With in-person meetings on Capitol Hill still on hold in 2021, continued innovation in advocacy was needed to ensure that the voices of hematologists were heard by elected officials. Looking back on the past year, ASH advocates made tremendous progress in advancing many of ASH's key policy priorities, including funding for the National Institutes of Health (NIH), issues impacting individuals with sickle cell disease (SCD), and improving access to palliative and hospice care for hematology patients.

To learn more about the accomplishments and challenges that ASH advocates experienced in 2021, The Hematologist sat down with ASH Committee on Government Affairs Chair Dr. Jennifer Holter Chakrabarty. “This past year continued to force us to think outside of the box, but in many ways, this has allowed us to expand our reach in advocacy,” explained Dr. Holter Chakrabarty.

January of 2021 ushered in a new Congress, and ASH Grassroots Network members wasted no time getting to know the incoming freshman class. ASH members conducted virtual meetings with newly elected legislators and sent more than a hundred letters to Capitol Hill introducing the new Congress to hematology. Dr. Holter Chakrabarty was one of the many ASH members who had a freshman lawmaker; she engaged with her new congresswoman, Rep. Stephanie Bice (R-OK-5) earlier in the year. “The arrival of these new members and their staff created a great opportunity to introduce ourselves and hematology and the ability to set us up as a resource. However, it's important to note that there is never a bad time to contact your senators or representative,” explained Dr. Holter Chakrabarty. “If you missed connecting when they were first elected, you can still introduce yourself. You want your congressperson to see you as an asset and reach out for support when needed.”

Hematology advocates who didn't have a freshman member were still able to take part in virtual meetings. Members of the ASH Committee on Government Affairs and the ASH Committee on Practice also met with members of Congress who served on the House and Senate Appropriations Committees in the spring to urge support for increased funding for the NIH as well as the Centers for Disease Control and Prevention's Sickle Cell Data Collection program. “Meeting with appropriators early in the budget process allowed ASH to explain the importance of these programs before work had begun on the bills,” said Dr. Holter Chakrabarty. “And this strategy paid off with the House proposing a significant increase in funding for NIH and $7 million for the Sickle Cell Data Collection program — more than three times the funding the program received last year,” she added. As this issue of The Hematologist went to press, Congress had yet to finalize fiscal year 2022 appropriation levels. ASH created and hosted a series of educational webinars for hematologists to learn more about advocacy. “Once again, we see an example of the pandemic forcing us to innovate; however, we found out that the new virtual format made it easier for ASH members across the country to participate without having to travel or take time away from the lab or seeing patients,” shared Dr. Holter Chakrabarty. She was excited about how the webinar series turned out, adding, “the series covered an array of topics, was informative, and showed how easy it is to be an advocate.” Recordings of the entire ASH advocacy webinar series are available to view on demand at www.hematology.org/Advocacy.

2021 also saw the culmination of years of hard work by members of the ASH Palliative Care Working Group with the introduction of The Improving Access to Transfusion Care for Hospice Patients Act of 2021 (S. 2566) in the U.S. Senate. This bipartisan bill, introduced in July by Sen. Jacky Rosen (D-NV) and several of her colleagues in the Senate, seeks to increase access to palliative blood transfusions for patients receiving end-of-life care through the Medicare hospice benefit by establishing a demonstration program to provide a separate payment for blood transfusions outside of the daily reimbursement rate for hospice care services. Members of the working group met virtually with Senate offices this fall to seek new cosponsors for the bill and ASH Grassroots Network members helped reinforce the message by sending 275 letters to Capitol Hill. “The introduction of this bill truly shows what an impact ASH members can have on policy,” said Dr. Holter Chakrabarty. “This issue was first brought to ASH's attention by individual members, which then prompted the formation of a working group to address the problem. The introduction of this legislation is a direct result of ASH members raising the issue with Senate offices, and Sen. Rosen's staff working with ASH members and staff to try to provide the best possible end-of-life care for patients,” explained Dr. Holter Chakrabarty. Overall, ASH members conducted a total of 64 virtual visits with congressional offices and sent nearly 1,000 letters to policy makers advocating for the Society's policy priorities. “Every ASH member should feel very proud of the accomplishments and work that their fellow hematologists have done over the past year,” said Dr. Holter Chakrabarty. “This hard work has made a difference.”

There are also many other ways you can support ASH's advocacy efforts and further expand the Society's message on Capitol Hill. ASH staff can help schedule virtual meetings with your elected officials; you can also reach out to your representatives’ offices by sending an email or a tweet to let them know how you feel on a particular issue. To learn more about ASH advocacy and the Grassroots Network, visit the ASH Advocacy Center (www.hematology.org/Advocacy). Members of the ASH Grassroots Network receive action alerts and access to the monthly Advocacy Update with news and information on events happening in Washington that affect hematology. “It doesn't matter how you reach out to your legislators…” Dr. Holter Chakrabarty stated, “as long as you find a way for them to hear from you. You are the best advocate out there for your patients or research!”