Barriers to Adherence to Hydroxyurea in Rural Global Low Resource Settings: Lessons From Rural Central India and Beyond

Abstract

Sickle cell anemia (SCA) results in significant morbidity and early mortality worldwide. While hydroxyurea is a safe, low-cost therapeutic option, adherence to the drug remains suboptimal, particularly among adolescents and young adults. Patients in rural low resource settings may have unique barriers to hydroxyurea adherence which are relatively less known. Based on informal conversations with patients with sickle cell disease, and healthcare workers caring for these patients, in a very low-income, rural part of central India, certain themes emerged as common barriers to adherence (stigma, belief in faith-based healing, and challenges unique to women). A critical review of the literature was performed to understand if similar barriers have been identified and/or addressed in other global low resource settings. Perceived stigma is a notable part of patients’ experience with SCA, which has been shown to reduce adherence to medications, but no theory-based interventions aimed at preventing or addressing such stigma have been studied. Faith-based healing, within the larger domain of complementary and alternative medicine (CAM), is often used by patients with SCA in conjunction with conventional medicine, but literature to date has not investigated how it might affect hydroxyurea adherence, or the safety of possible drug-herb interactions when hydroxyurea is used concurrently with CAM. Lastly, there is a critical lack of literature around unique challenges that women in rural low resource settings might face with hydroxyurea adherence, but deserves attention given the gender disparities found in medication adherence with HAART. Interventions to support adherence to hydroxyurea need to be investigated, which might be more readily done once sickle cell anemia receives its long overdue attention as a global health priority.