Each year, your representatives and senators make decisions that profoundly affect a wide range of issues impacting hematology research and practice. The American Society of Hematology (ASH) plays a vital role in influencing policies that affect researchers, clinicians, and patients by educating lawmakers and government staff on these critical issues.
In 2023, ASH has already engaged in a tremendous amount of advocacy activity, which began in early February when ASH President Robert Brodsky, MD; ASH President-Elect Mohandas Narla, DSc; ASH Vice President Belinda Avalos, MD; ASH Secretary Cynthia Dunbar, MD; and ASH Treasurer Joseph Mikhael, MD, returned to Capitol Hill to meet with the office of Rep. Rosa DeLauro, D-CT, the ranking member of the House Appropriations Committee. In addition to discussing funding for the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection program, the ASH officers met with a representative from the Advanced Research Projects Agency for Health (ARPA-H), which aims to promote high-risk, high-reward projects in biomedical research. These meetings provided an opportunity for ASH to learn about ARPA-H priorities, share ASH’s own priorities, and determine areas in which the organizations can work together.
In late March, the Sickle Cell Disease Comprehensive Care Act (H.R. 1672/S. 996) was reintroduced in both the House and Senate. This bipartisan, ASH-supported legislation authorizes the Centers for Medicare and Medicaid Services (CMS) to create a Medicaid demonstration program to improve access to comprehensive, high-quality outpatient care for individuals living with SCD. ASH worked closely with congressional champions who introduced the legislation and issued a statement in support of its passing. Additional ASH-supported legislation that seeks to increase the number of providers caring for individuals with SCD — the Sickle Cell Care Expansion Act — was introduced in both the House and Senate in early May.
After a multi-year hiatus due to the COVID-19 pandemic, March 2023 marked the in-person return of members of the ASH Committee on Government Affairs and Practice to their annual spring Hill Days event. In late March, members of the committee visited Capitol Hill to urge Congress to support funding for NIH and the CDC Sickle Cell Data Collection program and to ask members of Congress to cosponsor the Sickle Cell Disease Comprehensive Care Act. Committee members again visited Capitol Hill in mid-May to urge Congress to cosponsor both the Sickle Cell Disease Comprehensive Care Act and the Sickle Cell Care Expansion Act. ASH also encouraged members of Congress to support legislation designed to stabilize the Medicare Physician Fee Schedule (PFS) by providing an annual, inflationary update to the formula used to calculate physician payments.
Although ASH’s advocacy efforts will continue throughout the remainder of 2023, policy-makers want to hear from their constituents, too. Indeed, the success of these advocacy efforts will depend on the involvement of ASH members across the United States. ASH continuously seeks to expand its reach and increase the number of hematology advocates to promote productive conversations about issues that directly impact hematology research and practice.
To become more involved in hematology-related advocacy, either in Washington, DC, or in their home states, ASH members can start by joining the ASH Grassroots Network to receive regular updates and information on how to contact their congressional representatives. Members of the Grassroots Network also receive alerts when ASH needs advocates to reach out to Congress, as well as our monthly Advocacy Update, which provides news and updates on events in Washington impacting hematology. Additionally, Grassroots Network members are invited to represent hematology interests during visits to Capitol Hill and at meetings with NIH leadership, stakeholders at other regulatory agencies, and congressional leaders back home. To join the ASH Grassroots Network and learn more about advocacy efforts, visit the ASH Advocacy Center at www.hematology.org/advocacy.
