FAIREST OF ALL?

HEALTH & EDUCATION | FOCUS: ALBINISM IN WEST AFRICA

A new study sheds light on the challenges living with Albinism in Sierra Leone, a condition better known for affecting communities in East Africa.

The United Nations' first independent expert on albinism, Ikponwosa Ero, (L) and Kenya's first Member of Parliament with albinism, Isaac Mwaura, (R) address the media in Kenya's capital Nairobi, November 16, 2016. REUTERS/Katy Migiro


Tanzania, Mozambique, Malawi, Zimbabwe, and even South Africa: The plight of people with albinism (PWA) in these regions has been covered extensively but not always consistently.

Discrimination, persecution, kidnapping, murder, organ and body part trafficking, witchcraft, disease, poverty, and isolation are just some of the horrific dangers facing PWA in the Great Lakes region of East Africa, where the world's biggest concentration of the condition can be found.

The barbarity of some of these reactions in East Africa tends to distract media attention from the hardships of PWA communities elsewhere.

But this week, the Open Society Initiative for West Africa (OSIWA) released the first ever report on the living conditions of PWAs in Sierra Leone named “Harassed, Misunderstood and Forgotten: Challenges faced by Persons with Albinism in Sierra Leone."

Unsurprisingly, the findings were not encouraging.

“Marginalization, discrimination, and stigmatization" define the culture surrounding the PWA community in the West African nation. Admittedly, killings, founded on the belief that PWAs are incarnations of evil forces, or ritualistic dismemberment for body part trafficking (some cults claim the body members of PWAs retain magic powers that are passed to others when eaten, and they sell for tens of thousands of dollars) are much less common in West Africa than in Tanzania and Malawi. However, that does not mean that these communities are not extremely vulnerable.

Discrimination and fear are still widespread, particularly in rural areas. Lack of information about the genetic condition further isolates and marginalizes PWAs.

Furthermore, the medical implications of the disease, which include deficient vision and sensitive skin that is prone to cancer and other debilitating conditions, further challenge the lives of these people. In countries with so much solar exposure such as Sierra Leone, and where poverty is widespread, these people struggle to afford sunscreen products that would prevent skin problems.

The study further indicates that policy action and the creation of civil society organizations that act to protect and support these people are of paramount urgency.

The governments of Sierra Leone, Nigeria, and Cameroon have taken the first steps toward positive action, by documenting the living standards of these people and identifying the major challenges facing them, but the smaller incidence of the condition in this region and the lack of civil society pressure in defence of their rights has slowed the process down.

Elsewhere, in East Africa, the dramatic nature of reactions to the condition has prompted stronger action to try to curb the stigma. Just this month, six women with albinism climbed to the top of Kilimanjaro in Tanzania.

The initiative, dubbed “Climb for Albinism," was aimed at bringing awareness of the condition to the country.

In Malawi, six people with albinism are set to run in the next presidential election in 2019, with programs focused on stopping the killings and kidnappings of PWAs that have been on the rise in the country. In March, Zimbabwe crowned its first “Miss Albino," the winner of a beauty pageant founded this year that aims to tackle the stigma around albinism.

Despite some reassuring initiatives, protective policies for these communities are vastly lacking across the continent. Discrimination against albino communities is not exclusive to Africa, but the continent has a higher prevalence of the genetic condition than most other regions of the world. Reports from Indonesia, Canada, and India have documented the struggles of PWAs with discrimination, and new reports like that of OSIWA in Sierra Leone will be critical in helping to tackle these challenges going forward.