addressing stigma, discrimination and mental health through a person-centered approach

Women in sub-Saharan Africa affected by genital schistosomiasis suppress their health behavior and are reluctant to talk about their condition, fearing marital and social consequences. Children under the age of 12 with swollen legs from lymphatic filariasis are scouted at school. People with leprosy resist behaving in search of health for fear of stigmatization and ostracism. The Buruli ulcer is often attributed to mystical causes, forcing 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 living in straw homes infected with triatomine beetles that can carry the pathogen Trypanosoma cruzi.

These are some real-life stories challenged by the panelists to illustrate the stigmatization, discrimination, and societal attitudes toward people affected by neglected tropical diseases (NTDs) and the connection to mental health during webinars on What role do disability, stigma and mental health play in achieving the goals of the NTD roadmap? held on October 7, 2020

First panel: NTDs and Disease Management, Disability and Inclusion (DMDI) as an essential component of achieving universal health coverage (UHC)

Wim Van Brakel, Medical Director, Dutch Loss Relief, explained that DMDI is a holistic approach to providing services targeted at people that include mental health and well-being. He said people with disabilities should be included in NTD programs so the world can achieve UHC.

Shamsuzzoha Babar Syed, coordinator, WHO Quality of Care, called on states to be a driving force in purifying and developing their health programs. The new roadmap provides important opportunities to expand health services for all in this decade and aims to link NTD with UHC and service quality

Maneesh Philip, Director, International Programs of Effect Hope, Canada, spoke about the importance of strengthening health systems to improve quality and achieve a holistic patient-centered approach. He gave examples of successful implementation of DMDI in collaboration with national health systems to encourage community participation in Effect Hope programs in Bangladesh, Côte d’Ivoire, India and Kenya, and health centers closer to people’s homes, leading to a greater degree of trust through better access to treatment and care.

Panel two: People, not diseases

Mathias Duck, chairman of the ILEP Advisory Board for People Affected by Leprosy, explained the importance of getting involved in finding solutions for people affected by NTDs. He said people affected by NTDs are experts by experience and, as an illustration, that no other person can know better what it feels like, for example, to be a woman affected by podoconiosis in rural Ethiopia, other than that woman. When faced with stigma, these people help each other from their own experiences.

Jenny Sanchez, president of the Latin American Chagas Society, USA, described how her organization continues to fight for the recognition of the rights and empowerment of people suffering from the disease. She said the world should look at Chagas disease in the same way as other diseases, not just as a problem that only affects poor people.

Emmanuel Agumah, president and founder of the BUVA Foundation, Ghana, spoke about the trauma caused by ulcer Buruli and how he had to undergo multiple surgeries over nearly three years. He noted the importance of involving survivors and people affected by NTDs in advocating for NTDs to encourage health-seeking behaviors and reduce stigma. He also explained that traditional thinking usually does not respect people who end up with a disability due to illness. He said his personal suffering motivated him to share knowledge and advocate for early detection and treatment of the disease.

Christine Masong, Organization for the Coordination of Continental Luten Spills at Afrique Centrale, spoke about misdiagnosis and underdiagnosis of female sexual schistosomiasis (FGS) and their impact on women’s mental and physical health, especially in sub-Saharan Africa. She also referred to the “internalized” and “expected” stigma and their effects on women’s reproductive and sexual health. She told stories about the life history of women with FGS and how traditional African communities view them in their role in sexual and reproductive health. Under such conditions, women with FGS lose what she called their “social wealth and power,” face enormous levels of stigma, and undergo serious mental health effects.

Panel three: Mental health of people with neglected tropical diseases

Samhita Kumar, Assistant Director, Mental Health Program, Carter Center, spoke about the importance and need for greater advocacy for NTD and mental health. She said that harnessing the power of the media can further educate the public on these issues, and she also spoke of “hope clubs” in Nigeria and Haiti that help patients with lymphatic filariasis cope with the stigma of this debilitating disease. She said that when people improve in mental health, the likelihood of their participation in their own health care, including NTD, also increases.

Maya Semrau, Research Fellow, Implementation Research, Department of Global Health and Infections, University of Brighton and Sussex, UK, positioned integration as key to engaging and comprehensively addressing the needs of affected people. She said mental health should be integrated into social services for people living with NTDs and included in community-level programs 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 into communities affected by NTDs. She explained how education is provided to primary care workers who have been able to detect early signs of mental symptoms, reduce treatment deficiencies and refer to specialized centers.
Julian Eaton, Director of Healthcare, Christian Blind Mission Global Disability Inclusion, UK, spoke about the potential of the new NTD roadmap to address NTD and mental health issues through inclusive, integrated approaches. He spoke about recognizing the mental well-being of people affected by NTDs and hoped for the support and involvement of the mental health community in eliminating NTDs.

Closing remarks and launch of the WHO Guide to the Mental Health of Persons 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 officially launched the first WHO Guide to the Mental Health of People with Neglected Tropical Diseases: Towards a person.

First, the paper shows how pain, disability, and stigma put people affected by NTDs at high risk for mental depression, anxiety, and even suicidal thoughts. These combined social and economic implications are being explored and should be addressed as a priority. Second, she explained the importance of organizing care that includes neurological aspects and the use of substances as an integrated approach to community-based service delivery as part of the UHC. Third, the implementation of appropriate measures against stigma and discrimination is feasible and can be effective.

Dr. Mwelecele Ntuli Malecela, Director, WHO Department of Neglected Tropical Diseases Control, stressed the importance of multisectoral action in implementing measures to provide the necessary support to people affected by NTDs. She spoke seeing first-hand the mental effects of NTD that lead in some cases to suicidal tendencies, and in others to the stigma they can cause in young people who are discriminated against in school. She said that while some give courage in the fight against such discrimination, it is sad that in many cases such stigmatization takes its toll.

The cross-sectoral nature of the new roadmap will enable work to address such social and mental problems through a patient-centered compassionate approach and provide quality care to people affected by NTDs. Investments and working together are needed to provide people with fair, accessible, compassionate and primary and comprehensive rights-based health care.