Health

Zimbabwe Campaign Offers New Hope for People With Albinism

 

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Perrence Nyamapfeka and (foreground) Owen Nyamapfeka, siblings living with albinism, play with each other outside of their home in Hatcliffe Extension, a settlement in the country’s capital, Harare. Kudzai Mazvarirwofa, GPJ Zimbabwe
Zimbabwe

People living with albinism, long stigmatized in Zimbabwe, struggle to get much-needed sunscreen protection. One campaign is looking to change that, but there are challenges.

HARARE, ZIMBABWE — “The twins developed those black spots three years ago,” says Steven Nyamapfeka, pointing to his 9-year-old sons.

Nyamapfeka is a father of seven, and his four youngest children are living with albinism. The 62-year-old says his children are at risk of developing skin cancer because in Zimbabwe, sunscreen lotions are hard to come by.

Nyamapfeka receives donations of sunscreen through a campaign jointly run by the mining company Zimplats and the Ministry of Health and Child Care. But the sunscreen, which is supposed to come each month, arrives more sporadically than that.

He says the Beyond This Skin campaign was launched last year to raise awareness about the genetic condition that results in a lack of melanin and to support members of the Zimbabwe Albino Association (ZIMAS), a nonprofit that has been in operation for nearly 22 years.

Despite the sporadic sunscreen donations, the Nyamapfeka family has found a way to make things work. A few bottles of lotion go a long way in their home. Nyamapfeka and his wife put the sunscreen only on the children’s hands, faces and necks – parts of the body that their clothes don’t cover.

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Steven Nyamapfeka poses with his youngest child, Lois Nyamapfeka, outside their home. She wears long-sleeved clothing to protect her arms from sunlight.

Kudzai Mazvarirwofa, GPJ Zimbabwe

Scarce and in high demand, sunscreen products remain out of reach for many Zimbabweans living with albinism, who number an estimated 70,000. While officials admit that there is a need to improve access to skin care products for this population, an absence of policy makes sunscreen hard to get and distribute, advocates say. But for some, the campaign marks progress.

Most sunscreen products that are available in Zimbabwe are imported from South Africa and have steep import duties tied to them. Retailers sell lotion at high prices, too: It costs anywhere between $22 and $35 for a 250-milliliter (8-ounce) bottle of sunscreen lotion in Harare shops.

A significant portion of people living with albinism in the country are therefore unable to afford sunscreen, says Mercy Maunganidze, ZIMAS director. For years, her organization has been lobbying the government to reduce the price of sunscreen lotions and even make them free in health facilities, she says.

But the process has been slow. There are no government frameworks that regulate procurement and pricing of sunscreen products to assist people such as the Nyamapfeka siblings.

Still, ZIMAS has been distributing sunscreen lotion to those living with albinism, Maunganidze says, a group of people who are 1,000 times more likely to develop skin cancer than those who do not have the genetic condition. ZIMAS gets the lotions from importers. Other organizations are doing the same and handing out the products free of charge.

Due to a lack of funding, ZIMAS donations can be as infrequent as two to three years apart, Maunganidze says.

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Perrence Nyamapfeka, Terrence Nyamapfeka, Owen Nyamapfeka, and (foreground) Lois Nyamapfeka stand outside their home in Hatcliffe Extension, Zimbabwe. When outdoors, the children stay in shaded areas.

Kudzai Mazvarirwofa, GPJ Zimbabwe

Nyamapfeka’s family was one of those receiving sunscreen from ZIMAS. Before the Beyond This Skin campaign kicked off in October, the family would get two 100-milliliter (3.38-ounce) bottles.

The donations from ZIMAS were not sufficient for four children, says Nyamapfeka, who has no formal job.

“I really wish I could work and buy these lotions for my children, but all I do is make pots out of aluminum scraps and sell them for a dollar,” he says. “Whatever money I get goes to feeding my family.”

Recently, sunscreen rations in the Nyamapfeka household have doubled, thanks to the Beyond This Skin campaign. They now receive two 200-milliliter (6.76-ounce) bottles.

It costs anywhere between $22 and $35 for a 250-milliliter bottle of sunscreen lotion in Harare shops.

More than 2,000 sun protection products including lotion and lip balms have been distributed within communities in Harare, Mashonaland West and Mashonaland East, three of the country’s 10 provinces, says Chiedza Mupfumira, Zimplats’ corporate communications manager. The campaign has cost $350,000, and some 500 people have received hats, too, he adds. Zimplats plans to target more people.

“Chitungwiza South Med Hospital, to date, has been able to perform skin-cancer operations on 13 patients in a phased approached, which expects to provide assistance to 100 patients,” Mupfumira says.

The campaign, at its nine-month mark, has had more impact than ZIMAS could have had in a decade, in terms of the number of people receiving support, Maunganidze says. But challenges persist, especially in the capital, Harare, which has the country’s second-largest population of people living with albinism, she says. In Harare, ZIMAS has more than 13,000 registered members who are receiving campaign donations but not on a monthly basis.

“Last month, I received lotions, but they have since finished, and this month nothing,” Nyamapfeka says. The family must manage with what they receive, just as they were doing before the campaign, because nothing is guaranteed, he says, until the government puts a policy in place.

Kudzai Mazvarirwofa, GPJ, translated some interviews from Shona.