Bringing Sickle Cell Disease to Life

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/ali
• ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiative
• ASH Research Collaborative - https://www.ashresearchcollaborative.org/s/
• ASH Minority Recruitment Initiative - https://www.hematology.org/awards/minority-recruitment

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

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=en
• Global 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-africa
• ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiative
• ASH Research Collaborative - https://www.ashresearchcollaborative.org/s/
• ASH Minority Recruitment Initiative - https://www.hematology.org/awards/minority-recruitment

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

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-initiative
• ASH 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-for
• American 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-recruitment
• International Association of Sickle Cell Nurses and Professional Associates - https://www.iascnapa.org/#:~:text=Our%20association's%20mission%20is%20to,cell%20disease%20through%20advocacy%2C%20standardized

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

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-initiative
• ASH 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-for
• American 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-recruitment

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

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-initiative
• ASH 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-trait
• ASH Minority Recruitment Initiative - https://www.hematology.org/awards/minority-recruitment

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

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-initiative
• 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-pain
• Managing 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.html
• Sickle 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/Recommendations

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

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-initiative
• ASH Research Collaborative - https://www.ashresearchcollaborative.org/s/
• ASH Anti-Racism Toolkit - https://www.hematology.org/diversity-equity-and-inclusion/anti-racism-toolkit

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

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-pain
• ASH pain management resources: https://www.hematology.org/advocacy/sickle-cell-disease-initiative/pain-management-resources
• Crescent 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-disease
• Article: 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/dyinginthecity
• Book: The Troubled Dream of Genetic Medicine by Keith Wailoo - http://www.keithwailoo.com/troubleddream

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

In the final episode of Season 1, Dr. Courtney Fitzhugh encourages medical students interested in sickle cell disease to get involved and reach out to a mentor. She shares her journey to becoming a physician scientist with a lab at the National Institutes of Health where groundbreaking research is translated into patient care. Learn about joining ASH, find resources for trainees and medical students at www.hematology.org/awards and find relevant opportunities with E. E. Just at http://eejusthematology.org/.
Find additional information about ASH's Sickle Cell Disease Initiative by visiting https://www.hematology.org/advocacy/sickle-cell-disease-initiative. Learn about ASH's Minority Recruitment Initiative at https://www.hematology.org/awards/minority-recruitment. 
Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/

In this episode, Dr. Betty Pace explains her path to conducting research in sickle cell disease. As a clinician and researcher, she shares how she was able to bring the clinical perspective to the lab. Learn some important techniques to secure an independent investigator status and overcome challenges including concerns about financial security.
Learn more about ASH sickle cell disease research priorities by visiting https://www.hematology.org/research/sickle-cell-disease-and-sickle-cell-trait/other-sickle-cell-priorities.
Principal investigators holding specific NIH grants can apply for diversity supplements to support high school, undergraduate, graduate/clinical students, post-doctorates (including health professionals), and eligible investigators that are underrepresented in the biomedical sciences. Find more at https://grants.nih.gov/grants/guide/pa-files/PA-21-071.html. Learn about PRIDE (programs to increase diversity among individuals engaged in health-related research) via https://www.nhlbi.nih.gov/grants-and-training/training-and-career-development/diversity/pride.
Access information about the ASH Research Collaborative via https://www.ashresearchcollaborative.org/s/.
Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/