ARTICLE: Life after sickle cell disease, is it really uhuru?
AUTHORS: Lydia H Pecker, Adeseye M Akinsete, C Patrick Carroll, Sophie Lanzkron, Kevin H M Kuo, Monica Hulbert, Elizabeth Stenger, Deepika S Darbari
JOURNAL: Lancet Haematol. 2023 Dec;10(12):e946-e949. doi: 10.1016/S2352-3026(23)00306-X.
Sickle cell disease affects millions of individuals worldwide, causing relentless end-organ injury, episodic emergencies, and early mortality. Deficiencies in sickle cell disease diagnosis, clinical care, treatment, and research are well recognised global health disparities. 1 We are entering a long-awaited era when practical, curative therapies for sickle cell disease are on the horizon. Yet opportunities to use potentially curative therapy through haematopoietic cell therapies, including haematopoietic stem-cell transplantation (HSCT) and gene therapy, introduce new risks and uncertainty. In Swahili, uhuru means freedom, and especially signifies freedom from forces of oppression. Even when successful, haematopoietic cell therapies do not entirely liberate those treated from the many consequences of sickle cell disease itself or from the consequences of decades of poorly resourced care systems. 2 Likewise, the existence of curative therapy does not liberate health-care workers, health-care systems, and non-governmental and federal agencies from their responsibilities, no matter the curative therapy outcome. We have a duty to build care systems for people exposed to therapies intended to cure sickle cell disease.
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Side Effects Public Media: Sickle cell experts say a cure without care jeopardizes the freedom promised by new gene therapies