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The ASH Guide to Advocacy: How to Make an Impact in Hematology

February 2, 2024

February 2024

One of the American Society of Hematology’s (ASH) key roles is to represent the interests of scientists and clinicians working in the field of hematology on Capitol Hill and within federal agencies. As Jennifer Holter-Chakrabarty, MD, chair of ASH’s Committee on Government Affairs, shared during the Grassroots Network Lunch at the 65th ASH Annual Meeting and Exposition, in 2023 alone, ASH and its volunteer advocates sent more than 1,700 messages to Capitol Hill, held 150 virtual and in-person meetings with congressional offices, contributed to bipartisan congressional support for the National Institutes of Health (NIH) budget, and created two programs tasked with collecting data on sickle cell disease (SCD) to help improve outcomes for those living with the disease.

Dr. Holter-Chakrabarty underscored the significance of these efforts, saying, “[Advocacy] is so important in everything we do. It’s so important that all of us recognize this is a piece of our lives that is going to enable our field to move forward. This is a piece of our lives that is going to help our patients.”

This year, ASH continues to prioritize research funding for the NIH and advocacy efforts toward legislation that ensures access to comprehensive care for individuals with SCD, in addition to working to stop Medicare pay cuts for physicians and improving transfusion care access for patients in hospice.

ASH believes that everyone can be an advocate for the study and treatment of blood-related diseases and encourages all, including trainees, patients, and clinicians, to consider getting involved. Read on to learn more about the advocacy resources ASH offers and how you can get started in making an impact in advancing the understanding of blood diseases and improving the lives of those affected by them.

ASH Grassroots Network

Although ASH works diligently to represent members’ interests, policymakers want to hear directly from constituents, too. ASH members who participate in the Grassroots Network receive regular updates about current advocacy efforts affecting hematology, periodic action alerts, monthly updates via ASH’s Advocacy Update, and information about how to contact their members of Congress.

Advocacy Toolkit

The Advocacy Toolkit includes a set of practical tools participants can use and a list of actions that participants and nonparticipants in the ASH Grassroots Network can take to communicate with elected officials, including:

  • Advocacy 101 Webinar: This webinar provides valuable insight for members who want to learn how to get involved in ASH’s advocacy efforts but don’t know where to start. Through this resource, members can learn about the importance of advocating on behalf of hematology and the ASH resources available to be an effective, successful advocate.
  • Contacting Congress: Although House and Senate offices may receive thousands of messages on a particular topic, each one has the potential to make a difference, especially if a member of Congress is undecided. Email remains one of the most effective ways to contact your members of Congress and can be done easily through the ASH Advocacy Center (org/TakeAction) by clicking one of the current policy campaigns and entering your contact information to send a pre-populated email to your elected officials. Social media is another powerful tool for contacting members of Congress and can also be facilitated through the ASH Advocacy Center. Finally, calling legislators is a great way to contact your representatives and let them know how you feel.
  • Meetings, video, and editorials: A face-to-face meeting with your members of Congress or their staff is often the best way to voice your thoughts and concerns. If you’re interested in scheduling a meeting with your elected officials, let staff in the ASH Government Relations and Practice Department know when you are in Washington, D.C., and available to meet with your congressional delegation, either virtually or in person. The ASH staff will work with you to schedule the meeting, prepare relevant talking points and fact sheets, and assist with any necessary follow-up. ASH also provides key resources and step-by-step guidance for anyone interested in participating in congressional town hall meetings during congressional recesses and for those who want to write an article for their local newspaper.
  • Policy-specific tools: ASH has created fact sheets, infographics, and talking points to provide important background information for lawmakers on certain key hematology topics, including SCD, maternal health care, and palliative blood transfusions. The infographics serve as a useful tool to guide conversations between advocates and legislators by using accessible, easy-to-understand images and statistics. The talking points can be used in congressional meetings or for crafting letters, sending emails, and making phone calls.

ASH Congressional Fellowship

This fellowship offers a unique opportunity for a hematologist to work in a congressional office on Capitol Hill for an academic year to help shape health care and hematology policy. The fellow will have the opportunity to learn about the policymaking process and educate members of Congress and their staff about hematology. Annual applications are typically due in January.

Carrier Advisory Committee

Each state must have at least one Carrier Advisory Committee (CAC), which are private health insurers contracted to process Medicare claims for a specific geographic region. CACs allow physicians to be aware of and participate in the development of new Local Coverage Determinations to discuss and amend administrative policies and serve as a link between Medicare and the local provider community. ASH members can serve as subject matter experts or CAC representatives for their state. Additionally, ASH sponsors the annual CAC Network Meeting in Washington, D.C., as an opportunity for CAC representatives to network, discuss Medicare-related coverage and policy issues, draft policies, and more.

ASH Advocacy Leadership Institute

This two-day workshop provides an opportunity for ASH members to learn about advocacy, health policy, the legislative process, and ASH’s advocacy activities. On the first day, participants attend training on the policy-making process and effective advocacy before meeting with the staffs of their representatives and senators on the second day. Nominations will start in early 2024 and are open to all ASH members with U.S. citizenship, including trainees.

For many, getting started in advocacy work may seem intimidating or overwhelming, particularly given ASH’s many avenues for engagement. However, at the recent Grassroots Network Lunch, Dr. Holter-Chakrabarty highlighted one simple step that each person can take to help make a difference — contacting Congress through the ASH Advocacy Center — and stressed the importance of encouraging others to also take this step. “If we all advocate in one clearer voice,” she said, “we are massive.”

For additional information on these resources and more, visit hematology.org/advocacy.

 

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