‘You can’t use this to discriminate against us, nor will you use it to deny us healthcare’ – exclusion of carriers of sickle cell disease from healthcare who experience symptoms
Anna Cronin-Chavez (London School of Hygiene and Tropical Medicine, UK), Maria Berghs (De Montfort University, UK), Bassey Ebenso (Leeds University, UK) & Bola Ola (Lagos State University, Nigeria)
Panel: Biosocialities, patient organizations, and activism in the area of rare diseases
Abstract: 300 million people, or 1 in 20 people globally, are carriers of sickle cell disease. The majority live in sub-Saharan Africa as well as the Middle East, India, North and Latin America and Europe. Despite over 40 possible clinical complications of sickle cell trait (SCT) having been identified, people with SCT who present with symptoms are regularly turned away from health care, being told SCT is a benign condition. Conversely there is evidence SCT been used by public bodies to exclude teenagers from sports scholarships in the U.S.A. It is also claimed SCT has been used as a cause of death in attempts to cover up for 47 African-American deaths in US police custody, including the case of George Floyd. Ignoring healthcare needs for SCT complications may impact negatively on human rights and UN Sustainable Development Goals and has led the SCT community to despair with the lack of resolution of their symptoms, some believing the situation is due to structural racism in biomedical services. This paper looks at the efforts and views of members of the SCT community across the world to ‘change the narrative’ through the use of different social media platforms, to ensure people with SCT complications, rare or not, can access timely healthcare if and when needed.