Plaidoyer pour une intégration de l’albinisme oculocutané au sein des Maladies tropicales négligées dermatologiques

Aquaron, Robert and Lund, Patricia and Baker, Charlotte (2023) Plaidoyer pour une intégration de l’albinisme oculocutané au sein des Maladies tropicales négligées dermatologiques. Médecine Tropicale et Santé Internationale, 3 (4).

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Abstract

L’albinisme oculocutané (AOC) est une affection génétique qui, spécialement en Afrique subsaharienne, devrait être considérée comme une Maladie tropicale négligée (MTN). Le développement de cancers cutanés est la complication majeure chez les personnes albinos, aboutissant très souvent à leur décès. Cette létalité est bien connue et a été signalée dans de nombreuses publications médicales. Dans ces pays, les personnes albinos font très souvent l’objet de discriminations culturelles, sociales, médicales, morales et économiques. La personne albinos est considérée comme un « Africain blanc », une créature intermédiaire entre les humains et les esprits/génies, dotée de pouvoirs innés pouvant faire le bien et le mal. Cette particularité a fait du corps de la personne albinos l’objet de mutilations, de violences sexuelles et/ou de crimes rituels en vue d’utiliser certains organes pour la préparation de talismans supposés porter chance, santé et prospérité. Sous l’influence d’ONG internationales et d’associations africaines d’albinos, francophones, anglophones et lusophones, les instances de l’ONU, l’OMS (Organisation mondiale de la Santé) et l’UNESCO (United Nations Educational, Scientific and Cultural Organization) ont réagi. Le 13 juin 2013, une résolution pour combattre ces agressions et discriminations a été votée. Dès lors, cette date est devenue la « Journée internationale de sensibilisation à l’albinisme ». Elle est fêtée avec éclat et panache, en particulier par les nombreuses associations des pays d’Afrique subsaharienne. L’OMS vient d’ouvrir en juin 2022 un cadre stratégique pour le contrôle et la gestion des MTN se manifestant principalement au niveau de la peau. Bien que ce projet soit limité actuellement aux dermatoses de nature infectieuse, nous développons dans cette tribune notre plaidoyer pour l’intégration de l’AOC parmi les MTN. Oculocutaneous albinism (OCA) is genetically transmitted. In this paper we advocate for this disease to be included in the NTD list of the WHO. OCA type 2 is the most common form of albinism in sub-Saharan Africa, with a prevalence of 1 in 7900 among the Bamileke of Cameroon, 1 in 3900 in South Africa and 1 in 1100 among the Ibos of Nigeria, as compared to a prevalence of 1 in 10,000 among African Americans and 1 in 36,000 among White Americans and Europeans. The medical problems related to ophthalmological aspects (poor visual acuity, ametropia, nystagmus, photophobia) and dermatological aspects of albinism (sensitivity to UV rays from the sun and development of skin cancers) are well known. However, their management is often challenging for persons with albinism in sub-Saharan Africa because of their financial burden and the difficulty of accessing medical specialists. In many African countries, persons with albinism are also very often the subject of social, cultural, medical, moral and economic discrimination, which can limit their access to education, employment and community life. They are considered ‘white Africans’, intermediary and incomplete, with innate powers for good and evil. This particularity has made persons with albinism the targets of mutilations and/or ritual attacks for the purposes of using their body parts in the preparation of charms to bring good luck, health or prosperity. On 13 June 2013, as a result of lobbying by the Canadian NGO Under the Same Sun and African albinism associations, United Nations bodies including UNESCO and the WHO (World Health Organization) responded and a Resolution addressing the discrimination and attacks was voted in. The date has since become International Albinism Awareness Day and is celebrated on a different theme each year with great energy and impact, especially by French, English and Portuguese speaking albinism associations across sub-Saharan Africa. In 2015 the Human Rights Council created the position of Independent Expert on Albinism to better collect and analyse data on the rights of persons with albinism around the world, and especially in countries where ritual attacks occur. The data collected by albinism associations and the authorities thus go directly to the UN Human Rights Directorate. Despite this international attention to the attacks on persons with albinism, one of the biggest threats is skin cancer, which very often leads to early death. In 2022, the WHO launched a strategic framework for the control and management of neglected skin-related neglected tropical diseases – an additional reason to include oculocutaneous albinism as an NTD. Although the focus is currently limited to dermatoses of an infectious nature, we argue here for the integration of oculocutaneous albinism among NTDs because the deadliness of these carcinomas in sub-Saharan Africa is well-known and has been examined in a number of medical publications. Here, we propose that oculocutaneous albinism in sub-Saharan Africa be classified as an NTD to help people with albinism have access to health, economic, social and cultural rights.