TITLE:
Public Opinion on Exagamglogene Autotemcel (Casvegy) for Sickle Cell Disease: A Qualitative Thematic Analysis Using Social Media Data in Cameroon
AUTHORS:
Eposse Ekoube Charlotte, Mandeng Ma Linwa Edgar, Mbono Ritha Betoko, Hassanatou Iyawa, Michael Budzi Ngenge, Kedy Mangamba Koum Danielle Christiane
KEYWORDS:
Sickle Cell Disease, Cameroon, Gene Therapy, Social Media, Thematic Analysis, Health Equity
JOURNAL NAME:
Open Journal of Blood Diseases,
Vol.15 No.4,
November
7,
2025
ABSTRACT: Background: On January 31, 2025, the UK’s National Health Service (NHS) approved exagamglogene autotemcel (Casgevy), a gene-editing therapy for severe sickle cell disease (SCD), at a cost of £1.65 million (approximately 1.287 billion CFA francs) per patient. Given SCD’s high prevalence in Cameroon, we aimed to explore public opinion in this context, identify common themes, and assess implications for healthcare equity. Methods: We conducted a qualitative thematic analysis of 712 comments from a single, highly engaged Facebook post identified using the search string “sickle cell Cameroon cure”. Comments, primarily in Pidgin English, were systematically translated into English by bilingual researchers (EEC and MBR) and coded using NVivo 14 to derive themes and sentiments. Manual cross-checking ensured coding consistency and reduced linguistic bias. The study adhered to the 32-item COREQ checklist. Results: Seven themes emerged: enthusiasm and appreciation, scepticism about cost, accessibility issues, advocating for genotype testing, scepticism about practical use, hopes for subsidies, and personal stories. Sentiment shifted from optimism to frustration due to the treatment’s cost, with many emphasising prevention through genotype testing over an unaffordable cure. While the approval of Casgevy elicits hope, its cost renders it inaccessible for most Cameroonians, exacerbating health inequities. Conclusion: The cure elicits optimism but is overshadowed by its cost, exacerbating inequities and emphasizing prevention. Subsidized testing and treatment are critical to meeting community needs. This study highlights social media as a lens for public health insights, especially in low-resource settings like Cameroon.