Advocacy and Legal Update
Washington Update
by Artemis Policy Group
On April 3rd, President Trump released his budget proposal for fiscal year (FY) 2027. Many of its specifics are similar to what the Administration proposed for FY26. Here are the items that are most relevant to HTCs:
- HRSA: President Trump again seeks to move basically all programs currently housed at the Health Resources and Services Administration (HRSA) to a (proposed) new agency that would be called the Administration for a Healthy America (AHA). We believe the proposed transfer would include the National Hemophilia Program at HRSA, but the budget documents released to date aren’t detailed enough to be certain. The Maternal and Child Health Bureau and the Special Projects of Regional and National Significance that are the parent programs for the hemophilia program would move.
- CDC: President Trump again proposes to move many programs currently housed at the Centers for Disease Control and Prevention (CDC) to AHA. The budget is explicit that the activities of the Division of Blood Disorders would move. The proposal would merge the hemophilia and hemophilia treatment center budget lines into one line but would continue to fund the combined program at current levels.
- OPA: Finally, President Trump again proposes moving the Office of Pharmacy Affairs that administers the 340B Program to the Centers for Medicare and Medicaid Services (CMS). He would also increase funding for the program significantly to allow OPA to conduct more oversight.
Please remember that, while the President’s Budget outlines the Administration’s priorities, ultimately Congress decides the funding levels for federal programs and decides where they are located. Last year, Congress rejected the President’s FY26 proposal to reorganize HHS and instead opted to provide level funding for the CDC and HRSA hemophilia programs.
The Hemophilia Alliance along with national patient advocacy partners are working to encourage Congress to fund the hemophilia programs for FY27. Most recently, the Hemophilia Alliance participated in advocacy to ask Senators to co-sign Senator Ed Markey’s Dear Colleague letter in support of the federal bleeding disorders programs. We are pleased to report that 9 Senators joined that letter recognizing the value of HTC-provided care and expressing support for the HRSA and CDC hemophilia programs.
Protecting Medicaid Patients
As previously reported, the One Big Beautiful Bill Act (Public Law 119-21) enacted in 2025 will bring major changes to Medicaid and Marketplace coverage for HTC patients and millions of other Americans. One of the law’s most significant changes will require Medicaid expansion states to implement “community engagement” [work] requirements for certain adult Medicaid applicants and enrollees. Beginning next year (in most states), individuals who fail to comply will lose their Medicaid coverage, unless they meet specified criteria for an exemption. One of the grounds for exemption is “medical frailty,” which the law defines as encompassing individuals with “serious or complex medical conditions.”
It is the position of the Hemophilia Alliance, the National Bleeding Disorders Foundation, Hemophilia Federation of America, and the Coalition for Hemophilia B that bleeding disorders constitute “serious or complex medical conditions” and therefore are grounds for exemption from the community engagement requirements. Importantly, medical frailty does not require a finding that an individual can’t work; medical frailty means, rather, that the individual lives with a serious or complex medical condition that puts them at risk if they lose their Medicaid coverage.
The national partners have written to CMS and copied state Medicaid directors, setting forth this position. In March and April, the Hemophilia Alliance led a second phase of outreach, working with HTCs and chapters to reinforce this crucial message with their respective state Medicaid agencies. Thank you to Alliance members who joined us in this effort! The Hemophilia Alliance will continue working with community partners to mitigate, as far as possible, unnecessary and dangerous coverage losses for individuals who live with bleeding disorders.
The Hemophilia Alliance has developed a summary overview of the coming Medicaid changes that may be helpful to HTC teams. We have also developed a one-pager that HTCs can personalize and use as they begin to educate patients about the new requirements. We work for you!
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Also In This Issue…
Jeff Weighs In
Member and Community Relations Update
- Opportunity to Contract for Home Health Nursing Services with BrightStar
- When Formularies Fail: The Policy Breakdown Driving Hemophilia Drug Denials and How Patients and HTCs Can Fight Back
Administration and Operations Update
- Unlocking Insights: Hemophilia Alliance Data Portal
- 28th Annual Linda Gammage Social Work Conference – A Success!!
- Spring Member Meeting Highlights: What Members Are Talking About
- 2027 Alliance Meeting Calendar is Here!