2023 ASH Research and Public Health Funding Advocacy Highlights

ASH continues to advocate for issues impacting hematology research and practice, including research and public health funding, access to quality care for patients, physician payment and coverage for hematologists, and policy issues related to sickle cell disease (SCD). The following overview provides information on advocacy highlights in research and public health funding.

During 2023, ASH continued to be highly visible in our advocacy for federal support of biomedical research and public health funding, including funding for the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Health Resources and Services Administration (HRSA). ASH and other members of the biomedical research and public health communities have strongly urged Congress to provide increased funding for these agencies.

Fiscal Year (FY) 2024 Appropriations for NIH and Federal Public Health Programs

• In spring 2023, ASH joined nearly 400 organizations and institutions in the research community in recommending a program level of at least $51 billion for the NIH in fiscal year (FY) 2024, which would allow NIH’s base budget to keep pace with the biomedical research and development price index and allow meaningful growth of nearly.
• In March 2023, ASH joined nearly 150 organizations and institutions in the public health community in recommending at least $11.581 billion in overall funding for the CDC in FY 2024. This proposed funding level would help reverse years of underfunding which has resulted in many of the CDC’s most effective prevention programs being unable to reach every state.  nearly 150 organizations and institutions in the public health community in recommending at least $11.581 billion in overall funding for the CDC in FY 2024. This proposed funding level would help reverse years of underfunding which has resulted in many of the CDC’s most effective prevention programs being unable to reach every state.
• On March 23, ASH submitted written testimony to the House Appropriations Subcommittee on Labor, Health and Human Services (HHS), Education, and Related Agencies (Labor-HHS) on fiscal year (FY) 2024 funding issues of importance to ASH. ASH’s testimony supported a funding level of at least $51 billion for the NIH, at least $11.581 billion in overall funding for the CDC, at least $10 million in funding for the CDC’s Sickle Cell Data Collection program, and funding for sickle cell disease programs within HRSA. ASH submitted a similar statement to the Senate Labor-HHS Appropriations Subcommittee on May 18.
• ASH has also supported funding for the U.S. Department of Defense (DoD) Congressionally Directed Medical Research Program (CDMRP) and the Peer-Reviewed Medical Research Program, which are allocated via the annual Defense Appropriations bill.

Status of U.S. Public Health Funding

• FY 2024 spending bills have stalled in Congress, forcing the passage of multiple continuing resolutions (CRs) to temporarily extend funding for federal programs and agencies and allow the government to remain open beyond the start of FY 2024 on October 1. 2023. The latest CR, which passed the House on November 14 and passed the Senate the following day, extends government funding to January 19, 2024, for some federal agencies and programs, including the Food and Drug Administration (FDA). Funding for most other public health and research programs – including the NIH and the CDC – is extended through February 2, 2024.
• Until final FY 2024 appropriations bills are passed, public health funding for the NIH, the CDC, and other public health agencies remains at risk.
  • NIH Operations under a CR: At their discretion, institutes and/or centers at the NIH may issue noncompeting research-grant awards at a level below what is indicated in the most recent notice of award; this means that awards will be made at about 80%–90% of the grant. As in previous years, upward adjustments to awarded levels will be considered after the following year’s FY appropriations process is finalized. Salary limitations as well as salary caps remain unchanged until modifications are announced. Additional information is available here.
  • Expansion of the CDC’s Sickle Cell Data Collection Program: Prior to the end of FY 2023, the CDC announced new awards to expand the Sickle Cell Data Collection program from 11 to 16 states (AL, AZ, CA, CO, FL, GA, IN, MI, MN, MO, NJ, NC, RI, TN, TX, WI). Funding, which was doubled in FY 2023, will support the first year of a five-year effort to collect essential population-based data on sickle cell disease (SCD) to analyze SCD-related health care and health outcomes across states and population groups. The expanded program, which is a direct result of ASH’s advocacy, now covers approximately 50% of the U.S. SCD population.

Grassroots Advocacy and Congressional Visits

• ASH is grateful for the engagement of its Grassroots Network members who, throughout the year, urged Congress to support federal medical research and public health program funding, as well as additional ASH advocacy priorities. Members utilized the ASH Advocacy Center to find sample letters and tweets 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 members of Congress.
• 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 2023, ASH staff and members of the Society held nearly 150 in-person and virtual meetings with congressional offices throughout the year to advocate for the Society’s policy priorities.
  • On March 28, members of the Committee on Government Affairs met with more than 35 congressional offices in support of ASH’s federal funding priorities, including FY 2024 funding for the NIH and funding for the CDC Sickle Cell Data Collection program.
  • In September 2023, ASH sponsored and participated in the 11th annual Rally for Medical Research Hill Day. Participants from more than 120 partnering organizations, including ASH, met in-person and virtually with congressional offices in support of funding for NIH.
  • In mid-October, ASH hosted the 11th annual ASH Advocacy Leadership Institute, co-chaired by Drs. Jennifer Holter Chakrabarty and Bart Scott (who also serve as the Chair and Vice Chair of the Committee on Government Affairs, respectively). Twenty-four 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 43 congressional offices to advocate for three of ASH’s policy priorities: sustained and consistent increases in funding for the NIH; increased funding for the CDC Sickle Cell Data Collection program; and recruitment of additional co-sponsors for the Sickle Cell Disease Comprehensive Care Act (H.R. 1672/S. 996). Applications for the 2024 cohort will open in early 2024.

Engagement with Other Federal Partners

• During the March 2023 Committee on Government Affairs Meeting, staff from the DoD presented information on CDMRP, including details about the program’s funding mechanism, the grant review process, and the programs that have hematology-related research. The Committee identified a number of opportunities to support, engage and promote CDMRP’s programs and funding opportunities through ASH’s advocacy, publications, and training programs.
• ASH has been in conversation with staff from the U.S. Veteran’s Administration (VA) about potential opportunities for collaboration, including ways to link ASH’s training programs with the VA; connect the ASH Research Collaborative Data Hub with VA data efforts; and engage in opportunities to address challenges with clinical research, such as involving the VA with ASH’s Stakeholder Engagement in Clinical Trials effort.