May 2025
ASH Committee on Practice Members Visit Capitol Hill
On April 29, following the ASH Committee on Practice Spring business meeting, members of the committee visited Capitol Hill. The Committee visited 47 offices, advocating for Members of Congress to protect access to hematologic care and support individuals living with sickle cell disease (SCD). Congress is currently amid discussions to offset the administration’s priorities through the budget reconciliation process (please see additional information in GOP Reconciliation Plan blurb below). One area under consideration is cutting Medicaid funding to the states. ASH members urged Congress to oppose cuts to the Medicaid program by sharing stories on the impact Medicaid has had supporting access to care for some of the most vulnerable individuals impacted by hematologic conditions. ASH members also asked Congress to pass comprehensive Medicare physician payment reform to end the cycle of physician payment cuts and protect access to care.
Additionally, Committee on Practice members urged co-sponsorship of the Sickle Cell Disease Comprehensive Care Act (S.721). The Sickle Cell Disease Comprehensive Care Act is bipartisan legislation that aims to ensure access to comprehensive, high quality outpatient care for individuals with SCD by allowing states to establish Medicaid Health Home programs with SCD as the single qualifying condition for eligibility.
ASH Submits Testimony to Congress Supporting Continued Funding for Biomedical Research
On April 30, the U.S. Senate Committee on Appropriations held a hearing on “Biomedical Research: Keeping America’s Edge in Innovation” that focused on the importance of investing in biomedical research agencies and programs across the federal government, with particular focus on the National Institutes of Health (NIH). Ahead of the hearing, ASH submitted a statement for the record highlighting how vital federal research funding is for hematology and noting how cuts to funding of this vital research will result in fewer clinical trials, less fundamental discovery research, and slow progress in delivering new innovations and life-saving advances.
President's FY26 Budget Proposes Significant Cuts to Research and Public Health Programs
On May 2, the Trump Administration released a high-level or “skinny” budget request for fiscal year (FY) 2026, which includes a preview of some of the president’s funding and policy recommendations across the federal government, including substantial proposed cuts to research and public health programs.
The budget proposes a $163 billion (22.6%) cut to nondefense discretionary spending from FY 2025 levels, including reducing the Department of Health and Human Services’ topline funding by $33.3 billion, a 26.2% decrease below FY 2025 enacted levels. Of note, the budget proposes a total of $27 billion in funding for the National Institutes of Health (NIH), which the materials describe as a decrease of $18 billion below current funding levels. The budget would eliminate funding for four NIH institutes and centers and proposes to restructure the agency into five consolidated focus areas. The document specifies that the Advanced Research Projects Agency for Health would be retained amidst this restructuring. The president’s proposal includes significant reductions in funding for the Centers for Disease Control (CDC) and other public health agencies.
HHS Secretary Robert Kennedy testified on May 14 before the House Appropriations Labor, Health and Human Service, Education, and Related Agencies Subcommittee and the Senate Health, Education, Labor and Pensions (HELP) Committee about the Administration’s budget request, including funding for NIH and restructuring of HHS agencies, including NIH and CDC. The administration is expected to release a full budget request, which will provide more detailed funding breakdowns of the proposed changes, at a later date.
As ASH continues to monitor the FY26 budget and appropriations process, it is more important now than ever for your elected officials to hear your voice. Visit the ASH Advocacy Center to quickly contact your Senators and Representative to help ensure that HHS and other important public health programs receive adequate funding in the upcoming fiscal year and beyond and that any changes to NIH’s structure be undertaken with input from Congress and stakeholders.
House Passes Reconciliation Bill
On Thursday, May 22, the U.S. House of Representatives voted to pass its version of reconciliation legislation by a vote of 215-214. The bill includes several policy priorities of the 119th Congress and the White House related to public health. The bill cuts at least $715 billion from Medicaid over a decade, largely through largely through a work requirement provision that would require beneficiaries to report work, education or volunteering hours to their state. The work requirements would begin at the end of 2026. Along with other provisions affecting enrollment and eligibility, according to the Congressional Budget Office, the bill will lead to 10.3 million people losing some Medicaid coverage and 7.6 million people becoming uninsured. Currently, Medicaid covers almost 80 million Americans.
The bill now heads to the U.S. Senate where several changes to the text are expected. The U.S. House will have to consider and pass any changes made in the U.S. Senate.
ASH Sends Letters to Secretary Kennedy, New NIH Director Highlighting Hematology Priorities
Recently, ASH sent letters to the new Secretary of the Department of Health and Human Services (HHS), Robert F. Kennedy, Jr., and the new Director of the National Institutes of Health (NIH), Dr. Jay Bhattacharya. The letters highlighted opportunities to collaborate on health priorities relating to hematology. The Society encouraged Secretary Kennedy to support policies related to addressing barriers among people with sickle cell disease (SCD), including support of the Sickle Cell Disease Comprehensive Care Act and strengthening federal programs to collect data on SCD. Other priorities ASH touched upon include drug shortages, maternal health, physician payment reform, access to innovative therapies, prior authorization, and telehealth. Additionally, ASH encouraged both Secretary Kennedy and Dr. Bhattacharya to protect and advance hematology research and noted ASH’s desire to work with NIH to ensure that the agency continues to support the next generation of researchers and a pipeline for innovative therapies that can be accessible for all patients.
ASH Joins Sign-on Letter to Secretary Kennedy Regarding Newborn Screening
On May 5, the American Society of Hematology (ASH) joined a sign-on letter to the Department of Health and Human Services (HHS) Secretary, Robert F. Kennedy Jr., urging the Administration to reinstate the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) and preserve federal newborn screening infrastructure. The letter emphasized the importance of newborn screening to detect diseases in a timely fashion and provide American children the best chance at a healthy life.
Changes to HHS and NIH Grants Policies Announced
On April 16, HHS issued a new grants policy statement, effective immediately and superseding the previousversion released in October 2024. Among significant changes to the policy, HHS states that recipients who receive a federal grant award will not “operate any programs that advance or promote diversity, equity, and inclusion (DEI), diversity, equity, inclusion, and accessibility (DEIA), or discriminatory equity ideology in violation of Federal anti-discrimination laws” or engage in a “discriminatory prohibited boycott” during the term of the award and that HHS “reserves the right to terminate financial assistance awards and claw back all funds” if these conditions are not met. NIH grants are governed under a separate 2024 NIH Grants Policy Statement; on April 21 NIH, released a similar update to their terms and conditions of award.
NHLBI Announces Funding Opportunity for NHLBI-AI Initiative
NHLBI is currently soliciting applications to help build the NHLBI-AI Enabled Precision Medicine Initiative for HLBS Health, a consortium that will include one or more AI Data Science Center (DSC), a Precision Medicine Coordinating Center (PMCC), modular precision medicine programs, and individual AI research projects. A two-step process is involved in applying for an NHLBI-AI Initiative Award. In the first stage, Letters of Request (LORs) will be submitted and reviewed by an AICC Committee in consultation with NHLBI. In the second stage, the AICC Committee will invite those teams with the most compelling LORs to submit a full application. Additional information on how to apply, including key dates, can be found on the NHLBI website. The full funding opportunity announcement can be viewed here.