Advocacy

The Improving Access to Transfusion Care for Hospice Patients Act (S. 1936) has been introduced in the U.S. Senate by Senators Jacky Rosen (D-NV), John Barrasso (R-WY), and Tammy Baldwin (D-WI). This bipartisan bill aims to increase access to palliative blood transfusions for patients receiving end-of-life care through the Medicare hospice benefit by establishing a demonstration program to provide a separate payment for blood transfusions in addition to the daily reimbursement rate for hospice care services.

As Congress explores options to offset the current administration’s budget priorities through the Congressional budget reconciliation process, one area under consideration is Medicaid funding. Medicaid provides health care coverage to one in five Americans – more than 79 million people.

ASH is extremely concerned about the steps the Administration continues to take to radically restructure the U.S. Department of Health and Human Services (HHS), eliminate critical programs, and significantly reduce the federal workforce. This includes devastating changes to agencies with programs critical to hematology, including the Centers for Disease Control & Prevention (CDC), Food and Drug Administration (FDA), National Institutes of Health (NIH), Centers for Medicare & Medicaid Services (CMS), and more. The Society is continuing to try to understand the impact that these changes have had and will have on hematology-related research, public health programs, and patient care.

As the administration issues executive actions impacting research and Congress begins efforts to draft fiscal year 2026 spending bills, lawmakers must hear from constituents about how these efforts impact hematology. ASH also wants to hear from you about how executive orders are affecting hematology patients and research.

ASH has been working with congressional sickle cell disease (SCD) champions on bipartisan legislation to improve care for individuals with SCD. The Sickle Cell Disease Comprehensive Care Act (S. 721) expands the existing Medicaid Health Home program, first authorized as part of the Affordable Care Act, to allow states to submit a state plan amendment (SPA) to establish a Health Home with sickle cell disease (SCD) as the single qualifying condition for eligibility.

Drug shortages are reaching an all-time high in hematology and oncology care. ASH continues to keep members apprised of shortages and work with Congress, federal agencies, and other stakeholders to ensure continued access to safe and effective hematologic drugs.