Stigma still keeping albinos  away from health facilities

Mutesi decided to visit another government health facility but the medical personnel she found there allegedly told her to undress before he called in other medical staff to come and see her body. 

“This was very disappointing as I couldn’t believe medical professionals could act in that way. I decided to go back home and kept away from health facilities until I gave birth, alone in the house without any assistance from any medical personnel,” she says.

Mutesi was also abandoned by the father of her child and she has since not seen him two years later. 

She recalls him telling her they don’t accept Albinos in his family and that she was a misfortune.

Such cases are some of the push factors that make people with albinism to shun health facilities.

Elizabeth Negesa, an another woman living with albinism, also the director of Elgon Foundation for Persons with Albinism, says people like her are isolated and fail to access proper medical care.

She recounts how she went to a health facility in Mbale City and she was reportedly denied services. 

“When I approached the medical personnel, she was tough as she asked why I had visited the facility,” she says, before narrating how she was told to undress and then the medical personnel tipped other nurses to come and see her body. 
“I regretted why God created me after nurses laughing at me,” Negasa says.

Negasa says she was immediately pushed aside and the medical personnel started working on other patients. 
“This made me cry as I walked out of the hospital premises. I couldn’t narrate the ordeal to anybody there since even patients were trying to distance themselves from me,” Negesa says.

She went back home and stayed without medication. She had conceived and fortunately, she was able to give birth alone at home. Negesa says even taking a child for medication or immunisation was not easy as health workers kept on ignoring her. 

Negasa decided to start up an organisation to fight for the rights of albinos in Uganda. 

Besides the stigma they face, people living with albinism also fall victim to people with weird beliefs about them.

“Men have a belief that when they sleep with an albino woman, they get cured of HIV/Aids. In the process, these women acquire sexually transmitted diseases besides getting unwanted pregnancies. This not only leaves the victims struggling to get medication but also raising children as single parents,” Negesa says.

Negesa has so far registered 489 people living with albinism, who have medical challenges in the two regions of Elgon and Ssebi in eastern Uganda.

“We tried to raise our issues to a commissioner in the Ministry of Gender but he didn’t give any hopeful reply.”
Negesa says they have tried to join groups of different People with Disabilities (PWDs) but the government has failed to come out and help them fight for their rights.

“Even when government is preparing its budget, they do not in any way allocate a budget for us people living with albinism. We feel isolated and this makes us live a miserable life,” she said.
She says given their condition, they sometimes need to make frequent visits to the health facilities.

“As we grow older, the muscles weaken, sometimes a change in the environment affects our eyes thus the need to see an eye doctor so often,” Negesa explains.

Negesa says at least two people living with albinism die of skin cancer every month due to lack of access to proper medical care. She says she has so far registered 30 people living with albinism with skin cancer since November last year.

Doctors and human rights defenders in Uganda have condemned the act of denying people living with albinism medical care because of their skin colour. They say they have a right to health services just like any other person.

Dr Paul Bukenya, a medical specialist at Kawolo Hospital in Buikwe District, says everybody is entitled to access medical care at any health facility.

“People living with albinism should not be discriminated against in medical facilities because they are human beings like others and it is their right, guaranteed by the Constitution of Uganda,” he says.

He says by denying people living with albinism medical services, Uganda will not know or get the right statistics of people with different kinds of needs. 

He says when that happens, some of the victims end up getting what is not right for their health as they resort to self-medication. 

He adds that this hampers general healthcare service delivery. 
“Discrimination and stigma will always lead to an increase in HIV/Aids as people will fear to go to health facilities,” he says.

Hassim Magumba, the chairperson of Mpungwe Sub-county in Mayuge District and a leader of people living with albinism in the district, says: “When the government is designing sexual health programmes, people living with albinism are not always included, yet they are always sexually harassed. Some are raped, defiled, and infected with HIV/Aids by heartless men who lure them into sex.”

He appeals to all stakeholders to pay attention to people living with albinism since they too are sexually active like other people. 

“They are entitled to proper medical care just like any other person,” he says.

The Gender ministry spokesperson, Frank Mugabi, says: “People living with albinism are included under the PWDs and are not supposed to be discriminated against because it is against the law. They should report to local authorities so that their issues are addressed.”

About albinism

Albinism is a congenital disorder characterised in humans by the complete or partial absence of pigment in the skin, hair and eyes. 

It is associated with a number of vision defects such as photophobia (intolerance of light) and nystagmus (a vision condition in which the eye fails to achieve normal visual activity).

Lack of skin pigmentation makes for more susceptibility to sunburn and skin cancers. 

Hassan Mulondo, the general secretary of Association of Uganda (Africa Albino Foundation) says Uganda has about 250,000 people living with albinism.

In Uganda and other parts of Africa, albinism is still profoundly misunderstood, socially and medically.

For a number of years, the United Nations (UN) has underlined the extreme discrimination faced by people living with albinism. In 2013, the UN Human Rights Council called for the prevention of attacks and discrimination against people living with albinism.

 In December 2014, the UN General Assembly adopted a resolution proclaiming June 13 each year as International Albinism Awareness Day. 

In 2017, the International Bar Association proposed universal standards for the protection and promotion of rights for people living with albinism. 

According to a June 2020 UN report, it is estimated that in North America and Europe, one in every 17,000 to 20,000 people have some form of albinism. 

The condition is much more prevalent in Sub-Saharan Africa, with estimates of one in every 1,400 people being affected in Tanzania and the prevalence as high as one person in 1,000 across Africa. 

In some countries, majority of persons living with albinism aged between 30 and 40 years die from skin cancer. Skin cancer is highly preventable when persons living with albinism enjoy their rights to health.

This publication has been written as part of the CHARM 2020 Media Fellowship. It is funded by the Swedish International Development Cooperation Agency (SIDA).