"I know that one day I will be cured": Perspectives on acceptability of curative therapies for sickle cell disease in Tanzania.

Authors

Daima Bukini, Kassim Kassim, Collins Kanza, Aisha Rifai, Rahma Chanzi, Augostino Amando, Elianna Amin, Jonathan Spector, Julie Makani

Published in

Public health genomics. Pages 1-21. Jul 07, 2026. Epub Jul 07, 2026.

Abstract

While curative treatments for sickle cell disease (SCD), including hematopoietic stem cell transplant and gene therapies are largely restricted to high-resource settings, recent advancements have raised hopes that they will eventually become more accessible to patients in Africa, where the disease is particularly prominent and contributes to substantial morbidity and mortality. Understanding the factors that influence acceptability of curative therapies will therefore be important in developing strategies for successful adoption and implementation. To address this need, a qualitative study was conducted to gain insights into the perspectives of patients and families in Tanzania regarding curative therapies for SCD, focusing on factors affecting treatment acceptability. A total of 81 individuals (46 caregivers and 35 patients) participated in Focus Group Discussions or In-Depth Interviews; the majority were female (67%) and between 21 and 40 years of age. The results indicated substantial interest in current and prospective curative programs, with various factors influencing the attitudes of patients and caregivers differently. The findings suggested that caregivers' decisions were likely to be influenced by the burden of caregiving roles and the financial costs related to care for SCD. Patients were more likely to accept the therapies if provided with information on safety of the therapies and transparency of data from treated patients. In preparation for GT trials or transplants, tailored engagement strategies for patients younger than 18 years old will be necessary as the majority of SCD patients in Africa are children. Healthcare professionals must be well-informed to address questions and concerns from patients' families. Overall, the study highlighted strong interest in curative therapies for SCD in Tanzania while identifying important factors shaping acceptability, underscoring the need for tailored engagement and early involvement of affected families in program planning.

PMID:
42412717
Bibliographic data and abstract were imported from PubMed on 08 Jul 2026.

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