2018 ASH Advocacy Activities

In advocacy, there is strength in numbers, so ASH is continuing to increase its efforts to expand and enhance the Society’s reach. Funding for the National Institutes of Health (NIH), efforts to ensure patient access to drugs, and authorization and appropriations for sickle cell disease (SCD) data collection efforts were top priorities on ASH’s advocacy agenda in 2018. More than ever, ASH needs help from its members to educate Congress, federal officials, and the public, on these (and other) issues.

ASH Capitol Hill Days and Capitol Hill Briefings

One of the most visible ways for the Society to advocate for hematology issues is through in-person visits with Members of Congress and their staff in Washington, DC. ASH organized five “Hill Days” in 2018 that coincided with the Committee on Government Affairs (March) and Committee on Practice (April) business meetings, the ASH Advocacy Leadership Institute (September), and ASH Leadership meetings (February and September). In total, ASH members had over 120 meetings on Capitol Hill where they advocated for ASH’s policy priorities. In addition, ASH coordinated Congressional Briefings to provide information on specific hematology issues including SCD and Chimeric Antigen Receptor Therapy (CAR-T) and participated in a Public Health Fair to raise awareness on venous thromboembolism.

ASH Advocacy Leadership Institute (ALI). ASH remains committed to educating its members on how to become effective advocates for hematology research and practice. Expanding the Society’s base of advocates is crucial to having ASH’s message heard in Congress and the federal agencies. Since 2011, the ASH Advocacy Leadership Institute (ALI) has provided a forum for ASH members to learn about legislation and health policy affecting hematology research and practice. Many participants become “go-to” advocates for ASH, taking quick action when legislative alerts are sent out to members. Additionally, the program helps identify leaders for future service on ASH’s committees and programs.

The first day of the two-day institute focuses on the legislative process, health policy, and advocacy strategies, including the role of social media in advocacy. Speakers include ASH Government Relations and Practice staff, ASH members active in advocacy efforts, and individuals from advocacy organizations, congressional offices, and federal agencies. On the second day, participants travel to Capitol Hill to visit their Representatives and Senators to apply what was learned on the first day of the program. The eighth annual ASH Advocacy Leadership Institute was held on September 24-25, 2018. The 2018 agenda and participant list is available on the ASH website.

ASH Congressional Fellowship. In conjunction with the American Association for the Advancement of Science (AAAS), the Society is continuing the ASH Congressional Fellowship program. This program provides the opportunity for an ASH member to work in a congressional office on Capitol Hill for a year. The fellowship allows a hematologist to learn about the policy making process and help shape health care and hematology policy. The fellowship also provides an opportunity to educate congressional members and staff about hematology and to learn about Congress’ relationship to the hematology community. Catherine Zander, PhD, of the University of Alabama, Birmingham, is the 2017-2018 fellow and is currently working on the staff of the House Energy and Commerce Committee, which has responsibility for many issues related to public health and research, through the end of 2018.

ASH Advocacy Toolkit. This year ASH expanded the online advocacy toolkit to provide members with the information and guidance necessary to communicate with elected officials in support of hematology. The toolkit clearly and concisely explains how members can undertake a number of actions to support ASH’s advocacy efforts, including: emailing or calling their legislators; using social media to engage with elected officials; attending a town hall meeting; and working with ASH staff to schedule in-person meetings with elected officials in Washington, DC or in district offices.

ASH Advocacy Survey. ASH recently launched an updated survey of all U.S. members to learn about what advocacy topics matter most to the Society’s membership and the ways in which members would like to engage with their elected officials. If you have not yet taken the survey but would like the opportunity to help shape the future of ASH’s advocacy and policy efforts in Washington, please click here.