Although the COVID-19 pandemic has prevented advocates from meeting with legislators in person, ASH’s advocacy work remains as important as ever. On September 14, ASH hosted an “Advocacy 101” webinar to inform ASH members about how to get involved in the Society’s advocacy efforts. Later that week, ASH’s Officers met with leaders at the Centers for Disease Control and Prevention (CDC) and the U.S. Food and Drug Administration to discuss hematology priorities of interest to each agency. Finally, during the week of September 21, more than 50 ASH members from across the country met with more than 60 congressional offices over a three-day period as part of ASH’s inaugural virtual Capitol Hill event to advocate for increased funding for the National Institutes of Health (NIH), permanent expansions to telehealth, and policy efforts to improve care for patients living with sickle cell disease (SCD).
The event took place at a very important time in Washington, DC, as Congress was continuing deliberations to establish final funding levels for federal agencies and programs for fiscal year (FY) 2021, giving ASH advocates a prime opportunity to remind lawmakers of the importance of NIH funding. In addition to the annual funding level for NIH, ASH advocates also urged lawmakers to support emergency supplemental funding for research that has been impacted by the COVID-19 pandemic.
ASH advocates also talked with lawmakers about the importance of telehealth and how it is changing the face of health care. The COVID-19 crisis highlighted the need for and importance of telehealth in enabling physicians to care for their patients. Telehealth services reduce the risk of contracting COVID-19 for patients, their caregivers, and providers; increase access to care; and lessen the need for travel to receive specialty care, especially for routine check-in visits (a key benefit for patients who live in locations that are distant from larger hospital centers). Advocates asked lawmakers to make the changes to Medicare and Medicaid telehealth services implemented during the public health emergency permanent, by eliminating originating site requirements, maintaining payment parity between telehealth and in-person visits, and ensuring permanent coverage of audio-only telehealth services.
Finally, ASH members continued advocating on behalf of individuals with SCD. Less than two weeks prior to the congressional meetings, the National Academies of Sciences, Engineering, and Medicine (NASEM) released a new report titled “Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action,” which provides a blueprint and eight overarching strategies for improving health care for Americans living with SCD. The timing of the report’s release allowed ASH members to raise awareness among lawmakers and their staffs.
One of the key recommendations in the report is also a longstanding ASH policy goal: the establishment of a national system to collect and link data to characterize the burden of disease, outcomes, and the needs of those with SCD across the patient’s life span. ASH-supported legislation that authorized the creation of an SCD data collection program at the CDC was passed and signed into law in 2018. ASH has focused much of its SCD-related advocacy efforts on funding this important program. Over the summer, an amendment was included in a House-passed appropriations bill to provide $2 million in dedicated funding for SCD data collection at the CDC. During their September meetings, ASH advocates highlighted the NASEM recommendation and the need for funding directed toward CDC’s efforts. However, as this issue of The Hematologist went to press, the Senate had yet to take up any spending bills, and it was unclear if the amendment would be included in a final funding package.
Get Involved. It is important for all ASH members to contact their legislators and remind them about the importance of hematology and the needs of hematology researchers, clinicians, and patients. All ASH members can participate in the Society’s advocacy efforts by joining the Grassroots Network to receive regular updates and information about how to contact their members of Congress. The recording of the “Advocacy 101” webinar can be found on the ASH website for those interested in learning more about ASH’s efforts. Additionally, staff in the ASH Government Relations and Practice Department are available to help set up virtual meetings with your legislator’s office and provide the information needed to be an effective advocate, including fact sheets and relevant talking points. For more information, visit www.hematology.org/advocacy.