Identifying gaps in the care and management of NTD morbidity, disability and disfigurement in Africa

Background: Neglected tropical diseases (NTDs) affect about 1.7 billion people worldwide, with the highest burden in sub-Saharan Africa. While global initiatives have reduced infection prevalence, the chronic impacts of NTDs, including morbidity, disability, and disfigurement, remain severely neglected, perpetuating poverty, social exclusion, and mental health challenges. This study aimed to identify gaps in care and management for individuals living with chronic NTD-related disabilities and to validate the situational analysis findings through participatory workshops. Methodology/Principal Findings: A mixed-methods approach was employed, comprising a situational analysis of national policies, healthcare services, and control strategies across the World Health Organization (WHO) African Region, complemented by participatory workshops, including focus group discussions (FGDs) and in-depth interviews (IDIs) with affected individuals and stakeholders, in Zimbabwe and Tanzania. Qualitative data were thematically analysed to capture key challenges, including healthcare access barriers, stigma, and gaps in care and management. The situational analysis revealed critical gaps in chronic NTD care, including lack of comprehensive policies for NTD disability management, fragmented health services, limited access to rehabilitation and mental health support, and where available at all, weak integration of morbidity management into national health systems. Findings from FGDs and IDIs corroborated these findings, highlighting barriers to healthcare access, policy deficiencies, socioeconomic burden, deep-rooted stigma, and psychological distress. Participants emphasised the urgency of integrating chronic care into national health systems, strengthening service delivery, and ensuring financial protection. Conclusions/Significance: Current NTD programs prioritise infection control and disease elimination while neglecting long-term disability management. To ensure end-to-end health service provision, it is imperative to integrate morbidity management, disability support, psychosocial support, and rehabilitation into existing healthcare frameworks, informed directly by the voices of those affected. Ultimately, by bridging the gaps between policy, healthcare, and community engagement, and mainstreaming NTD morbidity management, we can ensure that individuals affected by NTDs receive comprehensive, long-term support, and that progress in disease control translates into sustained improvements in well-being. Author summary: Neglected tropical diseases (NTDs) affect about 1.7 billion people globally, with the highest burden in sub-Saharan Africa. While efforts to control infections have achieved important milestones, less attention has been given to the long-term effects of NTDs, such as disability, disfigurement, and mental health conditions, which can persist long after treatment. These long-term consequences often go unrecognised in national health systems, leaving affected individuals to face stigma, poverty, and limited access to care. We reviewed national health policies in the World Health Organisation (WHO) African Region and conducted interviews and focus groups with people living with NTD-related chronic morbidity, healthcare workers, and other key stakeholders in Tanzania and Zimbabwe. We identified major gaps in care, including limited access to rehabilitation and mental health services, and poor integration of disability care into routine health services. Participants described social exclusion, stigma, and significant financial burdens. Our study calls for a shift in NTD programmes to go beyond infection control and include long-term support and care. Strengthening health systems to provide rehabilitation, mental health care, and social protection, alongside engaging affected communities to shape inclusive policies and services that address their long-term needs, is essential to improving the long-term well-being.