Advocacy News Roundup

July 2025

Your Voice is Crucial to Protecting Hematology Research Funding; Urge Congress to Reject Proposed Cuts

The administration’s proposed fiscal year (FY) 2026 budget seeks a drastic cut in funding of nearly 40 percent (approximately $18 billion) to the National Institutes of Health (NIH). If passed by Congress, this short-sighted proposal would undo decades of bipartisan support for biomedical research. A budget cut of this size would eliminate opportunities for the next generation of researchers and diminish the nation's research capacity – slowing scientific progress and depriving patients, families, and communities across the country of new treatments, diagnostics, and preventive interventions.

However, Congress has ultimate authority in determining funding for these agencies, not the president. Congress is currently working to set FY 2026 funding levels for NIH and other important research and public health programs, with decisions being made soon.

Your voice is important. It is vital that elected officials need to hear from you NOW about the impact this funding has on the development of cures and treatments for hematologic and other serious diseases and how proposed cuts in funding and executive actions impacting research and public health issued by President Trump have created uncertainty, confusion, and extreme concern among the research community.

Please take one or more of the following steps to ensure your voice is heard as Congress makes decisions impacting research:

  • Meet with Your Elected Officials – Meetings with your elected officials and their staff – either virtually in Washington, DC or in your state/district – are one of the most effective ways of letting a public official know about you, your priorities, and ASH. The ASH website has information to help guide you through the process of scheduling a meeting with your Senators or Representative.

    Fact sheets that describe the importance of NIH funding in each state are available on the ASH website for you to use during your meetings. Please reach out to ASH Government Relations and Practice staff at [email protected] if you would like talking points for your meeting(s).

    MEET WITH YOUR ELECTED OFFICIALS

  • Contact Congress – Visit the ASH website and enter your contact information to quickly send a message to your elected officials about the importance of sustained funding for NIH and other federal health programs. Please modify the letter to provide examples of why this funding is so important in your district and state by using the information in ASH’s fact sheets that describe the importance of NIH funding in each state.

    Make an even bigger impact by calling your Member of Congress through the United States Capitol switchboard at 202-224-3121and sharing the key points outlined in the message to Congress on the ASH website.

    TAKE ACTION

  • Involve Your Patients – Congress needs to hear from patients and patient advocacy groups about funding for medical research and how critical NIH-funded research is to the development of new medical treatments for patients with blood diseases. Invite your patients to participate in ASH's patient advocacy campaign to send a letter to their Senators and Representative.

    HAVE YOUR PATIENTS TAKE ACTION

  • Share Your Story – Take ASH’s survey to share how the Administration’s policies have impacted your research. Since the Administration took office, policies have been implemented that delay or restrict the release of appropriated funding for peer-reviewed grants, and we need to hear about how these changes are impacting you to inform ASH’s advocacy with the Administration and Congress.

    TAKE THE SURVEY

One Big Beautiful Bill Enacts Sweeping Cuts to Healthcare Access

President Trump signed the One Big Beautiful Bill Act (H.R. 1) into law on July 4. The sweeping package advances many of the President’s top legislative priorities while also making deep cuts to Medicaid, health coverage, and higher education programs. According to the Congressional Budget Office (CBO), the bill would increase the deficit by $3.3 trillion over the next decade, and cut Medicaid by $930 billion. These cuts to Medicaid – along with other health care policy changes – are projected to leave at least 17 million Americans without health coverage.

The bill includes provisions that would significantly reduce Medicaid spending, particularly those aimed at restricting enrollment through more frequent eligibility verifications and mandatory work requirements. Under the bill, all adults aged 19 – 64 in the expansion population would be required to demonstrate that they worked, volunteered, or attended school for at least 80 hours in the month prior to enrollment and throughout their time on Medicaid. However, the bill does include an exception for individuals who experienced a short-term hardship event and for those who meet certain exclusions, including medical frailty. Additional provisions would require beneficiaries to submit ongoing documentation of eligibility. It is this burdensome paperwork requirement that is expected to trigger the loss of Medicaid coverage for millions of Americans.

Additionally, the bill directs the Department of Health and Human Services (HHS) to cap state directed payments—which are a mechanism to help state close the gaps between Medicaid and other payers. These provisions, which would reduce the federal share for the Medicaid program, will result in reduced access for patients if states and providers cannot make up the shortfall.

The bill significantly lowers the current 6% cap on provider tax rates in Medicaid expansion states to 3.5% by 2032. These taxes help states fund their share of Medicaid and draw federal match funding. States can then use those payments to provide more funding to the providers that paid the tax.

The revised bill does include an increase to the Medicare Physician Fee Schedule (MPFS) conversion factor by 2.5% in 2026. Notably, this increase is not tied to the Medicare Economic Index or built into the budget baseline creating a cliff in 2027. Additionally, the bill modifies provisions related to orphan drugs under the Medicare Drug Price Negotiation Program. Under current law, the Inflation Reduction Act exempts orphan drugs—those developed to treat rare diseases—from negotiation if they are approved for only one rare condition. This bill will broaden this exemption beginning in 2028 to include orphan drugs approved for multiple rare diseases.

Lastly, the legislation will enact cuts to higher education programs, which will significantly impact medical student borrowers. Specifically, the bill eliminates the GradPLUS Loan program and income driven repayment plans, beginning July 1, 2026. Additionally, the bill reduces annual and lifetime loan limits for graduate and professional student borrowers. Medical and other professional students will have an annual borrowing limit of $50,000 and an aggregate lifetime limit of $200,000.

ASH engaged with members of Congress to underscore the critical role Medicaid plays in the lives of hematology patients, including providing timely diagnoses, lifesaving treatments, and comprehensive care. Following passage of the One Big Beautiful Bill Act, ASH issued a statement expressing disappointment with the cuts to Medicaid contained in the bill.

As the bill is implemented, ASH is committed to working with the administration as various provisions of the law are implemented and will continue to advocate for Medicaid beneficiaries with hematologic conditions.

NIH Issues Notice on Grants Appeals Process

On July 7, the NIH issueda guide notice to provide the research community with direction on closing out grants and cooperative agreements currently undergoing the NIH appeals process. The agency noted that the process of reviewing appeals for recent grant terminations is ongoing. It stated that “in cases where a recipient has submitted an appeal, but has not yet received a response, NIH will not take action to initiate unilateral closeout while the appeal is under review. We ask that the community use this notice as supporting documentation to prevent an audit finding related to closeout.”

Updated Information on NIH Extramural Loan Repayment Programs

The National Institutes of Health (NIH) Loan Repayment Programs (LRPs) are programs established by Congress and designed to recruit and retain highly qualified health professionals into biomedical or biobehavioral research careers. NIH recently published detailed information for each of programs for the upcoming application cycle that runs from September 1 until November 20, 2025. Additional detailed information about each LRP is provided at www.lrp.nih.gov or via the links below:

ASH Joins Two Coalition Letters Responding to Recent Changes to the Federal Immunization Review Processes

Immunizations are a cornerstone of public health and the safety of the American people. In response to the recent changes in the immunization review process, the Society has joined two letters. The first is an open letter from the medical and public health community to the American public, emphasizing the importance of vaccines. The letter reaffirms the medical community's commitment to promote public understanding and confidence in the use of vaccines to avoid another severe respiratory virus season and resurgence of vaccine-preventable illnesses and deaths. The second is a letter in coalition with the American Medical Association House of Medicine to Secretary Kennedy urging the secretary to reinstate the membership of the Advisory Committee on Immunization Practices (ACIP) within the Centers for Disease Control and Prevention (CDC). The ACIP provides evidence-based recommendations regarding vaccinations through a transparent public process, and plays a critical role in protecting the public’s health. Through these letters, ASH is committed to protecting the health and safety of the public from vaccine-preventable disease by ensuring continued access to safe and effective vaccines.

New Payment Model to Test Prior Authorization in Traditional Medicare

On June 27, the Centers for Medicare & Medicaid Services (CMS) in conjunction with the CMS Innovation Center announced a new model aimed at curbing fraud, waste, and abuse in the Medicare fee-for-service program (i.e. traditional Medicare). The Wasteful and Inappropriate Service Reduction (WISeR) model will test the use of advanced technology to streamline prior authorization for certain services. The model will be implemented over a six-year period in select Medicare Administrative Contractor (MAC) jurisdictions. A provider’s only role in the model will be to submit prior authorization requests and supporting documentation.

Currently, there are no hematologic services captured under this model, however the Society will continue to monitor the development and progress of the model to stay abreast of prior authorization reform in the coming years.

The Federal Register Notice and the CMS Innovation Center website provide additional information.

Reminder: NIH Webpage Dedicated to Information on Implementation of New Initiatives and Policies

As a reminder, earlier this spring NIH unveiled a new Implementation of New Initiatives and Policies page on the NIH Grants & Funding Website to pull together the latest information on recent and upcoming changes that impact applications and grants administration. Page highlights include:

  • NIH Grants and Funding Information Status. Keep up to date on how NIH grants and funding information is evolving as NIH aligns with new agency priorities (e.g., status of communications, funding opportunities, application guidance, and more).
  • Upcoming Changes. Get the latest status on in-progress initiatives like the agency’s adoption of Biographical Sketch and Current and Pending (Other) Support.
  • Recent Changes. Learn about key initiatives implemented in 2024 that culminated in numerous changes to grant application content and review for due dates on or after January 25, 2025, and any adjustments made to those initiatives.