September 2025

An Update on Federal Appropriations and the Government Shutdown

Despite efforts to fund the government for fiscal year (FY) 2026, Congress could not reach an agreement on a short-term continuing resolution (CR) or final FY 2026 appropriations before the September 30 deadline. This lapse in appropriations triggered a government shutdown, and at this time, it’s unclear when and how Congress will reopen the government.

Prior to the shutdown, the House passed a CR that ran through November 21 on a partisan basis. It would have funded the government at current levels for an additional seven weeks, giving Congress time to pass final FY 2026 appropriations bills. However, Senate Democrats who released their own version of a CR that ran through October 31 and addressed health care issues, including extending the Affordable Care Act subsidies and reversing the Medicaid cuts recently adopted in the One Big Beautiful Bill Act. This alternative failed in the Senate, as did the House-passed version, raising the chances for a government shutdown. House Speaker Mike Johnson (R-LA) has sent members home for recess until October 1 raising the chances of at least a short-term shutdown.

Activities needed for the safety and protection of property will continue during a shutdown. As we prepare for what may be a lengthy shutdown, here is important information about how Medicare and federal research programs will be affected by the shutdown. The Office of Management and Budget (OMB) released a memo instructing federal agencies to prepare for reductions-in-force plans targeting employees who work for programs not legally required to continue or are not consistent with the administration’s priorities. This direction differs from typical shutdown instructions and may be subject to a legal challenge should it be implemented.

Medicare: Because Medicare is supported by mandatory funding, not annual appropriations, beneficiaries will still be able to access services and physicians can continue to submit claims, which will be paid. However, those payments may be delayed in a prolonged shutdown. The staff responsible for drafting and finalizing the annual Medicare payment rules, including the Physician Fee Schedule and Hospital Outpatient Prospective Payment System, will be furloughed, so the release of the final calendar year 2026 rules, which typically are expected around November 1, will be delayed in a prolonged shutdown.

Medicare Telehealth Services: In the event of a government shutdown, the Medicare telehealth flexibilities will expire on September 30. If they sunset, Medicare telehealth rules will revert to those in effect prior to the COVID-19 public health emergency. Only beneficiaries in rural areas will be eligible to travel to a qualified originating site to receive telehealth services. No Medicare beneficiaries will be able to receive telehealth services in their homes. Additionally, audio-only services will not be covered should this policy lapse.

National Institutes of Health (NIH): Both the intramural and extramural research programs will be affected by the shutdown, since employees supporting both programs will be furloughed. On the intramural side, the Clinical Center will continue ongoing activities to maintain safety and continue care; however, new patients will not be admitted. Basic services to protect animals and maintain ongoing experiments and facilities will be supported on the intramural campus.

For those with extramural research funding, grantees who received awards prior to the shutdown can continue to draw down those grants except in instances where the award included restrictive terms and conditions. Researchers will not be able to contact their program officers with questions or access other support systems like the eRA Helpdesk.

New grant applications will not be processed during the shutdown; any applications submitted during the shutdown will not be processed until the government reopens, and NIH may recommend that applications submitted during the shutdown be resubmitted once the government is funded. No grant awards will be processed, and those processed prior to the shutdown with an award date of October 1 or later will not receive their Notice of Award until after the government reopens. NIH will be unable to conduct peer review meetings, or advisory council meetings. Web-based systems to support such meetings may also be unavailable until operations resume.

Congressionally Directed Medical Research Program (CDMRP): Almost all staff at the CDMRP will be furloughed due to the government shutdown, with few critical staff remaining. While previous shutdown guidance shared that all application deadlines in October will stay in place, its grant processes will be delayed if there is an extended government shutdown due to program officers being furloughed. All contracts are paid up front so research activities funded under the CDMRP should continue with little to no interruption. However, this program could be targeted as being inconsistent with the administration’s priorities under the recently released OMB memo.

ASH-Supported Sickle Cell Disease Legislation Reintroduced in House

On September 8, the Sickle Cell Disease Comprehensive Care Act (H.R.5178) was reintroduced in the House by Representatives Neal Dunn (R-FL) and Danny Davis (D-IL). Nineteen additional House members joined Representatives Dunn and Davis as original cosponsors of this bipartisan legislation, which aims to ensure that individuals with sickle cell disease (SCD) who are covered by Medicaid have better access to comprehensive, high quality outpatient care, including recommended clinical, mental health, ancillary, and support services. ASH strongly supports this legislation and a quote from ASH President Belinda R. Avalos, MD was included in the press statement Representatives Dunn and Davis issued upon the bill’s introduction in the House. The Senate version of this legislation (S.721) was introduced earlier this year by Senators Tim Scott (R-SC) and Cory Booker (D-NJ). On September 9, the ASH Advocacy Leadership Institute took to Capitol Hill to discuss this important piece of legislation with members of Congress. Visit the ASH Advocacy Center to urge your elected officials to cosponsor Sickle Cell Disease Comprehensive Care Act.

ASH and NIH Leaders Meet about Hematology Concerns and Priorities

On September 17, ASH leaders convened two meetings with (1) Dr. Nicole C. Kleinstreuer, Acting NIH Deputy Director for Program Coordination, Planning, and Strategic Initiatives from the Office of the Director, and (2) leaders from the National Heart, Lung, and Blood Institute to address key priorities in hematology, including concerns about policy shifts, federal funding cuts, innovation, cultivating future hematology researchers, and changes to NIH peer review under the new Center for Scientific Review. NHLIB participants included Dr. Gary Gibbons, Director of NHLBI, Dr. Julie Panepinto, Director of NHLBI's Division of Blood Diseases and Resources, and several others. During the NHLBI meeting, the group also discussed the ASH Sickle Cell Disease 10-Year Impact Report and progress made by ASH and the ASH Research Collaborative in advancing SCD research. These conversations emphasized collaboration, sustaining research momentum, supporting the hematology workforce, and adapting to evolving research review processes to strengthen the future of hematology care and discovery.

2025 ASH Advocacy Leadership Institute Participants Visit Capitol Hill in Support of Research Funding and SCD

As part of the 2025 ASH Advocacy Leadership Institute (ALI) on Tuesday, September 9, 27 ASH members visited more than 50 congressional offices on Capitol Hill to urge Members of Congress to support individuals living with sickle cell disease (SCD) by cosponsoring the Sickle Cell Disease Comprehensive Care Act (H.R. 5178/S. 721). ASH members also urged congressional offices to finalize fiscal year (FY) 2026 appropriations and provide robust funding for the National Institutes of Health (NIH).

NIH to Stop Posting Notices of Funding Opportunities in the NIH Guide for Grants and Contracts on October 1

The National Institutes of Health (NIH) recently issued a notice informing the extramural community that, beginning with the start of fiscal year (FY) 2026 on October 1, 2025, the agency will no longer post notices of funding opportunities in the NIH Guide for Grants and Contracts (NIH Guide). Instead, Grants.gov, a federal-wide portal for discretionary funding opportunities, will serve as NIH’s single official source for grant and cooperative agreement funding opportunities. This effort is part of a wider strategy across NIH to simplify and streamline the application and funding process and to reduce duplication across federal systems. The NIH Guide will continue to be used for policy and informational notices.

ASH Submits Comments to Advisory Committee on Immunization Practices About the Importance of Vaccines for Hematologic Disorders

On September 11, ASH submitted a letter in advance of the Center for Disease Control and Prevention (CDC) Advisory Committee on Immunization Practices’ (ACIP) upcoming meeting on September 18-19, during which the child and adolescent vaccine schedule will be discussed. In the letter, ASH urged ACIP to maintain the current child and adolescent vaccine schedule, highlighting that many individuals with hematologic conditions such as leukemia, lymphoma, sickle cell disease (SCD), and bone marrow failure syndromes are immunocompromised. The letter further expressed concern about restricting access to vaccines, stressing that vaccination is essential for safeguarding patients with blood disorders, their families, and the broader community.

Additionally, on September 15, just prior to the scheduled ACIP meeting, the Department of Health and Human Services (HHS) and CDC announced the appointment of five new members to the ACIP following the total reconstitution of the committee announced in June by HHS.

Read ASH’s letter here.

Department of Health and Human Services (HHS) to Increase Enforcement of Information Blocking

The Office of the Assistant Secretary for Technology Policy/Office of the National Coordinator for Health IT (ASTP/ONC) and Office of Inspector General (OIG) announced increased enforcement actions on individuals or entities found to have engaged in information blocking.

The Enforcement Alert reminds health care entities, which includes physicians, that “the 21st Century Cures Act (Cures Act) defines information blocking as a practice by an individual or entity that is likely to interfere with, prevent, or materially discourage the access, exchange, or use of electronic health information except as required by law or as specified in an information blocking exception.” The penalty for physicians committing information blocking is captured under the Merit-based Incentive Payment System (MIPS), while health information technology developers and health information exchanges would be subject to civil monetary penalties.

Under the Promoting Interoperability performance category of the MIPS, any MIPS-eligible physician who engages in information blocking will not qualify as a meaningful user of certified electronic health record technology for the performance period in which the offense occurred. As a result, the physician will receive a zero score in the Promoting Interoperability category of MIPS, if reporting on that category is required. In cases of group reporting, if an individual physician is found to have committed information blocking, the penalty applies only to that physician, not to the entire group. Since the Promoting Interoperability category accounts for up to one-quarter of a physician’s total MIPS score the impact of a zero score in the Promoting Interoperability category can be significant.

More information about information blocking including definitions, exceptions, and disincentives can be found on the ASTP website: ASTP Information Blocking.

NIH Launches Centralized Resource for Research Areas of Interest

As part of a wider strategy to simplify and streamline the application and funding process, the National Institutes of Health (NIH) recently announced a new centralized and simplified resource, NIH Highlighted Topics, to inform the research community about particular scientific areas of interest to the NIH. Highlighted topics are not funding opportunities, but rather, descriptions of research areas that the NIH encourages applications from the community, including a new or emerging area that is not well known.

ASH Submits Comments on FDA's Draft Guidance for Industry on Myelodysplastic Syndromes

On August 29, 2025, ASH submitted comments to the U.S. Food and Drug Administration in response to the Agency’s Draft Guidance on MyelodysplasticSyndromes (MDS): Developing Drug and Biological Products for TreatmentGuidance for Industry. The guidance was drafted to address trial designs and clinical endpoints that reflect clinical relevance and real-world practice, aiming to improve patient outcomes across all MDS risk categories. ASH’s feedback notes general support for the draft guidance, and highlights the importance of inclusive trial design, appropriate clinical endpoints, and strong safety reporting.

NIH Extramural Loan Repayment Program Application Cycle Opens

The application period to apply for fiscal year (FY) 2026 National Institutes of Health (NIH) Extramural Loan Repayment Program (LRP) awards opened on September 1, 2025 and will close on November 20, 2025. The Extramural LRP was established to recruit and retain highly qualified biomedical and behavioral researchers in the research workforce. The LRP offers up to $100,000 in qualified educational debt repayment in exchange for a two-year commitment to conduct research. Applicants must be qualified health professionals engaged in NIH-mission relevant research for a minimum of 20 hours per week at a nonprofit or government institution. Visit the NIH LRP website for additional information and to apply.