2025 End of Year Report

Over the course of 2025, federal health agencies faced significant organizational disruption under the new Administration, including early retirements, layoffs, administrative memos, and numerous executive orders affecting agency operations and public health programs. In response, ASH expanded its advocacy to support those impacted and to safeguard programs critical to hematology research and patient care.

• With the start of the new Administration, ASH submitted a letter to the Presidential transition team outlining the Society’s federal policy priorities and emphasizing the need to protect research infrastructure, strengthen regulatory science, and support individuals with blood disorders.
• Amid the ongoing downsizing and restructuring within the U.S. Department of Health and Human Services (HHS), staff from the Centers for Disease Control and Prevention’s (CDC) Division of Blood Disorders and Public Health Genomics (DBDPHG) were placed on administrative leave. This Division oversees the Sickle Cell Data Collection (SCDC) Program, the nation’s only surveillance system for Sickle Cell Disease, which now operates in 16 states and captures data on nearly half of the U.S. SCD population.
  • As a response, ASH spearheaded a letter to HHS Secretary Kennedy alongside 95 organizations urging the reinstatement of the division and underscoring the serious consequences of disrupting this essential public health program. The letter was also shared with key Congressional leaders.
  • On April 9, 2025, ASH provided outside witness testimony to the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies (Labor-HHS) for the FY 2026 Labor-HHS appropriations bill. The statement highlighted ASH’s concern about the status of the Division’s staff and urged Congress to increase funding for the Sickle Cell Data Collection Program in FY 2026. n FY 2026.
  • ASH also urged its members to contact Congress and share their concerns about the devastating changes to CDC, FDA, NIH, CMS, and other federal agencies, and the resulting impact on patients with hematologic conditions and hematology research. To date, more than 100 actions have been taken, including social media messages and emails to congressional offices.
• On April 28, 2025, ASH sent a letter to the then newly confirmed HHS Secretary Robert F. Kennedy Jr., encouraging him to support policies to address barriers for people with SCD, including backing the Sickle Cell Disease Comprehensive Care Act and stronger federal SCD data collection. The letter also highlighted priorities such as drug shortages, maternal health, physician payment reform, access to innovative therapies, prior authorization, and telehealth.

• ASH expanded the Society’s base of advocates by: reaching out to ASH members who serve on committees and to other ASH members in targeted congressional districts; hosting an advocacy training webinar; and expanding the resources in ASH’s Advocacy Toolkit, including creating personalized state-specific funding fact sheets and collecting personal impact stories. ASH also increased action alerts and Grassroots engagement and boosted strategic social media messaging to mobilize members and highlight key policy issues.
• As a result of ASH’s expanded advocacy agenda, the Society conducted District visits for the first time. These meetings gave members the opportunity to connect with their representatives in their own communities without needing to travel to Washington, D.C. In 2025, ASH held over 20 District visits, strengthening local engagement and elevating member voices at the federal level.
• Throughout the year, ASH members and staff visited numerous Congressional offices in Washington, D.C., to advance the Society’s advocacy priorities. Building on the Committee on Government Affairs and Committee on Practice Hill Days and ASH’s annual Advocacy Leadership Institute, members met with over 200 Congressional offices advocating to protect federal funding for biomedical research and prevent Medicaid cuts.
  • To support members, ASH used the #Fight4Hematology Action Hub to launch a comprehensive advocacy toolkit that explains how to engage with Congress, and provides issue-specific resources on Research Funding and Medicaid, Sickle Cell Disease, and Physician Reimbursement. ASH also created downloadable NIH funding state fact sheets to help members highlight how proposed NIH cuts would affect their own states.

Please refer to the additional sections of this report to learn more about the specific policy areas ASH focused on in 2025.

• On February 25, 2025, ASH joined 600 organizations in a letter urging Congress to provide robust fiscal year (FY) 2025 funding for NIH and protect against cuts to the agency.
• On March 15, 2025, nearly halfway through FY 2025, President Trump signed a continuing resolution (CR) to extend government funding until the end of FY 2025. The Full-Year Continuing Appropriations and Extensions Act cut non-defense funding by roughly $13 billion and increased defense spending by about $6 billion. Funding for NIH was extended at FY 2024 levels, with the exception of adjusting funding for programs authorized by the 21st Century Cures Act to the level of $127 million (or $280 million below the FY 2024 level). The bill also included a 57 percent cut to the Congressionally Directed Medical Research Program, which supports research in both classical and malignant hematologic conditions, including sickle cell disease and blood cancers.

In early 2025, ASH began advocating for FY 2026 funding across multiple agencies, with a strong emphasis on securing robust support for NIH and CDC in the Senate and House Labor, HHS, Education, and Related Agencies (Labor-HHS) Appropriations bills. While the bill has not yet passed, both chambers have introduced their respective versions, and ASH continues to advocate for increased research funding.

• On April 28, 2025, ASH sent a letter encouraging newly confirmed Director of the National Institutes of Health (NIH), 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.
• On April 8, 2025, ASH submitted a statement to the House Appropriations Subcommittee on Labor-HHS regarding FY 2026 funding. In its submission, ASH respectfully requested consideration of the following funding levels: $51.303 billion for NIH and at least $11.581 billion for CDC, including at least $10 million for the Sickle Cell Data Collection Program at CDC. ASH submitted a similar statement to the Senate Labor-HHS Appropriations Subcommittee in June.
• In response to the proposals to cut the NIH budget, ASH submitted a statement to the Senate Committee on Appropriations for its hearing, “Biomedical Research: Keeping America’s Edge in Innovation,” at the end of April 2025. In its statement, ASH advocated for strong support of NIH-funded research and urged the committee to continue providing adequate and sustained investments in the agency.
• In late May 2025, the Administration released its full proposed FY 2026 budget, seeking drastic cuts in funding of nearly 40 percent (approximately $18 billion) to NIH. If passed by Congress, the Administration’s proposal would reverse decades of bipartisan commitment to biomedical research, significantly limit opportunities for emerging investigators, and weaken the nation’s research capacity.
  • ASH issued a statement in response to the release of the NIH budget overview, noting that a nearly 40 percent reduction in funding would devastate essential progress in hematology research and unnecessarily endanger patients living with blood disorders.
  • In response, ASH also launched its Take Action in Support of Federal Research Funding Campaign, urging members and their colleagues to contact their representatives and oppose the proposed cuts. To date, over 500 participants have generated more than 2,200 emails to Congress and social media posts. ASH also encouraged members to complete a survey on how the Administration’s changing policies and looming policy cuts are affecting their research and to engage their patients in these advocacy efforts.
  • As a result of ASH’s advocacy, alongside that of many partner organizations, both the Senate and House Appropriations Committees rejected the Administration’s budget cuts and instead included increases for NIH funding.
• Although both the House and Senate Appropriations Committees made progress in advancing their respective FY 2026 Labor-HHS appropriations bills through the committee process, neither chamber was able to advance the bills to floor consideration. Congress was unable to reach a final agreement on any FY 2026 spending bills prior to the start of the new fiscal year on October 1, 2025, resulting in a shutdown of all non-essential functions of the federal government. After 43 days, Congress passed – and the President signed into law – a continuing resolution to reopen the government on November 12 and temporarily extend funding for federal agencies and programs until January 30, 2026, ending the longest government shutdown in U.S. history. After 43 days, Congress passed – and the President signed into law – a continuing resolution to reopen the government on November 12, 2025, and temporarily extend funding for federal agencies and programs until January 30, 2026, ending the longest government shutdown in U.S. history.

Over the past few years, ASH expanded its engagement with the DoD and has advocated for CDMRP funding with Congress. In 2025, CDMRP faced significant proposed cuts, similar to other federal agencies. In response, ASH increased its advocacy efforts in support of sustained and enhanced funding for CDMRP programs.

• On April 30, 2025, in advance of the Senate Appropriations Committee’s bipartisan hearing, Biomedical Research: America’s Edge in Innovation, ASH highlighted the critical role of the CDMRP in advancing innovative research across both classical and malignant hematologic conditions. ASH noted that CDMRP received a 57 percent funding cut under the FY 2025 continuing resolution and urged Congress to fully restore funding in FY 2026.
• On May 19, 2025, ASH, along with the Defense Health Research Consortium (DHRC) sent a letter to congressional leadership urging continued support for CDMRP funding in FY 2026; and in November, the Society joined over 150 organizations calling congress to enact the FY 2026 Defense Appropriations Act and protect critical CDMRP funding.

• ASH is grateful for the engagement of its Grassroots Network members who, throughout 2025, urged Congress to support federal medical research and public health program funding, and additional ASH advocacy priorities. Members utilized the ASH Advocacy Center to find sample letters and social media messaging supporting ASH’s advocacy priorities. ASH encourages members interested in advocacy to join the Grassroots Network to receive regular updates about the Society’s advocacy efforts impacting hematology and information about how to contact their Congressional delegation.
• On June 18, 2025, the Society held a virtual advocacy training, where participants heard about ASH’s Fight4Hematology campaign; learned how to effectively engage with elected officials; learned about ASH’s top policy priorities; and received the tools to help influence real change for hematologists and patients. Speakers included 2025 ASH President, Dr. Belinda Avalos, ASH Chief Policy Officer, Suzanne Leous, and ASH’s policy consultants.
• One of the most visible ways for the Society to advocate for hematology issues continues to be through meetings with Members of Congress and their staff. In 2025, ASH staff and members held more than 200 in-person and virtual meetings with Congressional offices throughout the year to advocate for the Society’s policy priorities.
  • Throughout the year, the Society conducted District visits for the first time. ASH held over 20 District visits, expanding advocacy for NIH funding while strengthening local engagement and elevating member voices at the federal level.
  • On February 25, 2025, members of the Committee on Government Affairs met with nearly 30 congressional offices in support of ASH’s federal funding priorities, including funding for the NIH and funding for the CDC Sickle Cell Data Collection Program.
  • In early September 2025, ASH hosted the annual ASH Advocacy Leadership Institute. Twenty-five ASH members from across the U.S., with diverse experience and hematologic interests and representing both practice and research settings, spent the first day of the workshop at ASH headquarters, learning about the legislative process and health policy, and receiving training on how to be an effective advocate. The following day, the participants visited nearly 50 congressional offices to advocate for two of ASH’s policy priorities: sustained and consistent increases in funding for the NIH; and recruitment of additional co-sponsors for the Sickle Cell Disease Comprehensive Care Act (H.R. 5178/S. 721). Applications for the 2026 cohort will open in early 2026.
  • Also in September, ASH sponsored the 13th annual Rally for Medical Research Hill Day. Participants from more than 350 partnering organizations, including ASH, met in-person with congressional offices in support of funding for NIH.

• On January 1, 2025, a 2.83 percent cut to physician payment went into effect. In early February, ASH joined over 120 organizations in signing an American Medical Association (AMA) letter urging Congress to address ongoing pressures on physician payment and provide physicians with a two percent increase to address rising costs by including the Medicare Patient Access and Practice Stabilization Act of 2025 in a budgetary package. In March, ASH also joined a coalition letter led by the American College of Surgeons to the House of Representatives calling for mitigation to the cut and urging the inclusion of the Medicare Patient Access and Practice Stabilization Act of 2025.
• Following the release of CMS’ finalized CY 2026 Medicare Physician Fee Schedule (CMS-1832-F) in November 2025, ASH collaborated on a joint letter to Congress urging action to stop the arbitrary cut to facility-based practice expense. The letter to Congress highlights how this broad payment cut will directly impact various specialties, including an example from ASH about how a cut of this proportion, especially for hematology services delivered in the facility setting, will impact patient access to care and continue to put pressure on already strained workforce.

FY 2025 Medicare Physician Fee Schedule (MPFS)

• CMS released the FY 2026 Medicare Physician Fee Schedule (MPFS) proposed rule on July 14, 2025. ASH submitted comments in September responding to several key provisions, including updates to the conversion factor, CMS’s proposal to reduce indirect practice expense (PE) payments for services delivered in facility settings, the newly proposed “efficiency adjustment” that would reduce work RVUs for many non-time-based services, and CMS’s decision not to incorporate updated PE/hour data. ASH also provided feedback on payment policies affecting the use of innovative therapies such as CAR T-cell therapy, emphasizing the potential impact of these changes on hematology practices and the importance of maintaining adequate, stable reimbursement to support patient access to high-quality care. in September responding to several key provisions, including updates to the conversion factor, CMS’s proposal to reduce indirect practice expense (PE) payments for services delivered in facility settings, the newly proposed “efficiency adjustment” that would reduce work RVUs for many non-time-based services, and CMS’s decision not to incorporate updated PE/hour data. ASH also provided feedback on payment policies affecting the use of innovative therapies such as CAR T-cell therapy, emphasizing the potential impact of these changes on hematology practices and the importance of maintaining adequate, stable reimbursement to support patient access to high-quality care.
• On October 31, 2025, CMS released the MPFS final rule for CY 2026. A detailed summary of the final rule as well as a comment comparison chart of the provisions the Society commented on can be found on the ASH federal rule summaries webpage. The final rule, which will be effective on January 1, 2026, updates payment policies and payment rates for Part B services furnished under the MPFS, as well as makes changes to the Quality Payment Program (QPP). CMS finalized significant policy changes that align with the administration’s priorities, including new payment policy to negatively adjust work Relative Value Units (RVUs) that account for efficiency gains over time, the creation of policy to cut practice expense amounts for services performed in the facility setting, expansion of behavioral health initiatives, and making permanent changes to some telehealth provisions.

CY 2026 Hospital Outpatient Prospective Payment System (OPPS) and Ambulatory Surgical Center (ASC) Rule

• On July 15, 2025, CMS released the CY 2026 Hospital Outpatient Prospective Payment System (OPPS) and Ambulatory Surgical Center (ASC) Payment System proposed rule, which included updates to payment rates, quality measures, the inpatient-only (IPO) procedure list, and other outpatient policy changes. The rule also proposed reducing payment for certain drug administration services furnished in excepted off-campus outpatient departments to address site-of-service payment disparities, and introduced new criteria for Graduate Medical Education (GME) programs. Notably, CMS did not include the electronic clinical quality measure (eCQM) for timely pain treatment in sickle cell disease (SCD), a measure ASH invested in developing and that had been recommended for inclusion in the Rural Health Quality Reporting Program. ASH did not comment on the 2025 proposed rule but continued to monitor the rule to share updates with members.
  • On September 11, 2025, ASH joined the AMA and House of Medicine on a letter to the Centers for Medicare & Medicaid Services (CMS) about the proposed updates to the 2026 Quality Payment Program underscoring the importance for CMS to maintain a robust portfolio of quality measures that enable quality improvement in addition to promoting accountability.
• On November 21, CMS released the Hospital Outpatient Prospective Payment System (OPPS) and Ambulatory Surgical Center (ASC) Payment System final rule for CY 2026. On November 21, 2025, CMS released the Hospital Outpatient Prospective Payment System (OPPS) and Ambulatory Surgical Center (ASC) Payment System final rule for CY 2026. The final rule is accompanied by a fact sheet and a press release. The agency finalized policy to address site-of-service payment differentials for certain drug administration services delivered in accepted provider-based departments (PBDs). Specifically, CMS will reduce payments in excepted off-campus outpatient departments to 40 percent of the OPPS rate, with an exemption for sole community hospitals. For more information on these policies and others finalized in the rule, ASH has prepared a summary of the final rule.

FY 2026 Inpatient Prospective Payment System (IPPS) Rule

• On June 4, 2025, ASH submitted comments to CMS on the FY 2026 Inpatient Prospective Payment System (IPPS) proposed rule (CMS-1833-P). The Society emphasized the need for more accurate reimbursement policies for cell and gene therapies, noting that the continued use of a single MS-DRG for all immunotherapies does not reflect the significant variation in clinical intensity and resource use faced by physicians and hospitals delivering these treatments. ASH also reiterated that payment mechanisms, including New Technology Add-on Payments (NTAP), should not influence clinical decision making at the point of care, and urged CMS to ensure that future policy changes support equitable, high-quality treatment for patients with complex hematologic conditions.,), should not influence clinical decision making at the point of care, and urged CMS to ensure that future policy changes support equitable, high-quality treatment for patients with complex hematologic conditions.
• On July 31, 2025, CMS released the FY 2026 Inpatient Prospective Payment System (IPPS) final rule and fact sheet. Policies included in the final rule are expected to increase hospital payments by $5 billion. The payment rate for general acute care hospitals that successfully participate in the Hospital Inpatient Quality Reporting (IQR) program and are meaningful electronic health record users is 2.6%. The final rule iterated the agency's methodology for MS-DRG assignments regarding CAR T-cell therapies, approved two blood disorder treatment products for an NTAP, and removed three measures for social drivers of health from the IQR program. For more information on these policies and others finalized in the rule, ASH prepared a summary of the final rule.

Medicare Administrative Policies and Regulatory Reform

• On January 27, 2025, ASH submitted comments on the CMS Contract Year 2025 Policy and Technical Changes to the Medicare Advantage (MS) Program and Part D proposed rule. ASH’s comments addressed improvements in data collection and transparency for the use of prior authorization, the importance of guardrails for the responsible integration and the use of artificial intelligence (AI) technologies, and revisions to administrative policy affecting dually eligible enrollees. ASH’s comments addressed improvements in data collection and transparency for the use of prior authorization, the importance of guardrails for the responsible integration and the use of artificial intelligence (AI) technologies, and revisions to administrative policy affecting dually eligible enrollees.
• On April 30, 2025, the Centers for Medicare & Medicaid Services (CMS) hosted a Town Hall for clinicians and researchers to share more about their experiences prescribing and/or managing treatment of selected drugs on the 2027 list of medications for the CMS Drug Negotiation Program. The Society's Committee on Practice Chair Mary-Elizabeth Percival and Vice Chair John Burke were both selected to speak at the Town Hall and elevate the importance of access to acalabrutinib and pomalidomide for hematologic conditions.
• ASH submitted comments responding to an RFI issued by the Centers for Medicare & Medicaid Services about Unleashing Prosperity through Deregulation of the Medicare Program. The RFI included several questions related to regulatory relief and the impact of administrative burden on physicians and their patients. The Society commented on the administrative burden of the Medicare Laboratory Date of Service Rule, or 14-day rule, the importance of extending telehealth flexibilities to support access to care, and the notable time and resources needed to adequately handle prior authorization and step therapy processes.

• On June 26, ASH hosted the annual Carrier Advisory Committee (CAC) Network meeting, facilitating an opportunity for hematology CAC representatives and practicing members to meet, network, and strengthen relationships with the Contractor Medical Directors (CMDs) from Medicare Administrative Contractors (MACs). On June 26, 2025, ASH hosted the annual Carrier Advisory Committee (CAC) Network meeting, facilitating an opportunity for hematology CAC representatives and practicing members to meet, network, and strengthen relationships with the Contractor Medical Directors (CMDs) from Medicare Administrative Contractors (MACs). Stakeholders have the chance to interact and provide input on coverage policies impacting patient access to care, as well as receive information which may help members understand Medicare policy and reimbursement. Topics discussed during the 2026 CAC meeting included innovations in Artificial Intelligence (AI) and how AI is impacting hematology practice, a third installment on NGS testing focused on lymphoid malignancies, an update on the impact of the new language in National Coverage Determination (NCD) 110.23 on Myelodysplastic Syndrome and continued coverage challenges, and a Fireside Chat with three Medicare Administrative Contractor Medical Directors on how coverage policy is developed and ways for CAC members to be engaged in the process.
  • In November 2025, ASH received a request for feedback from CMS on NCD 90.2 and coverage for NGS testing. ASH is currently engaging with the Agency to recommend updates to the NCD that support more consistent coverage for these tests while drafting a policy that reflects the rapidly evolving science for NGS testing and its clinical applications.

Sickle Cell Disease Comprehensive Care Act 2025

• In 2025, ASH collaborated with congressional SCD champions to reintroduce and advance the Sickle Cell Disease Comprehensive Care Act in the 119th Congress. This bipartisan legislation expands the existing Medicaid Health Home program, to allow states to submit a state plan amendment (SPA) to establish a Health Home with SCD as the single qualifying condition for eligibility. The bill aims to ensure that individuals with SCD who are covered by Medicaid have better access to comprehensive, high quality, outpatient care, including recommended clinical, mental health, ancillary, and support services.
  • In late February 2025, longtime SCD champions Senators Tim Scott (R-SC) and Cory Booker (D-NJ) reintroduced the Senate version of this legislation (S. 721).
  • On September 8, 2025, during Sickle Cell Awareness Month, as a result of ASH’s ongoing advocacy, Representative Neal Dunn (R-FL) joined long-time SCD champion Representative Danny Davis (D-IL) in introducing the House version of the bill (H.R. 5178). Nineteen additional House members joined Representatives Dunn and Davis as original cosponsors of the bill.
• ASH members and staff continued to meet with congressional offices throughout 2025 to gain support for the legislation. The Committees on Government Affairs and Practice, as well as participants in the 2025 ASH Advocacy Leadership Institute (ALI) met with nearly 50 congressional offices on Capitol Hill to urge Members of Congress to support and cosponsor the Sickle Cell Disease Comprehensive Care Act.
• On October 29, 2025, ASH led over 70 organizations in sending a letter to the House Energy and Commerce Subcommittee on Health urging them to prioritize the Sickle Cell Disease Comprehensive Care Act in an upcoming deliberation and/or markup.

In 2026, ASH will continue to advocate for the passage of this legislation. If you are interested in supporting this effort, you can contact your representative through our SCD advocacy campaign here.

• For additional information about ASH’s 2025 advocacy to urge Congress to support funding for the CDC’s Sickle Cell Data Collection program and other federal SCD programs, please see the 2025 ASH Research and Public Health Funding Advocacy Highlights.

 

ASH continued to work with partners from the SCD community to advance sickle cell priorities in 2025. The Society presented the 2025 ASH Outstanding Service Award to the Sickle Cell Disease Association of America, the Sickle Cell Consortium, and Sick Cells, for their vital partnership and unified advocacy with ASH over the past decade to advance sickle cell-related policies, awareness, and efforts.

• As part of its broader advocacy urging Congress to oppose Medicaid cuts and protect beneficiaries with hematologic conditions, including SCD, ASH joined sickle cell community groups in sending letters to the House and Senate underscoring Medicaid’s critical role in the sickle cell community.
• ASH along with other members of the Sickle Cell Disease Partnership, a multi-sector collaboration of SCD stakeholders, advanced coordinated federal advocacy to improve outcomes for people with SCD.
• The group submitted multiple letters urge federal agencies and Congress to strengthen SCD policy. Actions included requesting CMS flexibility on Medicaid community engagement requirements, and urging CDC to preserve the Sickle Cell Data Collection Program.
• The Partnership also issued a CMS transition letter, highlighted Medicaid’s importance for individuals with SCD, published the Blueprint for Action: Improving Access to Treatment and Community Services for Adults with Sickle Cell Disease, and hosted a webinar on innovative models of care for SCD and the impact in investing in SCD infrastructure.

In 2025, ASH continued to collaborate with and advise the US Department of Health and Human Services (HHS) on sickle cell-related matters. Building on its longstanding engagement with federal partners, ASH focused significant attention this year on the rapid restructuring occurring across HHS agencies such as the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA), as well as on the Medicaid cuts and their impacts on the sickle cell community.

ASH also continues to engage in broader SCD-related discussions with the Centers for Medicare & Medicaid Services (CMS) and the Agency’s various Centers about SCD.

• Please see ASH’s 2025 Highlights of Advocacy to Address Research and Regulatory Changes for more information on ASH’s engagement with the CDC and HHS regarding federal workforce reductions and their impact on populations affected by SCD.

As part of ASH’s long-time advocacy on sickle cell trait, the Society issued a press release  and  updated position statement reaffirming that no scientific evidence links sickle cell trait (SCT) to sudden death. This follows the publication of a systematic literature review in Blood, titled “Sickle Cell Trait Does Not Cause ‘Sickle Cell Crisis’ Leading to Exertion-Related Death: A Systematic Review.” This systematic literature review found no evidence to support that physical exertion without rhabdomyolysis (muscle breakdown) or heat injury can cause sudden death for individuals with SCT, nor is there any high-level evidence that SCT causes acute pain crises.

• On February 24, 2025, ASH joined more than 500 organizations in signing an open letter to the Trump Administration, advocating for the prioritization of women’s health research. The letter called for greater scientific accuracy, increased funding, a streamlined U.S. Food and Drug Administration (FDA) approval process, improved access to care and innovation, CMS reimbursement for women’s health services, enhanced maternal, mental health, and gynecological care, and stronger inter-agency collaboration.
• On April 9, 2025, ASH joined a sign-on letter with 48 other organizations to urge Congress to reject Medicaid cuts that would create barriers for pregnant or postpartum people, children, and families.
• In recognition of ongoing challenges and its commitment to improving maternal health outcomes, ASH published the second edition of its Maternal Health Compendium, bringing together 26 key articles from ASH’s Blood journal portfolio that highlight the critical intersection of hematology and maternal health.

• On June 3, 2025, the Improving Access to Transfusion Care for Hospice Patients Act (S. 1936) was reintroduced in the U.S. Senate by Senators Jacky Rosen (D-NV), John Barrasso (R-WY), and Tammy Baldwin (D-WI). The bill would establish a separate payment pathway for transfusion services within the Medicare hospice benefit, helping to improve hospice care for patients who rely on transfusion care to maintain quality of life. The creation of innovative reimbursement models such as this is one of the recommendations of the ASH Statement in Support of Palliative Blood Transfusions in Hospice Setting.
• In 2025, the CDC’s Advisory Committee on Immunization Practices (ACIP) underwent a complete change in membership and has convened several meetings to discuss the child and adolescent vaccine schedule, hepatitis B vaccine recommendations, and other issues. ASH submitted the following letters regarding ACIP and the topics under review:
  • In July, in response to recent changes in the immunization review process, the Society joined two letters: an open letter from the medical and public health community to the American public, and a coalition letter with the American Medical Association House of Medicine to Secretary Kennedy urging the reinstatement of the ACIP membership.
  • On September 11, 2025, ASH submitted a letter in advance of the September 18–19 ACIP meeting, urging the Committee to maintain the current child and adolescent vaccine schedule, emphasizing that vaccinations are critical for individuals with hematologic conditions who are often immunocompromised and warning that restricting vaccine access would endanger patients, their families, and the broader community.
  • In late November 2025, ASH submitted comments ahead of the December 4–5 ACIP Meeting, reinforcing the Society’s position not to make changes to the child and adolescent vaccine schedule, and underscoring key considerations related to vaccine safety, and Hepatitis B vaccination.
• On October 31, 2025, the Society joined a coalition of organizations in sending a letter to U.S. Department of Homeland Security Secretary Noem requesting a national interest exemption for pathologists and medical and public health laboratory professionals from the proposed $100,000 H-1B fee. At a time of critical workforce shortages, the letter emphasized that additional hiring barriers could further strain the laboratory workforce and limit patient access to essential medical services. The Society also signed an AMA letter about this issue earlier in September 2025.
• Telehealth flexibilities are critical for supporting access to care, particularly for patients in rural areas and those with high-acuity conditions.
  • On February 24, 2025, ASH, along with over 350 organizations, joined the Alliance for Connected Care in a sign-on letter advocating for the continuation of telehealth flexibilities. The letter demonstrates the urgent need for continued telehealth flexibilities, highlighting the bipartisan 2022 legislation that extended telehealth flexibilities through December 2024.
  • In August 2025, ASH joined 344 other health care organizations in signing a stakeholder letter urging congressional leadership to ensure that Medicare beneficiaries can continue to access telehealth services beyond September 2025.
  • On September 30, 2025, when the government ceased operations related to the shutdown, telehealth flexibilities came to an abrupt halt and reverted to the payment rules in effect prior to the pandemic. While Congress had previously stepped in with temporary extensions for telehealth flexibilities, failure to do so in 2025 left many Americans without telehealth services and limited access to care during the shutdown period. ASH communicated these changes with members through the October Practice Update and Advocacy Update Newsletters. ASH also joined a coalition letter with over 450 other health care organizations urging Congress to act on a long-term telehealth fix in the next legislative package.

On October 1, 2025, a government shutdown delayed progress on a funding agreement, as lawmakers remained at an impasse over a spending bill and health care policy provisions related to the expiration of premium tax credits for the Affordable Care Act (ACA) marketplace. In response, the Society remained actively engaged and continued its advocacy efforts on the issue.

• On September 25, 2025, ASH joined the AMA and 90 other medical societies and health care organizations on a letter to Congress advocating for the extension of the enhanced advanced premium tax credits (APTCs). These credits lower the cost of health insurance plans purchased through the Health Insurance Marketplaces and have helped make coverage more affordable for the more than 24 million Americans in 2025, including older adults, individuals in rural communities, and small business owners.
• ASH issued an action alert in December urging members to contact their elected officials about the need to extend enhanced APTCs. The alert directed members to the email campaign, “Affordability is Access: Take Action in Support of Extending Advance Premium Tax Credits for ACA Health Plans."

Medicaid is a critical healthcare program funded by the state and federal government that provides coverage for approximately 80 million Americans. In 2025, the program faced significant threats as the new Trump Administration and lawmakers called for policies to reduce federal spending, including potential cuts to Medicaid. In response, ASH expanded its advocacy to protect Medicaid patients, particularly those living with hematologic conditions.

• On March 28, 2025 ASH joined health care organizations and delegations within the American Medical Association’s (AMA) House of Delegates (HOD) in signing a letter urging the AMA to use its respected voice among policy makers to protect the Medicaid program and reinforce its critical role in ensuring access to care for all Americans.
• As Congress explored options to offset the Administration’s budget priorities through the congressional budget reconciliation process, ASH launched a survey to better understand the impact of how potential cuts to Medicaid funding could affect hematology practices and the patients they serve. The survey was distributed to ASH members in April 2025.
• Following the Committee on Practice Spring business meeting, committee members visited Capitol Hill to advocate for key ASH policy priorities. A major focus of these visits was urging Congress to oppose cuts to Medicaid, with members sharing firsthand stories of how the program supports care for vulnerable individuals living with hematologic conditions.
• After Congressional Republicans passed a budget resolution in April, formally initiating the reconciliation process, ASH launched a member email campaign urging lawmakers to oppose cuts to Medicaid. To date, over 200 members have taken over 600 actions, reaching their lawmakers in support of protecting the program.
• On May 22, the One Big Beautiful Bill Act (H.R. 1) passed in the House of Representatives by a vote of 215-214. In June, the Society sent a letter to Senate Leadership expressing concern about the bill and highlighting the devastating impact that proposed changes to the Medicaid program could have on individuals with hematologic conditions who rely on Medicaid for their care.
  • H.R. 1 was signed into law on July 4, 2025. Following enactment, ASH issued a statement expressing profound disappointment with the Medicaid cuts included in the bill.
• On November 24, 2025, ASH sent a letter to CMS and HHS leadership regarding the implementation of the community engagement requirements of the One Big Beautiful Bill Act (OBBBA). The law requires states to impose community engagement requirements for adults in the Medicaid expansion population aged 19–64, where enrollees will be required to complete 80 hours of qualifying activities per month (i.e., work, community service, work program, half-time education, or income equivalent) to maintain their Medicaid eligibility. Importantly, Congress considered the health care coverage needs of those living with serious medical conditions and provided mandatory exceptions from these community engagement requirements to be further defined via regulation.
  • ASH urged the Administration to make certain that the exceptions are defined in a manner that protects those with serious and complex hematologic conditions who rely upon Medicaid coverage. Additionally, the Society recommended the administration to develop redetermination policies that do not create delays or barriers to timely access to care for those in excluded populations.

ASH urged the Administration to make certain that the exceptions are defined in a manner that protects those with serious and complex hematologic conditions who rely upon Medicaid coverage. Additionally, the Society recommended the administration to develop redetermination policies that do not create delays or barriers to timely access to care for those in excluded populations.

ASH continues to respond to the FDA’s draft guidance that intersects with hematology and the Society’s priorities, including the following comment letters:

• March 2025 letter re: Considerations for the Use of Artificial Intelligence to Support Regulatory Decision-Making for Drug and Biological Products; Guidance for Industry and Other Interested Parties
• September 2025 letter re: FDA Draft Guidance on Myelodysplastic Syndromes: Developing Drug and Biological Products for Treatment
• October 2025 letter re: FDA’s Draft Guidance on Assessment of Overall Survival in Oncology Trials

ASH also partnered with the FDA on the following joint educational programs:

• The ASH-FDA Speaker Series relaunched in 2025, a program in which an ASH expert presents an educational seminar to agency staff on important topics in hematology, with new topics, more FDA groups involved, and more frequent programs. The 2025 series included over five programs addressing timely topics that span across the classical and malignant hematology portfolios.
• On September 29-30, 2025, ASH and FDA hosted the fourth annual ASH/FDA Collaboration: A Workshop on Regulatory Science in Hematology, which convened 20 select participants, ASH Workshop Co-Chair Dr. Irene Ghobrial, and nearly 70 FDA leaders and staff for an interactive program. The Workshop explored hematology product development and key regulatory issues through dynamic panels and case-based discussions.
• In conjunction with the ASH Annual Meeting in early December, the Society and Agency co-hosted the annual ASH-FDA Joint Symposia on Newly Approved Therapies entitled: (1) New Frontiers in Rare Hematology - From Replacement to Reinvention; and (2) From Approval to Action - New Therapies, Multi-Regional Studies, and Post-Market Insights.