Bringing Sickle Cell Disease to Life

American Society of Hematology
  • 5.0 (10)
  • SCIENCE
  • UPDATED WEEKLY

This podcast, hosted by Dr. Wally Smith of Virginia Commonwealth University, features interviews of diverse leading experts including researchers, physicians, and individuals living with the disease, exploring the history of the disease, the global impact and need for additional providers, disparity and bias in sickle cell disease, and promising news regarding the management and treatment of sickle cell disease. Learn about the past, present and future of sickle cell, and join us in the fight for sickle cell disease survival!

  1. 08/12/2022

    Follow Your Heart

    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. Sickle cell disease (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 SCD, including Drs. James Eckman, JJ Strouse, Michael DeBaun, and Solomon Ofori-Acquah. Learn more by reading through the resources in the list below. ASH Advocacy Leadership Institute - https://www.hematology.org/advocacy/aliASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiativeASH Research Collaborative - https://www.ashresearchcollaborative.org/s/ASH Minority Recruitment Initiative - https://www.hematology.org/awards/minority-recruitmentMusic: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

    23 min

  2. 08/08/2022

    Connections Across the Globe

    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. Learn more by reading through the resources in the list below. Caribbean Network of Researchers on Sickle Cell Disease and Thalassemias (CAREST) - https://carest-network.org/?lang=enGlobal Sickle Cell Disease Network (GSCDN) - https://www.globalsicklecelldisease.org/ASH Consortium on Newborn Screening in Africa (CONSA) - https://www.hematology.org/global-initiatives/consortium-on-newborn-screening-in-africaASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiativeASH Research Collaborative - https://www.ashresearchcollaborative.org/s/ASH Minority Recruitment Initiative - https://www.hematology.org/awards/minority-recruitmentMusic: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

    24 min

  3. 07/29/2022

    Everyone Has a Place

    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. Learn more by reading through the resources in the list below. ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiativeASH Research Collaborative - https://www.ashresearchcollaborative.org/s/ASH SCD guidelines for management of acute and chronic pain - https://ashpublications.org/bloodadvances/article/4/12/2656/460974/American-Society-of-Hematology-2020-guidelines-forAmerican College of Emergency Physicians managing sickle cell disease in the ED point-of-care tool - https://www.acep.org/sickle-cell/ASH Minority Recruitment Initiative - https://www.hematology.org/awards/minority-recruitmentInternational Association of Sickle Cell Nurses and Professional Associates - https://www.iascnapa.org/#:~:text=Our%20association's%20mission%20is%20to,cell%20disease%20through%20advocacy%2C%20standardizedMusic: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

    15 min

  4. 07/22/2022

    Home Is Where the Care Is

    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. Learn more by reading through the resources in the list below. ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiativeASH Research Collaborative - https://www.ashresearchcollaborative.org/s/ASH SCD guidelines for management of acute and chronic pain - https://ashpublications.org/bloodadvances/article/4/12/2656/460974/American-Society-of-Hematology-2020-guidelines-forAmerican College of Emergency Physicians managing sickle cell disease in the ED point-of-care tool - https://www.acep.org/sickle-cell/ASH Minority Recruitment Initiative - https://www.hematology.org/awards/minority-recruitmentMusic: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

    21 min

  5. 06/10/2022

    Fighting Racism From the Lab Bench to the Patient Bedside in Sickle Cell Research

    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. Learn more by reading through the resources in the list below.  ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiativeASH Research Collaborative - https://www.ashresearchcollaborative.org/s/ASH priorities for sickle cell disease and sickle cell trait - https://www.hematology.org/research/sickle-cell-disease-and-sickle-cell-traitASH Minority Recruitment Initiative - https://www.hematology.org/awards/minority-recruitmentMusic: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

    18 min

  6. 06/03/2022

    Improving Emergency Care: The Painful Truth

    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. Learn more by reading through the resources in the list below.  ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiativeASH SCD Guidelines for Management of Acute and Chronic Pain - https://www.hematology.org/education/clinicians/guidelines-and-quality-care/clinical-practice-guidelines/scd-guidelines-management-of-acute-and-chronic-painManaging Sickle Cell Disease in the ED Point-of-Care Tool - https://www.acep.org/sickle-cell/ASH Research Collaborative - https://www.ashresearchcollaborative.org/s/Centers for Disease Control and Prevention Sickle Cell Data Collection Program - https://www.cdc.gov/ncbddd/hemoglobinopathies/scdc.htmlSickle Cell Disease Association of America Patient Powered Registry - https://www.sicklecelldisease.org/sickle-cell-health-and-disease/getconnected/National Institute for Health and Care Excellence: Sickle Cell Disease: Managing Acute Painful Episodes in Hospital (UK Guidance) - https://www.nice.org.uk/guidance/cg143/chapter/RecommendationsMusic: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

    17 min

  7. 05/27/2022

    Waiting for Mercy

    Structural racism and implicit bias are prominent in the care of people living with sickle cell disease (SCD). Dr. Marilyn Hughes Gaston shares how she unwittingly showed bias early in her career and learned from her mistake. Host Dr. Wally Smith talks to several people living with SCD who have experienced bias first-hand, including ASH Research Collaborative SCD Community Engagement Manager Shauna Whisenton, an individual cured of SCD, and Dr. Titilope Fasipe, an SCD warrior and physician. Pioneer in SCD care and research Dr. James Eckman and Dr. Sophie Lanzkron share strategies they are using in their clinics to combat structural racism and provide better care for their patients. Kyle Smith emphasizes that people battling SCD deserve compassionate care. Learn more by reading through the resources in the list below. Relevant resources:  ASH Sickle Cell Disease Initiative -  https://www.hematology.org/advocacy/sickle-cell-disease-initiativeASH Research Collaborative - https://www.ashresearchcollaborative.org/s/ASH Anti-Racism Toolkit - https://www.hematology.org/diversity-equity-and-inclusion/anti-racism-toolkitMusic: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

    23 min

  8. 05/20/2022

    Chwechweechwe: Relentless Perpetual Chewing

    Severe pain, which is the most common complication for people living with sickle cell disease (SCD), severely affects their quality of life. This episode starts with a passage about the excruciating pain a person living with SCD endures read by SCD care and research pioneer Dr. Marilyn Hughes Gaston. Host Dr. Wally Smith talks to Kyle Smith, an advocate and SCD warrior, about his many experiences with pain from the disease. Dr. Titilope Fasipe, an SCD provider and an individual living with the disease, discusses how sickle cell is defined in other countries and differences in perception and understanding of SCD in the United States. SCD experts and care providers Dr. Sophie Lanzkron and Dr. JJ Strouse share strategies and guidelines for managing pain crises in the emergency department. Understanding and applying objective guidelines will help clinicians recognize and avoid implicit bias. Learn more by reading through the resources in the list below. Relevant resources:  ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiative ASH Research Collaborative - https://www.ashresearchcollaborative.org/s/ASH SCD Guidelines for Management of Acute and Chronic Pain - https://www.hematology.org/education/clinicians/guidelines-and-quality-care/clinical-practice-guidelines/scd-guidelines-management-of-acute-and-chronic-painASH pain management resources: https://www.hematology.org/advocacy/sickle-cell-disease-initiative/pain-management-resourcesCrescent Foundation: A Sickle Cell Initiative - https://www.crescentfoundationscd.org/ NIH Workshop: Approaches to Effective Therapeutic Management of Pain for People With SCD - https://www.nccih.nih.gov/news/events/approaches-to-effective-therapeutic-management-of-pain-for-people-with-sickle-cell-diseaseArticle: Pain in Sickle Cell Disease. Rates and Risk Factors - https://pubmed.ncbi.nlm.nih.gov/1710777/Book: Dying in the City of the Blues by Keith Wailoo - http://www.keithwailoo.com/dyinginthecityBook: The Troubled Dream of Genetic Medicine by Keith Wailoo - http://www.keithwailoo.com/troubleddreamMusic: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

    30 min
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This podcast, hosted by Dr. Wally Smith of Virginia Commonwealth University, features interviews of diverse leading experts including researchers, physicians, and individuals living with the disease, exploring the history of the disease, the global impact and need for additional providers, disparity and bias in sickle cell disease, and promising news regarding the management and treatment of sickle cell disease. Learn about the past, present and future of sickle cell, and join us in the fight for sickle cell disease survival!

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