Albinism, Science, Myths & an Innovative Solution to Skin Cancers Scare

By Learnmore Nyoni

“My greatest fear is getting skin cancer. I have seen many people that had small skin blisters from sun exposure and over time, those blisters developing into cancer. Some have unfortunately succumbed to the cancers,” said Skin Care Trust Director Susan Takaidza in an interview.

Susan Takaidza is a health professional with albinism who lives in Zimbabwe’s oldest city of Masvingo.

Her fear is not unique, but resonates with the feelings of almost 10 000 persons with albinism in Zimbabwe.

Albinism refers to a group of genetic conditions characterised by reduced melanin no melanin at all. Melanin is the pigment that colours skin, hair and eyes. In most cases, this affects eyesight, hair and skin colour.

Lack of melanin in individuals with albinism puts them at a higher risk of skin cancers from sun exposure. Skin cancers are the leading cause of death amoung individuals with albinism in Africa. Hence the growing calls to make sun protection solutions accessible free of charge to persons with albinism.

UN estimates indicate that one in every 1 000 people have albinism in select populations of Zimbabwe and in other specific ethnic groups of Southern Africa.

How accessible are sun protection products to persons with albinism in Zimbabwe?

According to the 2022 population census, there are 9,754 people with albinism in Zimbabwe.

 Many of them live in rural and marginalised communities where they grapple with stigma, discrimination, unemployment, food insecurity and poor access to education.

These factors hinder their access to their skin protection products, hence their increased susceptibility to skin cancers.

A recent study conducted by the Zimbabwe Albino Association found out that 90 percent of people with albinism in rural areas live below the poverty line. Only 1 in 10 of them have access to sunscreen lotions.

“Life-long skin protection against sun’s exposure is a need for persons with albinism and governments need to ensure free access to these lifesaving solutions.

“The Zimbabwe Revenue Authority (ZIMRA) charges duty when individuals and other smaller organisations registered as trusts import sunscreen lotions into the country,” said Noble Hands Trust Vice Chairperson Marvellous Tshuma.

Noble Hands Trust Vice Chairperson: Marvellous Tshuma

“Currently in Zimbabwe, even before the (sunscreen) lotions were removed from the essential drug list we didn’t see the difference. ZIMRA was charging their duty but this time we are rallying behind the petition put by Africa Albinism Network which is aimed at pressuring and registering our discontent and outcry on the recent removal of sunscreen from the essential medicines list.

“It’s an assault on our human rights as people with albinism. Going forward as organisations working on albinism we are also coming together to pressure our government to look into our plight as persons with albinism in Zimbabwe,” she said.

The government of Zimbabwe needs to add no more than US$2 million to its annual budget to ensure that its population of persons with albinism access these essential lotions that protect them against life threatening cancers.

Watch as Albino Trust of Zimbabwe Founder & Executive Director Bruce Nyoni explains the importance of sun-protection to persons with albinism.

“Right now if you import your sunscreen lotions despite visibly being seen as a person with albinism, ZIMRA will charge their customs duty regardless.

“My rallying point is we need to see the World Health Organisation reinstating the sunscreen lotions on the essential medicines list and ensure that just like condoms, ARVs and other contraceptives, sun lotions are available to us for free at clinic level,” said Noble Hands Trust Vice Chairperson Marvellous Tshuma.

How the skin naturally protects itself against the sun’s radiation?

The human skin is repeatedly exposed to environmental influences that affect the function and at times the survival of some cells. The skin has natural mechanisms to protect itself against such influences.

Scientists say that the sun’s ultraviolet radiation is the major environmental factor that affects the skin, leading in some cases to the development of skin tumours and cancers like basal cell carcinoma, squamous cell carcinoma and malignant melanoma.

The human body uses melanisation and keratanisation to protect itself from harmful sun radiation.

Melanin (the skin’s pigmentation) through a process known as melanisation, becomes an ultraviolet absorbent and has anti-oxidant properties. Melanisation is believed to be the most important protective factor against the sun’s radiation.

Unfortunately, melanin is the element that is lacking in the skin, hair and eyes of persons with albinism, hence their susceptibility to skin cancers.

The second form of natural protection against sun damage is keratanisation.

keratanisation is a natural process that occurs in the outer layer of the skin (epidermis),that involves the transformation of living cells into tough, water-resistant, and non-living cells filled with a protein called keratin. During this process, the skin thickens to protect itself from harmful environmental factors such as the sun’s radiation.

In people with albinism, keratanisation is seen by an evident hardening of the skin.

Local solution to skin cancers in people with albinism

“Albinism was first declared a medical condition in 1908 and ever since, there has never been a product to deal specifically with issues that affect persons with albinism,” said Dr Joey Chifamba, nano-dermaceuticals researcher.

Lack of melanin in persons with albinism exposes them to actinic damage also referred to as solar damage. Most sunscreen lotions available on the market do not prevent all the effects of actinic damage in persons with albinism.

“While sunscreen lotions provide a level of protection against sun protection, they do not protect against other effects of actinic damage such as inflammation, premature aging, wrinkles, sun-burn, skin thickening (keratanisation) and fungal infections,” Dr Joey Chifamba.

Nano-dermaceuticals Researcher: Dr Joey Chifamba

In response to this gap, ADRIC, a start-up company of the University Zimbabwe produced sola-guard, a range of products that fight against actinic (sun-induced) damage to the skin. These products do not only have sun-blocking properties but also has an anti-bacterial and anti-fungal effect.

Sola-guard products have been available on the market for over two years now.

Sola-guard range of products that protects persons with albinism against solar damage

ADRIC is producing various creams, gels, balms and lotions to cater for various albinistic skin types.

With support from corporates like Netone, Airports Company of Zimbabwe, Tongaat Hullets and other church organisations, sola-guard is accessible free-of-charge to no less than 2000 members of the Albino Charity Organization of Zimbabwe (ALCOZ).

“We work primarily with members of ALCOZ because we want to know who exactly is using our products, for us to follow up on the users and also obtain feedback.

“Our wish is for all persons with albinism to have actinic damage protection and not just sunscreen protection,” he added.

Harmful cultural norms, myths and superstition

Further to the challenges brought about by low melanin levels, individuals with albinism also face a host of problems due to social myths and beliefs grounded in superstition. These harmful social norms and beliefs prompt social exclusion, violence and abuse.

In the past decade, there have been hundreds of reported cases of violence and killings of individuals with albinism in 28 countries in Sub-Saharan Africa, the UN reports.

Watch as Skin Care Trust Director Susan Takaidza describes some of the social practices affecting persons with albinism in Zimbabwe

As a countermeasure to human rights abuses against persons with albinism, in 2013, the United Nations Human Rights Council adopted a resolution calling for the prevention of attacks and discrimination against persons with albinism.

Civic society organisations globally supported the call by the UN, increasing their advocacy efforts to ensure that persons with albinism have full enjoyment of their inalienable rights like all members of society.

Further, the African Commission on Human and People’s Rights endorsed the Regional Action Plan to End Attacks and Related Violations against Persons with Albinism in Africa (2017–2021).

Watch the video on how lack of access to sunscreen lotions is leading to avoidable deaths to people with albinism in Zimbabwe

A fortnight ago, on June 13, the world came together to commemorate the international albinism awareness day. This year marked its 10th anniversary and commemorations globally ran under the theme of ‘A Decade of Collective Progress’.

While considerable progress has been made to reduce deaths due to sun exposure, violence, stigma and discrimination, more can still be done to make lifesaving sun-protection solutions accessible to all persons with albinism free of charge.

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