2021 Year End Research and Public Health Funding Advocacy Highlights

During 2021, 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 community have strongly urged Congress to provide increased funding for NIH and CDC, noting the increased resources continued to be needed by these agencies due to the COVID-19 pandemic.

Below are some of the highlights of the Society’s 2021 advocacy efforts in support of research and public health funding.

FY 2022 Appropriations for NIH and Federal Public Health Programs

• In February 2021, ASH joined more than 360 organizations and institutions in the research community in recommending at least $46.1 billion for the NIH in fiscal year (FY) 2022, a $3 billion (7.4 percent) increase over the NIH’s program level funding in FY 2021. This funding level would allow for meaningful growth above inflation in the base budget and would expand the NIH’s capacity to support promising science in all disciplines across the agency.
• ASH is among the more than 325 organizations that have endorsed the bipartisan, bicameral Research Investment to Spark the Economy (RISE) Act (H.R. 869/S. 289), which was reintroduced in both the House and Senate in early February 2021. The legislation authorizes approximately $25 billion in supplemental funding for federal research agencies, including $10 billion directed to the NIH, to mitigate the disruption to federally funded research caused by the COVID-19 pandemic.
• On March 19, 2021 ASH sponsored a letter signed by over 70 organizations to congressional appropriators advocating for, at minimum, $5 million in dedicated funding for the CDC Sickle Cell Data Collection program in the FY 2022 funding bill. The letter also expressed support for maintaining funding for the HRSA Sickle Cell Disease (SCD) Treatment Demonstration program and SCD Newborn Screening program.
• In May 2021, ASH submitted a statement to the House Appropriations Subcommittee on Labor, Health and Human Services (HHS), Education, and Related Agencies (Labor-HHS) supporting at least $46.1 billion for NIH in FY 2022, as well as funding for the CDC and sickle cell programs at HRSA. The Society submitted a similar statement to the Senate in June 2021.
• The chart below summarizes existing and proposed funding levels for federal research and public health programs of interest to ASH, including the NIH, the new Advanced Research Projects Agency for Health (ARPA-H) proposed in President Biden’s FY 2022 budget request, the CDC Sickle Cell Data Collection program, and the HRSA sickle cell programs.
• Although the House passed most of its appropriations measures over the summer, the Senate failed to complete work on any of its spending bills prior to the start of the new fiscal year and none of the 12 regular appropriations bills for FY 2022 have yet been finalized. As a result, the federal government, including NIH, CDC, and HRSA, is operating under a short-term continuing resolution (CR) that lasts through February 18, 2022. Under this CR, programs are operating at FY 20221 levels and agencies will not see any of the proposed increases noted above until Congress finalizes spending bills before the CR deadline.

Grassroots Advocacy and Congressional Visits

• ASH developed numerous on-line advocacy campaigns for all Grassroots Network members to urge Congress to support federal medical research and public health program funding. Members may visit the ASH Advocacy Center to find sample letters supporting funding for NIH and CDC, including funding for sickle cell data collection efforts at CDC. They can then enter their contact information, and the site will send the letter directly to their Representative and Senators. Information is also included about how to contact Members of Congress via phone or engage via Twitter. During the past year, members of the ASH Grassroots Network sent nearly 1,000 messages to Capitol Hill in support of ASH’s policy priorities, including NIH and public health funding.
• It remains true that one of the most visible ways for the Society to advocate for hematology issues is through meetings with Members of Congress and their staff. This year, ASH staff and members of the Society held numerous virtual meetings with congressional offices throughout the year to advocate for the Society’s policy priorities, including research and public health funding.
  • During March 8–17, 2021, ASH hosted over 20 virtual meetings with congressional appropriators and their staff to urge support for FY 2022 research funding for the NIH, supplemental funding for research impacted by COVID-19, and funding for the CDC Sickle Cell Data Collection program. Participants included members of the ASH Committee on Government Affairs and the ASH Committee on Practice. These meetings helped lay the groundwork to build support for these programs as members of the House and Senate Appropriations Committees begin the process of drafting funding bills for FY 2022.
  • On September 23, 2021, ASH sponsored and participated in the 9th annual Rally for Medical Research Hill Day. Participants from more than 350 partnering organizations, including ASH, met virtually with nearly 280 congressional offices in support of funding for NIH. ASH sent an advocacy alert to the ASH Grassroots Network to coincide with the Rally which generated over 100 emails and tweets to congressional offices.

Fetal Tissue Research

• ASH continued to work with members of the scientific, academic, and patient communities to address the restrictions on research involving the use of human fetal tissue that were announced by the Department of Health and Human Services (HHS) in June 2019.
  • On February 12, 2021, ASH joined over 95 organizations from the scientific, medical, and patient communities in sending a letter to the Department of Health and Human Services (HHS) urging the agency to withdraw a proposed rule issued just before the end of the Trump Administration that would have impacted extramural research involving human fetal tissue (HFT). The letter expressed concern that the additional restrictions in the proposed rule would impede promising biomedical research and hamper the development of new treatments for serious diseases.
  • NIH issued a notice on April 16, 2021, reversing the 2019 restrictions. The notice specifically informed the extramural research community of that research applications proposing the use of human fetal tissue from elective abortions would no longer be subject to review by an Ethics Advisory Board. The notice also indicated that research involving the use of fetal tissue in the NIH intramural research program, which had been prohibited under the 2019 regulations, would be allowed to resume.

Additional materials, comment letters, and testimony concerning ASH advocacy related to research issues and NIH funding can be found on the ASH website.