.

As in past years, the bill would maintain funding of $3.5 million for hemophilia activities at the Centers for Disease Control and Prevention (CDC), and $5.1 million in CDC funding for hemophilia treatment centers.

Passage of the Committee’s LHHS appropriation bill is only one step in the process, but it is a positive one. The Hemophilia Alliance team will continue to monitor appropriations and advocate with lawmakers for continued funding of the federal hemophilia programs.

The Administration Proposes Sweeping Revisions to Rules on Federal Grant Administration

On May 29, 2026, the Office of Management and Budget (OMB) published a proposed rule making significant changes to the Uniform Grants Guidance (UGG). Codified at 2 CFR Part 200, the UGG is a comprehensive set of regulations that dictate how all federal grants, including grants to Hemophilia Treatment Center grants, are administered. The proposal is open now for public comments until July 13, 2026.

Under the proposed rule, the basic legal framework and organization of the UGG largely would remain intact. However, new provisions codify various directives in recent executive orders relating to gender affirming care, gender ideology, and diversity, equity and inclusion. Additionally, the proposed rule requires grants to include the ability for the government to terminate funding for convenience, and for recipients to submit brief justifications prior to drawing down funds. Under the proposal, senior political appointees must approve notices of award prior to their issuance. Notably, OMB did not offer updates to indirect cost rate negotiations, although OMB did indicate that they may consider this topic in future rulemaking. The rule would be effective on October 1, 2026, and applicable to federal awards made during fiscal year 2027.

The Hemophilia Alliance will continue to provide relevant updates to members as revisions to the UGG are finalized.

Have a story you want to share or a topic you would like us to cover?

Also In This Issue…
Jeff Weighs In
Alliance Board Update
  • Welcome New Board Member!
Member and Community Relations Update
  • Working with Self-funded Plans: Opportunities and Challenges in 2026
Administration and Operations Update
  • Welcoming Mike and Nyla to Team Alliance!
  • 2026 Fall Members Meeting & Hill Day: Registration Now Open!
  • Nurses Report Strong Practice Impact and High Value from the 2026 Hemophilia Alliance CE Meeting
  • PTs Unite in Chicago for the 3rd Annual Hemophilia Alliance CE Conference
  • 2027 Meeting Schedules and Save the Dates!
Notes From The Community
  • The Hemophilia Alliance Foundation Announces Scholarship Winners
  • Impact Grants 2026: Empowering Change, Inspiring Solutions!
  • 340B Grantee Spring Conference 2026

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
Miriam Goldstein mgoldstein@artemispolicygroup.com 703-304-8111
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
Dr. George L. Oestreich, Pharm.D., MPA george@gloetal.com 573-230-7075
Nyla Page nyla@hemoalliance.org 603-986-0733
Theresa Parker theresa@hemoalliance.org 727-688-2568
Mike Popa popa@hemoalliance.org 614-563-7606
Jennifer Anders Rose rose@hemoalliance.org 954-218-8509
Kelly Waters, MSW, LCSW kelly@hemoalliance.org 804-317-4998