ASH Officers Meet With Health and Human Services Leaders

On Thursday, July 12, ASH leadership met with two senior leaders at the U.S. Department of Health and Human Services (HHS) — the Assistant Secretary for Health, Admiral (ADM) Brett P. Giroir, MD, and the U.S. Surgeon General, Vice Admiral (VADM) Jerome M. Adams, MD, MPH, to discuss ASH’s efforts to address the burden of sickle cell disease (SCD) in the United States and globally. ASH has been making significant progress in the area of SCD since launching the SCD Call to Action in 2016, and this meeting marks the first time ASH leaders have discussed this work with the Assistant Secretary for Health and other federal public health leaders.

During the meeting, ASH President Dr. Alexis Thompson, ASH President-Elect Dr. Roy Silverstein, ASH Vice President Dr. Stephanie Lee, and ASH Treasurer Dr. Susan Shurin, identified areas where the Society and the Assistant Secretary’s office can collaborate on efforts to improve the lives of people living with SCD. Following this gathering, The Hematologist and Dr. Silverstein discussed meeting outcomes and what to expect in the future.

“The meeting revealed that the Assistant Secretary has placed SCD as one of his top priorities,” said Dr. Silverstein. “We learned that his priorities are exactly aligned with ASH’s SCD priorities and that our investments and efforts in an SCD registry, clinical trials network, guidelines, education and training, coalition, and congressional advocacy align with his goals and have his full support. This is a tremendous statement of validation for our efforts and investments and should make ASH members proud and excited to move forward.” One major topic of potential collaboration between HHS and ASH is the Society’s newly created Sickle Cell Disease Clinical Trials Network (CTN). The goal of the CTN is to use ASH’s convening power to create a network of collaborating clinical research sites for the development and testing of interventional therapeutics and devices. Additionally, the CTN will improve accrual and reduce costs by directing trial sponsors to active SCD research sites with adequate patient populations and leverage the ASH Registry for patient cohort identification.

In addition to the CTN, the Assistant Secretary also showed support for a National Academy of Medicine study of access-to-care–related issues for people living with SCD. This type of report is ripe for collaboration with ASH as it would help federal and nongovernment entities identify gaps in SCD care and justify the need for innovative models of care for this patient population.

ASH leaders also discussed how ASH can help support HHS’s national efforts on the opioid crisis. Dr. Silverstein was encouraged that Assistant Secretary Giroir shared ASH’s view that although opioids pose important public health risks, they remain an important tool for managing acute and chronic pain in patients with SCD and cancer. “His willingness to partner with ASH on getting this message out is very important,” said Dr. Silverstein, who felt that the meeting was constructive and that the positive relationships built with senior HHS leaders would yield long-term benefits. “The willingness of the Assistant Secretary to seek input from ASH on hematology-related issues and to partner with the Society to help achieve his goals represents a long-term opportunity for ASH to have a seat at the table when important decisions are made at HHS that affect hematologists and patients with blood diseases,” he said.

As a follow-up to the meeting, ASH Secretary Dr. Robert Brodsky represented the Society at a late-July HHS “Sickle Cell Disease Engagement Roundtable,” a listening session for patient organizations on SCD-related challenges and opportunities. Additionally, ASH staff has meetings scheduled with ADM Giroir’s staff to continue the discussion about specific ways to work together to help strengthen and expand federal programs focused on SCD research, training, and health care delivery. ASH will keep ADM Giroir and his office apprised as the Society advances the various components of its SCD initiative. ASH will also continue to offer the expertise of the hematology community as a resource to help advance ADM Giroir’s SCD priorities.

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