Bringing Sickle Cell Disease to Life American Society of Hematology

The final episode of Bringing Sickle Cell Disease to Life explores the concepts of putting research into practice, implementation science, and advocacy. Dr. Wally Smith hears from sickle cell pioneer and researcher Dr. Marilyn Hughes Gaston about early research with hydroxyurea. SCD provider and warrior Dr. Titilope Fasipe talks about how she learned to be an advocate to influence public policy. The season closes with final encouraging words from clinicians and researchers in sickle cell disease, including Drs. James Eckman, JJ Strouse, Michael DeBaun, and Solomon Ofori-Acquah.

Sickle cell disease (SCD) affects people all over the world. In this episode, Dr. Wally Smith interviews Dr. Russell Ware, an SCD provider and researcher who assembled an international team of experts to participate in global clinical trials. International SCD researcher Dr. Solomon Ofori-Acquah shares the story of how he got into research and how he expanded his projects to include many African countries.

Not enough hematologists specialize in sickle cell disease (SCD) to reach all the people who need care. Host Dr. Wally Smith talks with Dr. JJ Strouse about outreach programs he has developed to reach individuals in rural communities. SCD expert care provider and researcher Dr. Michael DeBaun describes how he involves physicians from many other disciplines to treat people with SCD. Dr. James Eckman describes how he has implemented physician extenders to engage non-physicians in important care roles. Shauna Whisenton provides the perspective of someone living with SCD regarding how community health workers provide care. Dr. Sophie Lanzkron explains how a hub and spoke model supports providers and their teams so that all individuals can access high-quality care.

Researchers, patients, and providers discuss the importance of a quality “medical home” for people living with sickle cell disease (SCD). ASH Research Collaborative Community engagement Manager Shauna Whisenton, an SCD warrior, describes the benefits she experienced once she found a medical home. SCD experts share their experiences creating treatment centers. Dr. James Eckman explains how he gained support and funding to develop one of the first infusion clinics for individuals living with SCD. Drs. JJ Strouse and Dr. Sophie Lanzkron describe their experiences developing sickle cell disease centers like medical homes that can coordinate the complex care needed by people living with SCD.

Translational research discoveries have been critical in improving care for people living with sickle cell disease (SCD). In this episode, Dr. Courtney Fitzhugh shares her passion for translational research and how it can directly help individuals living with SCD. Kyle Smith describes how acute chest syndrome impacts his day-to-day activities. Dr. Solomon Ofori-Acquah, an SCD researcher who studies acute chest syndrome, explains to host Dr. Wally Smith how his work goes from the lab bench to the bedside of people living with the disease. Racial disparities are also present in the SCD research space, and a diverse workforce is necessary to eliminate current barriers to research based on discrimination.

Emergency departments (ED) are inevitable for people living with sickle cell disease (SCD). Many clinicians in the ED, however, misunderstand the disease and perceive patients as drug seekers. This episode explores how education can help shift attitudes and how proper data and support can improve clinics. Shauna Whisenton describes an experience that is common for people living with the disease when they visit the ED, and shares how the ASH Research Collaborative is committed to engaging the community in research and clinical trials. Despite her own negative experiences with ED doctors, Dr. Titilope Fasipe recognizes that there are physicians who actually care about individuals with the disease and want to do better Drs. James Eckman, JJ Strouse, and Sophie Lanzkron describe the changes they have made in their hospitals to provide better care to people living with SCD who visit the ED.