Nigerian Albinos: Succumbing to Neglect

The health of albinos should be given priority

It is still not the best of times for people living with albinism in Nigeria due to the absence of special care needed for the over six million albinos in the country. Martins Ifijeh writes

In the quiet town of Emuhi, a small community in Edo State lives Abel, a young and hardworking albino who happens to be the bread winner of the house with aged father and two sisters to take care of. Like most youths in a village setting where regular office jobs are difficult to come by, Abel owns a large pineapple farm which serves as a means of livelihood for the family.

But for him to harvest pineapples that would attract buyers, Abel would have to work every day, all day under intense sunlight in the farm, which is quite terrible for people without pigmentation. The skin on his face, legs, hands and back of the neck could tell the story of his life. The indentations on the skin could be signs of bigger health issues, but Abel believes life has left him with no option, he must continue to tilt the ground under intense sunlight for him and the rest of the family to eat.

Even though life has served him lemons, Abel has tried to make lemonades out of it …but without success. He goes to the farm dressed like the Geledemasquerades of Osun State because he feared what the sunlight was doing to his body. He ties his head with a piece of cloth, wears clothes that covers up to his fingers and feat and then wears a robe around his neck but yet the intense sunlight has done harm to his skin already. He is no more the cool white guy his mates used to call him back in the days.

Despite Abel’s efforts to fight through life, he is still being stigmatised by people around him. “Sometimes children laugh at me when I’m walking on the street. But I’m not bothered because it has been like that since I was a child,” Abel explained.

Same is for little Yemi, who attends one of the primary schools in Surulere. Just when her classmates are up for recreational activities, she hides under the shade because her mum has warned her against entering the sun. Her skin bites every time she wears her school uniform that exposes her hands, neck and legs when under the sun.

Like adding salt to injuries, Yemi is being stigmatised everyday by her peers. They see her as different and someone unable to see clearly. True, focusing on a small object is a big task for her because it affects her sight as well. No special consideration has so far been given to her by her teachers because she is unable to see the blackboard clearly. All she does is ask her seat mate to spell what is written on the chalk board. Teachers often believe her pace is too slow for them, hence they ignore most of her questions.

Abel and Yemi are not alone on this. There are over six million persons living with albinism in Nigeria who are at risk of skin cancer due to the scorching sun in this part of the world. The government’s inability to sustain the free skin care treatments for all albinos and provide other palliative measures has not helped matters in any way. More than six million albinos in Nigeria are also battling with stigmatisation and discrimination because of their skin colour.

Despite the huge number of Nigerians living with albinism who are at risk of the issues listed above, the government and stakeholders have continued to pay lip service to tackling albinism.

Recall that sometime last year, the President of The Albino Foundation (TAF), Mr. Jake Epelle, decried the lack of government’s promise to clear the sunscreen creams which were ordered by the foundation for the millions of albino children and adults who would need them against skin cancer.

He said last year that, “we were able to procure sunscreen but it was on an agreement that government will pay the manufacturers and we will be able to clear them. The
government has not paid them (manufacturers). It is at the port and the port authorities will not allow us to clear and pretty soon, it will expire. If it comes in, 400,000 Nigerians will benefit from it. So we are saying give us opportunities to procure these sunscreen.”

The lack of priority by government in persons living with albinism has also in no small measure played out in the free skin cancer prevention and treatment project championed by the government and executed by the National Hospital, Abuja. Just recently, the government had made a bolt face and reneged on that agreement, living albino skin cancer patients at the mercy of the disease.

Just last week, Epelle revealed that the Federal Government has stopped the free skin cancer prevention and treatment project for persons living with albinism, adding that this has resulted in more deaths of albinos in recent times due to skin cancer.

Recall that in 2007, the Federal Government approved free skin cancer prevention and treatment project with the National Hospital, Abuja, such that persons living with albinism who consequently have been diagnosed with skin cancer can access free treatment in the hospital.

The programme which started on a high note has so far benefitted about 2,500 albinos, according to available records. But the government has refused to finance the project thereby bringing an abrupt end to free skin cancer treatment for the thousands of albinos needing it.

Epelle has also appealed to the Federal Government to assist in the payment of the N120 million sunscreen cream acquired on credit to reduce the rate of skin cancer among albinos, adding that the sunscreen cream which is about 300,000 pieces will go a long way in reducing the high rate of albinos with skin cancer.

He said with the free cancer treatment for albinos at the National Hospital put on hold, it therefore necessitates exploring other intervention strategies, adding that it was important to dialogue with government and other stakeholders on how to resume free treatment of skin cancer for people with albinism, not just at the National Hospital, Abuja but also in other federal and state owned government hospitals.

He said albinos were susceptible to skin cancer because of their delicate skin type. “The sunscreen was gotten at a cheaper rate to alleviate the plight of albinos, we will be concentrating on children, students and the leftover of the sunscreen creams will be given to adults. Unprotected exposure to the sun increases the possibility of skin cancer and other skin
diseases in persons with albinism,’’ Epelle said.

Meanwhile, when THISDAY contacted the Public Relations Officer, National Hospital, Abuja, Dr. Tayo Haastrup, he explained that the hospital has not stopped treatment for albinos despite been owed over N50m by the group. “We have told them to reach out to philanthropists and stakeholders to assist in clearing their depths because we are also spending fortune on drugs and other treatment materials for them,” he added.

According to a social health worker whose son is living with albinism, Francesca, she said government should stop paying lip service to issues relating to albinos, adding that even in schools albinos were not only stigmatised by their peers, but even teachers as well.

“Before I took my son to the school he is now, the head teacher promised to give him special attention because his sight is not so good, but most times I hear complains from my son over inability to see the chalk board and the teachers’ inability to assist him anytime he calls for special help,” she added.

Francesca said a lot of albinos have also been stigmatised. “Some persons have had to loose their jobs or being refused jobs because they are albinos. In some areas people boo albinos when they are walking on the road. All these are stigmatisation and the government should put stringent legislations on ground to curb it,” she added.

According to the National Organisation for Albinism and Hypo-pigmentation, albinism is a group of genetic conditions that causes lack of pigmentation in the skin. This genetic condition can affect only the eyes (ocular albinism) or both the eyes and skin (oculocutaneous albinism), as well as affect hairs.However, most types of albinism are inherited when an individual receives the albinism gene from both parents. Affected people have white skin and hair, and in some cases, reddish eyes. The condition can lead to vision loss, extreme sun-sensitivity and psychological issues stemming from embarrassment.