The start of the 117th Congress has reenergized ASH’s advocacy on Capitol Hill, with the Society’s efforts this year seeking to build on several successes ASH advocates helped achieve in 2020.

ASH celebrated the increases in funding for public health programs and medical research that were included in the fiscal year (FY) 2021 omnibus spending bill, passed and signed into law at the end of December 2020. This omnibus spending package contained COVID-19 relief provisions as well as annual funding for federal agencies and programs. The final spending bill included slightly more than $42.9 billion in funding for the National Institutes of Health (NIH), a $1.25 billion increase over funding for the previous year. The package also provided NIH with $1.25 billion in emergency funding for research and clinical trials related to COVID-19.

The Centers for Disease Control and Prevention (CDC) received a special infusion of more than $8.75 billion to help with the distribution of COVID-19 vaccines and saw an increase in standard funding of $124 million, for a total funding level of more than $6.96 billion for FY 2021. Within this funding, ASH was also pleased to see the inclusion of $2 million to support CDC’s sickle cell data collection efforts. This represents the first time the CDC Sickle Cell Data Collection Program has received funding through the appropriations process and is a huge victory for one of ASH’s top advocacy priorities. The funding will allow the CDC to continue and expand its current data collection program and work to address the need for comprehensive and coordinated care for individuals living with sickle cell disease (SCD). ASH advocates have been working to secure dedicated funding since the program was authorized in the Sickle Cell Disease and Other Heritable Blood Disorders Research Surveillance, Prevention, and Treatment Act of 2018 (P.L. 115-327).

Additionally, the Sickle Cell Disease Regional Demonstration Program at the Health Resources and Services Administration (HRSA), which provides grant funding to academic medical centers that care for individuals with SCD, received an additional $2 million for a total funding level of $7.205 million in FY 2021. ASH advocated for an increase to this program and was pleased to see the additional funding for this program included in the omnibus bill.

None of these advocacy victories would have been possible without the dedicated effort of ASH Grassroots Network members who continued to send letters, make phone calls, and meet virtually with legislators. Even through all the difficulties that the COVID-19 pandemic brought, ASH members sent more than 900 letters to Capitol Hill and conducted nearly 100 virtual meetings throughout 2020 in support of ASH’s policy priorities, including NIH and public health funding. These efforts were instrumental in securing the positive funding increases seen in the FY 2021 omnibus spending package.

Looking to build on these successes in next year’s budget, the Society has joined with more than 300 patient groups, scientific societies, research institutions, health professionals, educators, and industry organizations to recommend a program level of at least $46.1 billion for NIH in FY 2022, a $3.2 billion increase over the comparable FY 2021 funding level, which would allow for NIH’s base budget to keep pace with the biomedical research and development price index and allow meaningful growth of 5 percent. ASH will also be working with members of the sickle cell advocacy community to ensure that both the CDC Sickle Cell Data Collection Program and the HRSA Sickle Cell Disease Regional Demonstration Program receive the funding necessary to maintain and expand the programs in the FY 2022.

Appropriators will work throughout the spring and summer months to craft FY 2022 spending proposals, with the goal of having the bills voted on and signed into law before the start of FY 2022 on October 1, 2021.

The Society needs your help in contacting your legislators as Congress begins the annual budget process. Despite the ongoing cancellation of in-person meetings due to the pandemic, legislators want to hear from constituents. ASH members will be conducting virtual visits with the offices of congressional appropriators in the first quarter of 2021 to stress the importance of funding for NIH and other federal public health programs. Staff in the ASH Government Relations and Practice Department are available to help set up virtual meetings with congressional staff over phone or by video conference and provide the information needed for a successful meeting, including fact sheets and talking points on the Society’s priority advocacy issues.

There are also many other ways that you can support ASH’s advocacy efforts and further expand the Society’s message on Capitol Hill. For more information on how you can get involved, including joining the Grassroots Network to receive regular updates and information about how to contact your members of Congress, visit the ASH Advocacy Center at