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The plight of albinos
The Chronicle (Zimbabwe)
January 17, 2006

http://www.zimbabwechronicle.com/inside.aspx?sectid=1284

Miss Annatoria Mbazo (39) hates cloudy weather. An albino, Miss Mbazo says radiation from the sun that comes through cloud cover is dangerous for her skin.

"The heat that comes under cloudy weather conditions is very bad, worse than when it comes from a clear sky. I feel it," she says, drawing the curtains of her lounge to look up the clouds.

"It is even more dangerous if one does not have chemicals that protect the skin against the sun’s heat," she added, referring to sunscreen lotions, which albinos use to protect their highly sensitive skin against heat.

The chemical is key to the wellbeing and even basic survival of albinos. But because of the harsh economic environment the chemical is very expensive as it is imported. This puts the lives of albinos at risk of contracting diseases and in some instances, could cause death. In Zimbabwe albinos are encouraged to use a sunscreen lotion called Sun Protector Factor 40 (SPF 40) which is imported, mainly from South Africa.

However, with the prevailing foreign currency shortage, which has pushed up its price, most albinos are unable to buy the critical chemical, exposing themselves to skin cancer that could result in death. When Miss Mbazo last bought a 200millilitre bottle of the chemical in November last year its price was $800 000. Now the price has risen to more than $2 million.

Albinism is a condition in which the black pigment is absent in someone’s body cells and the yellow present only in small amounts.

Miss Mbazo says the 200millilitre bottle is enough for use on the face, hands, legs and other parts of the body that are exposed to the sun for three weeks. The chemical is sometimes not available in pharmacies. "It is not always there. Even if it were, it would be very expensive for an average albino to buy.

"Only a few who have money to import the lotion and those with relatives abroad can now afford the chemical. The majority does not," she said.

Miss Mbazo, a secretary in Bulawayo, said she has a relative who works in South Africa who sometimes buys the lotion for her. Being a professional, she says she is luckier than her jobless colleagues since she can buy it with her own money.

When Chronicle visited her at her New Lobengula home last week, she had a hat on despite being indoors.
She had some reddish pimples on the face and other parts of the body She said it was advisable for an albino to consistently use SPF from early stages in their lives to minimise chances of developing skin cancer, which kills many of her kind.

The unavailability and high cost of the chemical, she adds, means that the life of an albino is very expensive yet many of them are jobless.

"It is unfortunate in that many of us are jobless because employers tend to shun us because of our condition. As a result many people have no money to buy it. They also need hats, footwear, longsleeved shirts and blouses, long skirts and trousers."

Albinos who lack such clothing and SPF 40 are more susceptible to suffering from skin cancer. Apart from their skin, their eyes are also sensitive to direct heat, so they are advised to always wear spectacles, which are also very expensive.

In the event that they see signs of the development of skin cancer, albinos need to seek radiotherapy, which is also very expensive. Parirenyatwa Hospital, in Harare, is the only public hospital in the country that offers radiotherapy. The service is also offered at Avenues Clinic, a private healthcare institution in the capital.
Radiotherapy is done to remove dead cells from one’s skin.

Miss Mbazo underwent the treatment last year and had to be detained at Parirenyatwa Hospital for six months.
"I paid $26 million for that. I struggled to pay it yet I am gainfully employed. If someone who is jobless had such a problem, I tell you they would be dead by now because they simply cannot afford it."

She said she was lucky to be diagnosed with a mild skin cancer which was not the fatal malignant type.

Describing sunscreen lotion as a "necessity not a need," Miss Mbazo urged the Government to make available the lifesaving chemical at subsidised prices at all public health institutions to enable albinos to access it more easily.

The Deputy Minister of Health and Child Welfare, Dr Edwin Muguti, said the Government was committed to helping the albino community. He however, urged them to approach the Government for assistance.

"They must come to us. We are always available to speak to them and respond to their concerns in the best way we can," said Dr Muguti.

Mr Richard Nyathi, the deputy secretary of the Federation of Organisations of Disabled People in Zimbabwe, said since most albinos lived in rural areas where living conditions are generally adverse, more sunscreen lotions must be made available there.

"We need Government assistance to overcome this. My plea to the Government is that measures must be put in place to distribute the important chemicals countrywide, especially to rural areas where most of our members live.

"Living conditions are also mostly hostile in rural areas so the lack of the lotion is more telling there than in urban areas. We have a problem of the price of the chemical and the cost of distribution to areas of need. If subsidies are provided for malaria drugs, we think the same can be done with sunscreen lotion. Skin cancer is just as lifethreatening as malaria," he said.

Mr Nyathi, who is also director of Parents of Children with Albinism, said albinos were vulnerable to unnecessary suffering and untimely death because of lack of sunscreen lotion.

He said although there was no official record of people dying as a result of skin cancer in the country, "it is common cause that many people are dying because of it."

Miss Mbazo said she had friends who died of malignant cancer recently after failing to access sunscreen lotions for long periods.

"We urge the Government to ease import regulations of the lotions. We want to alleviate the suffering of the people and in some cases to avert death.

"Some people end up using SPF 8, which is cheaper but gives minimal protection against heat," she said.
Mr Nyathi said his organisation was raising awareness among the people on the need for albinos to take the necessary precautions to avoid skin cancer. In the past, he added, the albino community got assistance from donors but now the aid has dried up.

However, parents of children with albinism in Bulawayo are not just waiting for assistance from donors and the Government. They are undertaking a number of projects to ensure that the albino community is provided with its requirements.

"We established a burial society some time last year to help our members," said Mr Nyathi.

"We have so far helped two families. We also have a grocery club with about 50 members where we pool our resources and buy groceries for ourselves."

The club is also setting up a market gardening project at a rented 10 900 squaremetre stand in New Lobengula.

"The club is looking for money to survey the area and to build infrastructure for security and administrative purposes. We are not just waiting to get donations from outsiders because our members are making monthly contributions to the project," he said, adding that the longterm goal was to spread the initiative to other areas nationwide.

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