Albinism: myths and reality

Abstract

The establishment of June 13 as International Albinism Awareness Day by the UN General Assembly “as a response to the appeal by civil society organizations that advocate for individuals with albinism as a specific group with specific needs that require special attention” in 2014 was an important step in raising awareness of this condition. However, the Human Rights Watch report From Cradle to Grave: Discrimination and Barriers to Education for Persons with Albinism in Tete Province, Mozambique released on June 13, 2019, is a reminder that there is still much work to do to dispel the myths around albinism and address the discrimination faced by those with the condition. Albinism is a group of disorders inherited in an autosomal recessive pattern that results in little or no production of the pigment melanin, which determines the colour of the skin, hair, and eyes. The prevalence of albinism varies across the world, with the highest incidence in sub-Saharan Africa (between 1 in 5000 and 1 in 15 000 people) and in groups with high consanguinity, such as the Bhatti Tribe in Pakistan (5 in 100 people) and the Kuna people in Panama (between 5 and 10 in 100 people). The lack of melanin in albinism predisposes individuals to skin damage, skin cancer, and visual impairment at an early age. Children with albinism, especially in low- and middle-income countries, do not always have access to sun protection or glasses, increasing their risk of skin and eye damage, and making it difficult to follow school lessons. Thus, school dropout is high among children with albinism. According to Standing Voice, an international non-governmental organisation based in Tanzania, only half of children with albinism complete primary school and only 10% access secondary school (compared with a national average of around 58% in 2017). Low levels of education translate into lower chances of employment later in life and expose people with albinism to enduring poverty. Besides physical impairment, people with albinism suffer from stigma stemming from attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others. Bullying of children with albinism owing to their appearance occurs all over the world, but people with albinism in sub-Saharan Africa are at particular risk. Witchcraft-related beliefs have seen attacks, mutilations, and killings of people with albinism as some believe that their body parts bring good luck. Children are a specific target for this type of violence because the innocence of the victim is deemed to increase the potency of the talisman. In sub-Saharan Africa, there is also the belief that the ritual defilement and rape of girls with albinism can cure HIV/AIDS. Inevitably, such persistent marginalisation and danger have a dramatic impact on the mental health of people with albinism. Specific interventions to dispel existing myths about albinism and guarantee the safety and rights of people with the condition are urgently needed. The Regional Action Plan on albinism in Africa (2017–2021) developed by East African governments, which outlines targets and responsibilities of government, communities, and families for protecting people with albinism and meeting their needs, is the first pan-African attempt to address the problem. The measures proposed in the plan include: training on albinism for midwives and health-care workers, including paediatricians, to provide correct information on the genetic nature of albinism, prevent infanticide, and empower families to take the necessary measures to address the risk of skin cancer and visual impairment; public education and awareness-raising campaigns with involvement of teachers, faith-based organisations and traditional healers through creative use of media; inclusion of people with albinism in social welfare schemes; provision of adaptive devices and vision support in schools; system-wide distribution of sun protection creams, and cancer and pre-cancer treatment at no cost; and review of the criminal law framework for adequacy in response to attacks and violations against people with albinism. However, both the report from Human Rights Watch and recent murders of children with albinism in Tanzania and Malawi indicate that despite this Regional Action Plan, children with albinism still face unacceptable threats and discrimination in their daily life. It is time for all global citizens, including paediatricians, to actively engage in promoting a radical change in the culture around albinism—otherwise, we remain complicit in the persistent violation of the rights of children with albinism.