Skin cancer is killing people with albinism in Malawi in huge numbers – with the condition reportedly the cause of death among 90 per cent of the community, activists say.
Advocates and climate scientists say climate change is becoming an ever-larger factor in early death.
Official statistics show that 50 people have died of skin cancer since 2020. But Young Muhamba, president for the Association of People with Albinism in Malawi (Apam) believes the death rate is much higher than reported because most cancer-related deaths are not recorded by the government - as high as 90 per cent.
A 2018 census found more than 134,000 of Malawi's 20 million population have albinism – that's about one in every 150 people. It is a rare genetic disorder where a person is born with low or no melanin pigment.
Melanin determines the colour of skin, hair and eyes, leaving those without it with characteristically pale skin, exposing them to sun damage and heightening the risk of developing skin cancer.
Lack of access to sunblock lotions, screening and treatment are creating a preventable tragedy, Mr Muhamba says.
“The truth of the matter is that we have high number of our members dying of cancer in their homes because they don't have access to treatment, since we don't have cancer hospitals in Malawi,” he told The National.
“The victims have no access to early cancer screening services and they usually go to hospitals when their condition reaches advanced stage and are only told to be waiting for their death at home.”
Apam research has found almost 70 per cent of those with albinism in Malawi will not live beyond 30 due to cancer. The average life expectancy in Malawi is 65, according to the World Bank.
The 85 per cent of people with albinism living in rural areas of the south-east African country are even more at risk of developing skin cancer due to their exposure to extreme heat and direct sun resulting from massive deforestation for cultivation and other human activities.
“Most of our members in rural areas have no access to sunscreen lotion to protect them from the hit and direct sun exposure which is directly linked to climate change,” said Mr Muhamba.
In addition, their economic vulnerability is forcing them to engage in domestic works in the sun to find money for their basic needs, which exposes them to cancer risks.”
A devastating toll
Stanzio Joseph, a 24-year-old cancer patient from a remote area in Ntcheu district, in Central region, says he was recently sent home for palliative care from a public hospital because they could not manage his case.
“All I can say is that I am a walking dead person,” he told The National.
“Doctors have told me that there is no treatment for my problem in Malawi unless I go abroad to India, which is not possible for a poor person like me.”
Climate change is considered a “threat multiplier” for vulnerable communities, exacerbating already biting social inequalities as resources are diverted elsewhere to deal with the impacts.
Malawi is already experiencing extraordinary weather events like drought and flash flooding, as well as higher average temperatures.
Last year, Malawi's Ministry of Education suspended afternoon school classes during a heatwave that saw the mercury climb to 40°C in parts of the country.
Rob Kingsley Banda, the only person with albinism working as assistant dermatologist in Malawi, says climate change has become a major life threat for the albinism community in Malawi as main cause of skin cancer.
“We have seen high rates of cancer among people with albinism since we started experiencing extreme heatwaves in Malawi from recent years as a result of climate change,” the medical professional at Kamuzu Central Hospital in the capital Lilongwe said.
“This is due to the fact that our skin is vulnerable to damage due to ultraviolet radiation from the sun so we do not tan and we are easily sunburned. We develop blisters, solar elastosis, actinic keratosis, hence we are at constant risk of developing skin cancer due to sun exposure.”
He says critical shortages of sun lotion in public health facilities and lack of dermatology and ophthalmology services in district and rural health facilities for early cancer screening is further worsening the situation.
The situation among the albinism population is a signal that more needs to be done to combat climate change and mitigate its impacts on vulnerable populations, climate expert Drizzer Ngamanya, from Lilongwe University of Agriculture and Natural Resources, said.
“We need to move with speed to develop alternatives to change the status quo to protect our colleagues with albinism from cancer related untimely deaths,” Mr Ngamanya said.
“For instance, while we are working at stopping deforestation for cultivation and charcoal production as long-term solutions, let's tackle economic problems which expose them to extreme heat and sun-related hardships by engaging them in government's social protection programmes.”
Mr Muhamba stressed the government's need to strengthen supply chain of the sunscreen lotion in all public health facilities across the country to enable easy access, and support provision of sun protective gear such as long sleeve clothes, sunglasses, hats umbrellas to protect them from ultraviolet radiation.
Malawi's Ministry of Health did not respond to a request for comment on what action – if any – it is taking to address the problem.
In the meantime, Malawians with albinism continue to die.