People with albinism face multiple forms of discrimination worldwide. The United Nations (UN) reports that Sub-Saharan Africa has more people with albinism with an estimated 1 in 1,400 people being affected in Tanzania, and prevalence as high as 1 in 1,000 reported for select populations in Zimbabwe and for other specific ethnic groups in Southern Africa. Albinism is still profoundly misunderstood, socially and medically leading to an unsafe environment for people with albinism particularly in Africa. Elsewhere globally, in North America and Europe 1 in every 17,000 to 20,000 people have some form of albinism.
Albinism is a rare, non-contagious, genetically inherited difference present at birth characterised by little or no melanin (The pigment that gives human skin, hair, and eyes their colour) production. According to the UN, in almost all types of albinism, both parents must carry the gene for it to be passed on, even if they do not have albinism themselves. The condition is found in both sexes regardless of ethnicity and in all countries of the world.
This lack of pigmentation (melanin) in the hair, skin and eyes, causes vulnerability to the sun and bright light, thus most if not all people with albinism are visually impaired and are prone to developing skin cancer. There is no cure for this condition. Albinism groups say more than 90% of people with the condition in Africa die before they reach 40-years-old. Sadly, the physical appearance of persons with albinism has much beliefs and myths influenced by superstition hovering around it. Persons with albinism have thus continued to suffer marginalisation and social exclusion leading to various forms of stigma and discrimination.
On 18 December 2014, the General Assembly adopted a resolution proclaiming, with effect from 2015, 13 June as International Albinism Awareness Day.
An overview of threats on people with albinism
Tanzania reportedly has more than 80 people living with albinism killed since 2000. This is a country were body parts can fetch up to more than US$70 000.Witch doctors hunt them for their body parts, which are reportedly used in potions to bring luck and wealth. Victims are often kidnapped and then dismembered by hired killers, or even sold by family members.
According to the United Nations Refugee Agency (UNHCR) about 20 people with albinism have been killed Malawi since 2014. More than 100 other people with albinism, including children, have faced rights violations including abductions and grave exhumations. Since June 2016, the U.N. refugee agency in Malawi has been resettling albino refugees to North America.
It is also reported that the United Nations has been screening eligible albino refugees and their families at the Dzaleka refugee camp in Malawi, home to more than 30,000 people, mainly from the Democratic Republic of Congo, Burundi, Rwanda, Ethiopia and Somalia. It is sad state of affairs that people leaving with albinism have to resort to fleeing their own home lands to ensure safety.
The abuse and violation of people with albinism has gone to the point where people believe having sexual intercourse with a person with albinism cures HIV/AIDS. This has resulted in people with albinism particularly young girls being raped then even maimed and killed. Some of the beliefs including the dead body of a person with albinism can be used to win elections, a football match or to calm an erupting mountain.
A Ray of Hope
With these atrocities, the continent has not been sitting idle. Advocacy which involves people with albinism have been useful in changing perceptions. Last year, the Albinism Society of Kenya were registering people with albinism in Kenya to aid in planning and resource allocation for interventions. The programme, which receives Sh 100million annually for education assessment and resource allocation, has been able to fund several entrepreneurial projects and is also supporting the provision of sunscreen in public hospitals across all counties in Kenya.
In Uganda, Advantage Africa supports people with albinism to keep safe from skin cancer by providing high SPF sunscreen and lip balm, wide brimmed hats, long-sleeved clothing, regular skin checks and surgery. Clearly educating people is key to ensuring that they understand that albinism is a condition which should not be used to discriminate and abuse.
The continent, can and should embrace people with albinism. People with albinism are no ghosts but human beings.