People with albinism bemoan steep sunscreen prices

LIKE most 12-year-old girls of her age, Primrose Moyo — who has pale skin due to a pigment disorder that barely protects the skin from the sun’s radiation — used to enjoy playing outside with her friends even when the sun was blazing hot.

The bubbly Primrose, who is living with albinism, and her mates, would walk around their neighbourhood in Bulawayo’s New Magwegwe suburb for hours, visiting their friends and playing all sorts of games that made them happy.

However, the minor’s heart was broken when her mother, Rudo Moyo, recently told her she could no longer afford to buy her sunscreen lotions that had allowed her to play in the scotching heat without any problems.

People with albinism need sunscreens with a high sun protecting factor (SPF 50+ being the best) to protect their skins, as they are at high risk of having skin cancer, which is arguably the biggest cause of death among people living with albinism. 
They face great difficulties because of the high intensity of the sun’s radiation.
Albinism is a rare, non-contagious, genetically inherited condition which occurs worldwide regardless of ethnicity or gender. 
It most commonly results in the lack of melanin pigment in the hair, skin, and eyes, causing vulnerability to sun exposure.

It’s a disorder in which the individual suffers from a complete or partial lack of the pigment in the skin. 
When exposed to sunlight, the skin of a person with albinism does not acquire a tan. 
Instead, it remains light and there is a greater risk of skin cancer.
The estimated life expectancy for people with albinism is said to be 45 years. For Primrose, she always knew she was different from other children but she least expected that one day her uniqueness would be her worst nightmare.
Because of the failure by her mother to provide all the essentials, Primrose can no longer go to school and play outside as often as she did.

“I have always wanted my daughter to live a normal life but lately things have spiralled out of control. I can no longer afford to buy her the lotion that she used to apply because it’s very expensive.
“Previously some of our relatives used to help me take care of her needs but now their plates are also full. As you can see the economy is in bad shape, so everyone is struggling to make ends meet,” Rudo said.

With the deteriorating economic situation in the country, life has been hard for Primrose’s mum, who sometimes has to go door to door looking for part-time jobs to take care of her daughter.
Her husband, who was also the breadwinner, died a couple of years ago. Most people living with albinism report suffering from prejudice and are often rejected by their families.
“Taking care of Primrose has always been expensive but these days the situation has worsened because the people that used to give me part-time work no longer have the money to offer me anything.

“What I can do for my daughter now is to ensure that I keep her at home most of the times and ensure that she is not exposed to the heat outside,” Rudo said.

Most people living with albinism from poor backgrounds cannot afford to take care of themselves as the sunscreens now cost between $50 and $80 for small bottles. 
This is much too expensive for most albinos, especially as a tube only lasts a week with intensive usage.
Zimbabwe Albino Association (Zimas) director Mercy Maunganidze-Chimhanga said government needs to intervene in their situation by ensuring that sunscreens are put on the country’s list of essential drugs.

“Bottles between 125 and 200 ml of the sunscreen that we use cost between $50 and $80 and adults like me require almost four bottles per month. It’s been difficult as most of us cannot afford. On top of that, we also need a special lip balm with SPF known as Lobello which also costs around $30.
“We also need hats, long sleeved clothes and soap for our skins. Government has admitted that albinism is a disability but we do not get the grants that disabled people are entitled to. We also have to benefit from those grants,” she said.
Maunganidze-Chimhanga told the Daily News on Sunday that Zimas only gets $400 per year from government and it’s not enough to cover everyone in the country.

While Zimas has a registered membership of approximately 13 000, national statistics show that there are about 70 000 people living with albinism in Zimbabwe.
The Zimas director has pleaded with government to prioritise the welfare of people living with albinism pointing out that they are still subjected to discrimination even when they are looking for jobs.
“The stigma against people with albinism is still there even when some of us are looking for employment they are still being looked down upon. Women and children however are suffering the most and they are even exposed to HIV because of the stigma,” she said.

Maunganidze-Chimhanga said women are prone to contracting the virus due to myths that indulging in sexual intercourse with people living with albinism cures HIV.
Some of the girls living with albinism are being raped because of a belief they offer a cure for Aids. 
Around 1.2 million Zimbabweans among a population of 13 million have the HIV virus that leads to Aids. Social stigma prevented many girls from reporting rape, making it difficult to say how many albinos had been sexually abused.

“You can imagine how painful it is to have albinism and HIV at the same time. When you get a sore it also takes a long time to heal,” she reiterated.
People with albinism have been facing discrimination in Africa dating back to centuries. 
Although efforts have been made to curb this, the trend has continued.

In other parts of Africa, people with albinism have been killed for black magic purposes, with hunters killing their victims and harvesting their blood, hair, genitals and other body parts for potions that witchdoctors say bring luck in love, life and business.


 

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