ASH Members Meet With Congress to Fight for NIH Funding and Patients With Sickle Cell Disease

In March, members of the ASH Committee on Government Affairs spent two weeks meeting virtually with legislators in Washington, DC, to advocate for increased funding for the National Institutes of Health (NIH), funding for the Centers for Disease Control and Prevention (CDC) Sickle Cell Data Collection program, and support for legislation to increase access to care for individuals living with sickle cell disease (SCD). Although many COVID-19 restrictions were being eased at that point, Capitol Hill remained closed to in-person visits, forcing ASH members to continue virtual advocacy efforts.

To learn more about ASH's ongoing advocacy efforts, The Hematologist spoke with the newly appointed ASH Committee on Government Affairs Vice Chair Dr. Bart Scott. Dr. Scott is a hematologist-oncologist at the Fred Hutchinson Cancer Research Center in Seattle and served on the Committee on Government Affairs for more than eight years before becoming the committee's new vice chair.

“ASH members met with more than 30 congressional offices, many of whom sit on key congressional committees with jurisdiction over ASH's policy priorities,” Dr. Scott explained. “The fact that in-person meetings have remained on hold hasn't stopped us from meeting with legislators and making sure that the concerns of hematologists are heard.”

The advocacy meetings took place at a very important time in Washington, as Congress had just finalized funding levels for federal agencies and programs for fiscal year (FY) 2022 and was quickly turning its attention to the start of the FY 2023 budget process. This provided ASH advocates a prime opportunity to both thank lawmakers for providing NIH and the CDC Sickle Cell Data Collection program with increased funding for FY 2022 and urge them to continue to support funding for these important programs in FY 2023 and beyond.

“Funding for NIH has always been a key advocacy issue for ASH, and the CDC's Sickle Cell Data Collection program has been a pillar of the Society's advocacy efforts for several years. ASH's advocacy efforts led to this program receiving funding through the congressional appropriations process for the first time in FY 2021,” explained Dr. Scott. “ASH advocates were able to show the importance of this program, and Congress acted.”

The Sickle Cell Disease Comprehensive Care Act (H.R. 6216/S. 3389), which was recently introduced in Congress, was also part of the conversation between members of the committee and congressional offices. ASH members sought cosponsors in both the House and Senate for this bipartisan bill, which creates a demonstration program in up to 10 states, with the goal of improving access to comprehensive, high-quality, outpatient care for individuals with SCD enrolled in Medicaid. ASH advocacy and the hard work that ASH Grassroots Network members did by writing and calling their legislators about this important piece of legislation already led to the addition of several cosponsors on the House bill.

The Society needs your help in contacting your legislators on all these and other important issues affecting hematology research and practice. “ASH members don't have to serve on the Committee on Government Affairs to take part in ASH advocacy,” said Dr. Scott. “In fact, anyone can get involved in advocacy, and ASH makes it easy with numerous resources that anyone can access.”

There are 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.

“It's easy to get frustrated with the way Washington works, but it's so important to stay engaged,” said Dr. Scott in closing. “Most of the issues we advocate for are built on previous legislative victories, [so] ASH members really are making a difference!”