The COVID-19 pandemic has upended all facets of life, including both hematology research and clinical practice. ASH has been working to ensure that the concerns of hematologists and their patients are considered by federal policy makers in COVID-19 relief legislation. To better understand the impact of the COVID-19 crisis, and Washington’s response to it, The Hematologist spoke with three ASH members: Dr. Julie Kanter (member, ASH Committee on Government Affairs and the Sickle Cell Disease [SCD] Work Group on Health Care Professional Education and Training), Dr. Chancellor Donald (Chair, ASH Committee on Practice), and Dr. Ross Levine (Chair, ASH Committee on Scientific Affairs).

Research on pause. Dr. Levine, a physician scientist at Memorial Sloan Kettering Cancer Center, recently convened leaders to discuss the impacts of research projects that have been halted because of required physical distancing measures. While acknowledging the necessity of such measures, Dr. Levine remains concerned about long-term consequences. “The ‘pause’ in laboratory research is a well-considered, appropriate step but has innumerable consequences on the pace of scientific discovery, the progress of specific scientific projects, and the careers of all investigators including trainees and junior faculty,” he said.

ASH has been working to inform Congress of the effects of closing research labs. In April, members of the ASH Grassroots Network sent hundreds of letters to Capitol Hill urging legislators to join bipartisan “Dear Colleague” letters authored by Reps. Diana DeGette (D-CO) and Fred Upton (R-MI), and Sens. Thom Tillis (R-NC) and Ed Markey (D-MA). These letters ultimately included signatures from more than 175 members of the House and more than 30 members of the Senate from both parties urging congressional leaders to include $26 billion in supplemental funding for federal research agencies in any future COVID-19 supplemental relief package. These emergency supplemental resources would allow federal research agencies, including the National Institutes of Health (NIH), to mitigate COVID-19-related disruptions and restore momentum across the full range of the nation’s research enterprise as quickly as possible once the crisis subsides.

The Society has developed a COVID-19 Research Agenda in Hematology in response to the hematology-related complications that have emerged in many patients. This document explores the key underlying research questions that, to date, lack scientific evidence to inform clinical practice and treatment efforts and which are of top priority for patients. ASH leaders have been sharing the new research agenda with numerous institutes and centers at NIH. ASH President Dr. Stephanie Lee participated in a virtual meeting with National Heart, Lung, and Blood Institute (NHLBI) Director Dr. Gary Gibbons and leaders from other heart, lung, and blood organizations, where she shared highlights from ASH’s new COVID-19 Research Agenda, as well as information on the ASH Research Collaborative Data Hub’s COVID-19 Registry for Hematology.

Navigating an altered health care system. ASH, working with Committee on Practice Chair Dr. Donald, has been disseminating updates on the numerous regulatory changes issued by the Centers for Medicare and Medicaid Services (CMS) during the crisis. These changes aim to help hospitals address issues with capacity, to provide flexibility in how physicians see patients and supervise trainees, and to expand the limits of where physicians can treat patients. “The Committee on Practice has worked to engage CMS regarding reimbursement issues for telehealth,” Dr. Donald said. Not only did Committee members lobby U.S. Senators for reimbursements, but a webinar was conducted with panelists well versed on the delivery of care for patients with hematologic disorders via telemedicine. ASH was pleased when CMS established new reimbursement rates for telephone-only evaluation and management (E/M) services to align with the comparable office/outpatient E/M codes.

“Our patients need us now more than ever.” As with other hematology patients, telemedicine has changed the way individuals living with SCD receive care. “We have switched 90 percent of ‘well’ visits to telemedicine and that has been very successful.” said Dr. Kanter, a professor of hematology and director of the Adult Sickle Cell Program at the University of Alabama in Birmingham. “We have also tried to call patients getting chronic treatments to ensure they know it is safe to come in and important to continue their transfusions, apheresis, infusions, etc. to ensure they remain healthy.”

ASH is working with members of Congress to authorize a Medicaid demonstration program to improve preventive and primary outpatient care for individuals living with SCD so that the unique medical needs of SCD patients, including those patients dealing with COVID-19, are taken into consideration. Recent data show that individuals with SCD are at higher risk for severe illness from COVID-19 due to a suppressed immune system and comorbid conditions of the heart, lungs, and other major organs. In April, ASH Grassroots Network members urged their federal representatives to join Rep. Danny Davis’ (D-IL) “Dear Colleague” letter to congressional leadership to support an amendment to the next COVID-19 relief package that would create a demonstration project at CMS to improve access to comprehensive outpatient care for individuals with SCD. The effort ultimately generated nearly 500 letters from ASH members to Capitol Hill and led to 35 of Representative Davis’ colleagues joining him in sending the letter to congressional leaders. ASH also led the creation of a letter from nearly 70 organizations in support of the effort.

Hematology patients also face acute challenges including limitations to receiving blood donations due to the pandemic. ASH worked with the U.S. Food and Drug Administration (FDA) and other partners to address the significant challenges of maintaining the national blood supply during the pandemic and to raise awareness to the shortage. Specifically, in March, ASH Grassroots Network members contacted their elected officials about the urgent need for safe, organized, and ongoing blood donations during this time of crisis. ASH has also supported the FDA’s updated guidance to expand blood donor eligibility to address the pressing need for blood donations during the pandemic.

For information on opportunities to advocate on behalf of hematology, visit the ASH Advocacy Center.