The Biden-Harris Administration continues to build on progress made tackling sickle cell disease (SCD), recently holding a virtual panel to discuss SCD treatment, policy milestones, and future goals. The panel, hosted in observance of National Minority Health Month, by the Office of the Assistant Secretary for Health of the U.S. Department of Health and Human Services (HHS), also highlighted SCD leaders who fostered advances in SCD treatment and delivery of care, their achievements, and new policy priorities and objectives.

During his opening remarks for the event, HHS Secretary Xavier Becerra highlighted the importance of the Department’s work to address SCD. “Across HHS, we are working to advance health care quality and outcomes for SCD patients of all ages, by funding research, sharing data, and helping community-based organizations provide services and support. Too many people with the disease currently can’t access quality treatment or afford groundbreaking cell and gene therapies, on top of the historical discrimination they’ve faced trying to access necessary health care.”

Secretary Becerra also discussed how the Biden-Harris Administration is taking action to improving health care outcomes and quality of life for all SCD patients and their families across their lifespans. Those actions include:

• This past December, the FDA approved two gene therapies that have shown promise in preventing organ damage, improving overall health, and boosting quality of life for people living with sickle cell disease.
• In January of 2024, the Biden-Harris Administration announced that SCD will be the first focus of the Cell and Gene Therapy Access Model, which was initially announced in February 2023. The model is designed to improve health outcomes, increase access to cell and gene therapies, and lower health care costs.
• The Centers for Medicare & Medicaid Services released a Sickle Cell Disease Action Plan, which outlines activities across the agency to advance care for SCD, including new efforts to improve the quality of care for individuals with SCD and to help patients afford potentially life-saving treatments.
• The National Heart, Lung, and Blood Institute (NHLBI), an Institute of the National Institutes of Health (NIH) provides resources to help patients manage their symptoms and learn about clinical trials.
• The Health Resources and Services Administration (HRSA) continues to support programs that span across the sickle cell disease system of care, including newborn screening, diagnosis, access to treatments, early intervention, and successful transition into adult care. Collectively, HRSA’s sickle cell disease programs have a national reach, with $15.2 million invested in fiscal year 2023 in 91 sites and grantees throughout the country.

To view the full panel discussion, click here.

The following representatives participated in the panel:

• HHS Secretary Xavier Becerra
• Admiral Rachel Levine, MD – Assistant Secretary for Health, HHS
• Congressman Danny K. Davis (IL-07)
• Julie Panepinto, MD, MSPH, Director, Division of Blood Diseases and Resources, National Heart, Lung, and Blood Institute (NHLBI), NIH
• Clarice Reid, MD (Bethesda, MD)—Director of the National Sickle Cell Disease Program (1975-1994) and Division of Blood Diseases and Resources (1994-1998), NHLBI, NIH
• Cage Johnson, MD (Los Angeles, CA)—Professor Emeritus of Medicine, Keck School of Medicine of USC
• James Eckman, MD (Atlanta, GA)—Emeritus Professor of Hematology and Medical Oncology, Emory University School of Medicine;
• Donnell Ivy, MD, MPH (Georgetown, Ontario, Canada)—Health Education Coordinator, Association for Black Cardiologists, Inc.; Vice Chief Medical Officer, Sickle Cell Disease Association of America; Individual living with SCD
• Jennifer Fields, MPH (Holly Springs, NC)—Founder/President, The Hills Tandem; Implementation Strategy Consultant, Sickle Cell Disease Foundation; Individual living with SCD