The study was conducted by three researchers: EEC (MD, MMED paediatrics, PGD sickle cell disease), EMML (MD, MRes Clinical research), and MBR (MD, MMED paediatrics). At the time of the study, EEC and MBR were faculty members at the Faculty of Medicine and Pharmaceutical Sciences, University of Douala, Cameroon, and specialized in paediatrics with a special interest in sickle cell diseases. EMML was a clinical research expert at the Faculty of Health Sciences, University of Buea, Cameroon. EEC and MBR are female, and EMML is male. Only EMML had formal training in qualitative research methods through graduate coursework and workshops, with over seven years of combined experience in public health and medical research.

No prior relationships were established with commenters, as data were collected from a public Facebook post. Commenters were unaware of the researchers’ involvement, as the study used anonymized, publicly available data. The researchers’ interest in SCD stemmed from its high prevalence in Cameroon and their professional commitment to addressing health inequities. Their familiarity with SCD’s socioeconomic impact in Cameroon may have influenced theme interpretation toward equity and access issues, which was acknowledged and discussed during analysis to minimize bias.

The study employed a constructivist paradigm, which seeks to comprehend the complexity of the world by exploring individuals’ perspectives and personal experiences, recognizing that public perceptions are shaped by social, economic, and cultural contexts [20] . Thematic analysis, following Braun and Clarke’s six-phase approach (familiarization, coding, theme generation, review, definition, and reporting), was used to identify patterns in sentiments expressed on social media [21] . This methodological orientation allowed for an inductive exploration of public opinion without preconceived hypotheses.

Participants were commenters on a single, highly engaged Facebook post identified on February 1, 2025, using the search string “sickle cell Cameroon cure”. Purposive sampling was employed to select this post based on its high engagement (712 comments, 1500 likes, 108 shares), ensuring a rich dataset reflecting diverse opinions. Commenters were approached indirectly through the public post, with no direct recruitment. The sample consisted of 712 comments, with no refusals or dropouts, as participation was voluntary and unsolicited. Commenters were primarily Cameroonian, inferred from their use of Pidgin English and references to local contexts, though specific demographic data (e.g., age, occupation) were unavailable due to the anonymous nature of the data.

Data were collected from a public Facebook post, an online setting accessible globally. No non-participants were present, as the data were text-based comments. The sample reflected Cameroon’s linguistic diversity, with most comments in Pidgin English, a widely used language in informal communication. The post’s prominence suggested engagement from a broad cross-section of Cameroonian social media users, including patients, caregivers, and healthcare advocates.

No interview guide was used, as the data consisted of unsolicited comments. The post was identified and comments extracted over one week (February 1 - 7, 2025). No audio or visual recordings were involved, as the data were text-based. Field notes were maintained to document coding decisions, researcher reflections, and contextual observations about the post’s tone and engagement. Data saturation was achieved after coding all 712 comments, with no new themes emerging. Transcripts were not returned to commenters for verification due to the anonymous, public nature of the data. Comments were imported into NVivo 14 for coding and analysis, ensuring systematic data management.

Three researchers (EEC, EMML, MBR) independently coded the comments inductively, generating initial codes (e.g., “cost concern”, “genotype advocacy”). Codes were organized into a coding tree, with sub-themes (e.g., emotional responses within enthusiasm) grouped into seven main themes through iterative discussions. Themes were derived entirely from the data, with no predefined categories. Discrepancies in coding were resolved through consensus meetings, ensuring inter-coder reliability. NVivo 14 facilitated data organization, theme visualization, and frequency analysis.

Sentiment scoring was performed manually by two independent coders (EEC and EMML) and cross-checked for consistency, with 95% inter-coder agreement. Sentiment analysis supplemented thematic findings, tracking shifts from hope to frustration. Participant checking was not feasible due to anonymity.

For this study, formal ethical approval was not sought based on the premise of minimal-risk research utilizing publicly available social media data. This was supported by two central claims: First, that the processing of personal data complied with the GDPR’s legitimate interests basis (Article 6 (1) (f)), following a mandatory balancing test that determined the research’s goals did not override the data subjects’ fundamental rights [22] . Secondly, all necessary steps were taken to ensure privacy. Specifically, the data were treated as pseudonymized to mitigate the risk of re-identification. To uphold participant welfare, the study adhered to strict ethical guidelines for social media research: all quotes used were anonymized with identifiers (e.g., “Participant A”) and either sufficiently paraphrased or intentionally short and generic enough to prevent them from being searchable and traced back to the original Facebook post, thereby protecting individual privacy and minimizing the potential for harm.

Participant quotations are presented to illustrate themes, with each quote identified by a participant code. The findings are consistent with the raw data, ensuring transparency. Major themes are clearly defined, with minor themes (e.g., emotional nuances within scepticism) discussed when relevant to provide a comprehensive understanding of public sentiment.

This theme captured excitement and gratitude for Casgevy’s approval. Commenters expressed joy and hope for a cure, often emphasizing the breakthrough’s significance. Sub-themes included celebration of the discovery and spiritual gratitude. Many praised the scientific advance (e.g., “Wow! That’s good news” [Participant A]; “This is the best news of the year. See me pouring tears of joy” [Participant B]). Others attributed the breakthrough to divine intervention (e.g., “God is great” [Participant C]; “To God be the glory” [Participant D]). Comments often conveyed emotional relief, with phrases like “Wooooooow” (Participant G) and “Amazing” (Participant H) appearing frequently, particularly in the first 20% of the comment thread.

This theme focused on disbelief and confusion about the treatment’s cost, emphasizing psychological shock at the figure. Sub-themes included psychological shock and requests for clarification. Commenters expressed shock at the 1.287 billion CFA francs price (e.g., “Fear amount” [Participant I]; “Na billion that I di see so or na my eye and brain get problem?” [Participant J]). Many requested the amount in words to confirm its magnitude (e.g., “One billion, two hundred and eighty-seven million, five hundred and two thousand, two hundred and nineteen francs” [Participant K]; “Abeg write the money in words” [Participant L]). Others used hyperbolic language to convey incredulity (e.g., “That money na phone number?” [Participant M]; “Only figure for the treatment dey like phone number” [Participant N]). This theme dominated the middle 50% of comments, with terms like “heeee” and “chaiiii” reflecting emotional intensity.

This theme highlighted concerns about the therapy’s inaccessibility due to its cost. Sub-themes included economic barriers and exclusion of the poor. Commenters noted the disconnect between the cure and Cameroon’s economic realities (e.g., “Good news but the poor will still die” [Participant O]; “How many families in Cameroon will be able to raise the sum requested?” [Participant P]). Many emphasized that only the wealthy could afford the treatment (e.g., “That money na for rich man only” [Participant Q]; “Only for the rich” [Participant R]). Others questioned affordability for average families (e.g., “How many average families can afford this amount?” [Participant S]; “That money no be for poor man” [Participant T]). This theme appeared consistently, often overlapping with cost scepticism, and underscored a sense of exclusion.

Commenters strongly advocated for genotype testing to prevent SCD. Sub-themes included calls for testing and personal anecdotes about testing. Many urged testing before relationships or marriage (e.g., “Go do your genotype test” [Participant U]; “Please I Join My Voice To Say ‘Go Check Out Yours’” [Participant V]). Personal stories highlighted the impact of testing (e.g., “Knowing my genotype made me feel so happy coz imagine I didn’t know and I planted my seed in another AS” [Participant U]; “Thank God we both are AA & AA. I was so excited” [Participant W]). Others referenced affordable testing options, like free campaigns in Kumba or tests for 8 - 11 k CFA (e.g., “In the month of March we will be campaigning against sickle cell and the test will be completely free” [Participant X]; “We do it here in our hospital in Bda for 11 k” [Participant Y]). This theme gained prominence in the final 30% of comments.

This theme reflected doubts about Casgevy’s practical relevance in Cameroon, emphasizing the perceived futility of an unaffordable treatment. Sub-themes included perceived irrelevance and the emotional impact of cost. Commenters viewed the cure as unattainable (e.g., “No cure if people can’t afford” [Participant Z]; “The simple truth is that there is no cure yet because just to read that figure can cure your sickle cell and add you enough high blood” [Participant AA]). Others suggested the cost negated the breakthrough’s value (e.g., “News good but money spoil news” [Participant BB]; “With the price, I think there is no difference when the medicine wasn’t discovered” [Participant CC]). Some expressed frustration that the price caused additional stress (e.g., “That money alone can kill the patient” [Participant DD]). This theme overlapped with accessibility concerns, emphasizing the cure’s impracticality.

Commenters expressed hope for external interventions to make Casgevy affordable. Sub-themes included calls for institutional support and future optimism. Many urged governments, NGOs, or the WHO to subsidize the treatment (e.g., “The WHO, gov’t, NGO should subsidise so that a common man can benefit from this discovery” [Participant EE]; “Please let the government look into this” [Participant FF]). Others hoped for future cost reductions, citing precedents like HIV drugs (e.g., “We pray that the WHO finds a way to reduce the cost of treatment” [Participant GG]; “Just like treatment for HIV/AIDS was costly but now it’s almost free” [Participant HH]). This theme reflected a desire for collective solutions, often appearing alongside accessibility concerns.

This theme captured personal experiences with SCD, adding emotional depth. Sub-themes included patient experiences and caregiver perspectives. Patients shared their struggles (e.g., “Yours truly… 59 year-old warrior” [Participant II]; “And some AS genes have sickle cell symptoms. Like me that money plenty ooh” [Participant JJ]). Caregivers described financial and emotional burdens (e.g., “I have friends that suffer from this type of disease and unfortunately 2 have already passed away” [Participant KK]; “She spends not less than 30 k monthly to get drugs for the boy out of her 65 k salary” [Participant LL]). These stories highlighted SCD’s toll, often reinforcing prevention advocacy. These themes and sub-themes are summarised in Table 1 and Table 2 and Figure 1 below.

Sentiment analysis showed a shift across the comment thread. The first 20% of comments were predominantly positive, with phrases like “Wow, great news” (Participant NN) and “Thank you Jesus” (Participant OO) reflecting excitement. The middle 50% shifted to frustration, driven by cost concerns (e.g., “That figure don spoil all the joy” [Participant PP]; “I was excited until I saw those figures, my mood changed” [Participant QQ]). The final 30% emphasized pragmatism, with 60% of comments focusing on prevention (e.g., “Better to avoid the sickness” [Participant RR]; “Check ya genotype abeg” [Participant SS]). This shift highlighted a progression from hope to disillusionment, culminating in actionable solutions.