12 October 2020 | Geneva –– Women in sub-Saharan Africa affected by genital schistosomiasis suppress their health-seeking behaviour and are reluctant to speak about their condition, fearing matrimonial and societal consequences. Children as young as 12 years with swollen legs from lymphatic filariasis are booed at school. People with leprosy resist health-seeking behaviour for fear of stigmatization and ostracization. Buruli ulcer is often attributed to mystical causes, prompting people to seek treatment from traditional healers. Individuals affected by Chagas disease are discriminated against because the disease is almost always associated with the poorest populations who live in thatched homes infested by triatomine bugs that can carry Trypanosoma cruzi, the causative parasite.
These are a few real-life stories that panelists evoked to illustrate the stigmatization, discrimination and societal attitudes towards people affected by neglected tropical diseases (NTDs) and the link with mental health during the webinar on What role does disability, stigma and mental health play in achieving the NTD road map targets? held on 7 October 2020.
Individuals affected by neglected tropical disases are often reluctant to speak about their conditions, fearing societal consequences.
Panel one: NTDs and disease management, disability and inclusion (DMDI) as an essential component of achieving universal health coverage (UHC)
Vim Van Brakel, Medical Director, Netherlands Leprosy Relief, explained that DMDI is a holistic approach for providing person‐centred services that include mental health and well-being. He said that people with disability should be included in NTD programmes so that the world can achieve UHC.
Shamsuzzoha Babar Syed, Coordinator, WHO Quality of Care, urged countries to be the driving force in refining and developing their health programmes. The new road map provides important opportunities to extend health services for all in this decade and aims to link NTDs with UHC and quality of services.
Maneesh Philip, Director, International Programmes of Effect Hope, Canada spoke of the importance of strengthening health systems to improve quality and achieve a holistic, patient-centred approach. He gave examples of both successful implementation in collaboration with national health systems of DMDI to stimulate community involvement into Effect Hope programmes in Bangladesh, Cộte d’Ivoire, India and Kenya and of community health centres closer to peoples’ homes prompting a higher degree of trust through better access to treatment and care.
Panel two: People, rather than diseases
Mathias Duck, Chair, ILEP Advisory Panel of Persons Affected by Leprosy, explained the importance of inclusion in finding solutions for people affected by NTDs. He said that people affected by NTDs are experts by experience and, as an illustration, that no other person can know better how it feels, for example, to be a woman affected by podoconiosis in rural Ethiopia apart from that woman. When confronted by stigma, these people help one another from their own experiences.
Jenny Sanchez, President, Latin American Society of Chagas, US, described how her organization continues its fight to recognize the rights of and empower those suffering from the disease. She said the world should view Chagas disease along the same lines as other diseases and not just as a problem that affects only poor people.
Emmanuel Agumah, President and Founder of BUVA Foundation, Ghana spoke of the trauma caused by Buruli ulcer and how he had to undergo multiple surgeries over almost three years. He noted the importance of involving survivors and people affected by NTDs in advocating for NTDs to encourage health-seeking behaviours and reduce stigma. He also explained how traditional thinking tends not to respect people who end up with disability due to a disease. He said his personal suffering motivated him to share knowledge about and advocate for early detection and treatment against this disease.
Christine Masong, Organisations des coordinations pour la lute contre les endemies en Afrique Centrale, spoke about the misdiagnosis and undiagnosis of female genital schistosomiasis (FGS) and their impact on women’s mental and physical health, particularly in sub-Saharan Africa. She referred also to “internalized” and “anticipated” stigma and their effects on the reproductive and sexual health of women. She recounted the life history narratives of women with FGS and how traditional African communities view them in their sexual and reproductive health role. In such settings, women with FGS lose what she called their “social wealth and strength”, face huge levels of stigma and undergo serious mental health effects.
Panel three: Mental health of people with neglected tropical diseases
Samhita Kumar, Associate Director, Mental Health Programme, The Carter Center, talked about the importance of and need for greater advocacy for NTDs and mental health. She said that harnessing the power of the media can further educate the public around these issues and spoke of “hope clubs” in Nigeria and Haiti that are helping patients with lymphatic filariasis deal with the stigma of this debilitating disease. She said when people improve their mental health, the likelihood of their participation in their own health care, including NTDs, is also improved.
Maya Semrau, Research Fellow, Implementation Research, Global Health and Infection Department, Brighton and Sussex University, UK situated integration as essential to inclusion and in addressing the needs of affected people holistically. She said mental health should be integrated into social services for people living with NTDs and included into community‐level programmes and policies.
Palmira Fortunato, Ministry of Health, Mozambique described how her country has integrated mental health into primary health care services and noted the benefits of integration to communities affected by NTDs. She explained how training was provided to primary health care workers who have been able to detect early signs of mental symptoms, reduce treatment gaps and undertake referral to specialized centres.
Julian Eaton, Medical Health Director, Christian Blind Mission Global Disability Inclusion, UK spoke of the new NTD road map’s potential to address issues related to NTDs and mental health through inclusive, integrated approaches. He spoke of the recognition of the mental well‐being of people affected by NTDs and hoped for the support and involvement of the mental health community in the elimination of NTDs.
Closing remarks and launch of WHO’s guide on mental health of people with NTDs
Devora Kestel, Director, WHO Department of Mental Health and Substance Use, summarized the three main links between NTDs and mental health as she formally launched WHO’s first guide on the Mental health of people with neglected tropical diseases: towards a person-centered approach.
First, the work evidences how pain, disability and stigma put people affected by NTDs at high risk of mental depression, anxiety and even suicidal thoughts. These combined social and economic implications are being investigated and should be addressed as a priority. Secondly, she explained the importance of organizing care that includes neurological aspects and substance use as integrated approaches to provide services at community level as part of UHC. Thirdly, implementation of appropriate measures against stigma and discrimination is feasible and can be effective.
Dr Mwelecele Ntuli Malecela, Director, WHO Department of Control of Neglected Tropical Diseases, highlighted the importance of multisectoral action in implementing measures to enable people affected by NTDs to get the support they need. She spoke having seen, first hand, the mental effects of NTDs, leading in some cases towards a tendency to commit suicide and in others the stigma that they can cause in young people who are discriminated against at school. She said while some put up the courage to fight such discrimination, it is sad that in many cases such stigmatization takes its toll.
The cross-cutting nature of the new road map will enable work to tackle such social and mental issues with a compassionate, patient-centred approach and provide the quality of care to people impacted by NTDs. Investments and collaborative work are required to provide equitable, accessible, compassionate and rights-based primary and holistic health care to people.