More Than Skin-Deep: The Trials of Persons with Albinism in Malawi

Today was a hot day in Blantyre, and as I went out at lunch time to stretch my legs and explore, I felt the brunt of the near-equatorial sun beating down on me. Explaining to colleagues back in the UK on a Teams call about my adventures in the mid-day heat prompted one to refer to the phrase “only mad dogs and Englishmen”, something that I had not realised was a reference to an old comic poem about the English naivety in stepping out into the sun in faraway countries in the middle of the day with no protection, when those more knowledgeable stay inside.

Except I wasn’t the only one out and about. Blantyre, as ever, was bustling with market traders, motorbike taxis, and people sitting and chatting by the side of the road. We were all roasting under the glare of the midday sun. And it was among this chaos and energy that I saw two people emerge from a shopfront and step into the day, squinting against the light. One of them caught my eye immediately, because it was the first person I have seen with albinism since arriving in Malawi. If the heat was uncomfortable for me, for them it could be deadly.

Albinism is an inherited disorder characterised by little to no melanin production. As melanin is responsible for producing hair, eye, and skin pigmentation, people with albinism usually have pale skin, problems with their vision, and are particularly vulnerable to the sun. It is a condition that is most prevalent in sub-Saharan Africa, and particularly common in East Africa. In Malawi, approximately 134,000 people have albinism, representing about 1 in every 130 people in the country.

A UN expert on albinism, who claimed that people with albinism in Malawi face 'extinction' in 2016 (Source: Getty Images)

People with albinism are particularly vulnerable to the sun’s rays because a lack of melanin means they have little to no protection from harmful ultraviolet radiation. One study conducted in southern Africa suggested that people with albinism were 1000 times more likely to develop skin cancer than the general African population. As climate change makes the hot months in Malawi even hotter, the risk of skin disease and cancer grows exponentially, according to the Association of Persons with Albinism in Malawi (APAM). According to APAM’s estimates, 2 people with albinism in Malawi have died of skin cancer every month since 2020, with APAM President Young Muhamba telling The Guardian earlier this year: “These prolonged hot periods have contributed to high cancer prevalence among persons with albinism in Malawi…The unavailability of sunscreen lotion and non-existence of early-stage cancer screening has posed a great challenge that has led to more than 52 persons with albinism dying since 2020”.

As a result of this worsening crisis, humanitarian organisations have rallied to provide sunscreen lotion where possible, but these efforts are not going far enough. APAM is calling for much more effective healthcare options in Malawi, as currently there is little to no treatment available for skin cancer in the country. As a result, some estimates suggest that skin cancer is responsible for 90% of deaths of people with albinism.

Young Muhamba, President of the Associations for Persons with Albinism Malawi (APAM). (Source: Malawi Voice). 

But even if these health concerns were addressed, the wider impacts of albinism continue to affect people across sub-Saharan Africa. Amnesty International reported that the livelihood and economic impact on people with albinism has further marginalised them from society, as they are less able to work during the daylight hours. The UN and others have called for immediate action and awareness raising for those engaged in humanitarian action on the needs of people with albinism, and global efforts to ensure inclusivity in humanitarian access are also pushing for greater understanding of the additional requirements for support.

However, the sun is not the only threat to people with albinism in Malawi, as many have also been victims of abhorrent acts of violence across the country. In 2019, the UN urged action to prevent further ‘atrocities’ against albino people in the run up to elections, but in 2022 Amnesty reported on another killing of a 3-year-old girl, the latest of many. These attacks are believed to be in relation to a belief amongst certain people in rural areas that the body parts of people with albinism bring good luck. In 2023, APAM’s Young Muhamba spoke to VOA about the 170 attacks against the community that have been recorded since 2014, along with the tampering of graves. In response to this violence, the UN and Malawi Government brought in The National Action Plan on Persons with Albinism to try to reduce their risk, but advocates say it is still falling short.

Despite the efforts of the Action Plan, discrimination against people with albinism marginalises them still further. Many children with albinism fear going to school, due to bullying and maltreatment from both teachers and students. UN programmes in rural areas of Salima, Dedza, and Mangochi Districts have had some success in increasing school attendance, but there remains a long way to go. Although the majority of “witchcraft” related attacks occur in rural areas, those with albinism living in cities are also not safe from violence, due to the supposed cross-national trade in body parts that traditional doctors across East Africa allegedly engage with for folk medicine development.

Lilongwe Albinism Awareness Day Promotional image, organised by APAM. (Source: Facebook)

Life is hard for people with albinism in East and Southern Africa, and it is being made more difficult by the dual threat of climate change and violent discriminatory attitudes. APAM and others are working closely with policymakers, media entities, and community leaders to decrease the risks that people with albinism face, and their work is vital to ensuring this extremely marginalised group are protected. Progress is slow, but there is progress.

Tomorrow in Lilongwe, APAM and Lilongwe City Council are marking the Day for Albinism Awareness with a celebration of the people living with albinism in their community. This year’s theme for the International Day for Albinism Awareness (usually celebrated on 13^th June) is “inclusion is strength”, designed to build on last year’s message “united in making our voice heard”.

Overstone Kondowe, taking charge as the first person with albinism to sit as an MP in Malawi. (Source: VOA news)

In 2021, Malawi elected its first albino lawmaker, in Overstone Kondowe, who is now an MP for Nkhotakota North East, is leading the charge to make the voice of people with albinism heard at the national level in Malawi. In one of his first public appearances as MP, in discussion about whether he would be able to improve inclusivity for people with albinism in social and political life, he was emphatic in his response: “I am ready to do that. And I have also demonstrated my ability to do so when I was acting outside the system. Now, that I am in the centre of the system, I am sure change is coming, not tomorrow, but today.”.

On the Day for Albinism Awareness, and every day, stand in solidarity with persons with albinism.