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Albino community under siege

By Phyllis Mbanje

THIRTY-SIX-YEAR-OLD Simbarashe Nkunando is battling cancer of the eye. He has lost his right eye to the virulent disease and in its place a huge growth has developed and hangs over his nose.

His cancer started in 2019 and could not get medical assistance, as the charges were beyond his reach. The long waiting list for operations in public hospitals compounded his woes.

Nkunando is one of the many people living with albinism who are afflicted by various cancers.

Albinism makes them more susceptible to cancers.

The situation for people with albinism in Zimbabwe has become dire  with many dying from skin cancer while there are also disturbing reports that women were being subjected to ritualistic sexual abuse in their communities.

The worst affected are those who live in the rural areas who are facing a litany of challenges, including lack of access  to health services and can’t afford the cost of special sun screen lotions required for their skin pigmentation.

The sun screen lotions help in minimising  exposure to the UV sun rays that damage skin cell development, causes the skin to crack, age and eventually causes  cancer.

Because of the economic meltdown, most people living with albinism are not employed.

They survive on vending and other informal work but this has since become a huge problem due to the COVID-19  pandemic.

“Poor access to the primary and basic needs for people with albinism, that is sun screen lotions and protective clothing have left many in harm’s way due to cancer,” said executive director and founder of Noble Hands Willard Musiyarira.

According to Musiyarira’s deputy, Marvellous Tshuma, popularly known as Queen of BaTonga, many people with albinism are dying silently.

“Where is our national leadership and our government given the challenges the people with albinism are facing?

“People with albinism are dying like paupers in the rural areas, they cannot afford the cost that comes with treating cancer.”

Stigma and discrimination

Of concern also is stigma and discrimination, especially in the rural areas due to uncouth, outdated cultural beliefs which has led people living with albinism to be regarded as family liabilities or outcasts.

“Even when they get sick, we have discovered that families tend to shun them, this is why we even have resorted to renting a house in Harare to accommodate the patients with cancer comfortably away from the hostile families,” Musiyarira said.

In other counties like Malawi, Mozambique and the Democratic Republic of Congo, it is worse as albinos are hunted and killed for ritual purposes.

“Discrimination and scepticism around  albinism is starting at family level, going into the society,” Musiyarira said.

“There is social segregation at workplaces, schools and other circles of society. To add to that, women with albinism are being subjected to ritualistic sexual abuse in the communities and it is going unreported as in some parts of society it has been normalised,” he said.

Many people with albinism, especially in the rural areas also do not even have birth certificates and identity particulars  especially in Gokwe North and South where 60% of those with poor access to primary needs are not registered.

COVID-19 era

COVID-19 made things worse, for people with albinism who survive on informal businesses which were locked down and like everybody else, there was no source of income and access to lotions and other needs.

“Borders were closed. The affordable lotions come from South Africa and due to lack of supply, the prices were automatically raised from around US$8 to between US$15 to US$20  per tube which is only used for  a month,” Musiyarira explained.

Because of this, they were now recording a rise in new cases of skin cancer and more deaths. The sole cancer department at Parirenyatwa Group of Hospitals was closed.

So, through the sustainable empowerment programme, the organisation is  aiming to empower those living with albinism with sustainable empowerment projects, skills and businesses so as to cushion them from the economic maze.

“Most importantly, we aim to remove them from jobs that expose them to the sun and create avenues where they can work under shed in a bid to prevent the prevalence of skin cancer,” Musiyarira said.

In light of this, he said, Noble Hands is advocating for government  to provide lotions and protective clothing for free to the albino community.

“Given the demographics, one in 4 000 people in Zimbabwe has albinism and it is a manageable number if the State is willing to assist them. Most importantly, people with albinism in Zimbabwe must be empowered so as to reduce donor dependency and improving general livelihoods,” Musiyarira said.

He also said albinos require a balanced diet to improve their immune system.

“So there is need for us to have a clear policy framework to obligate the State to address the health needs. We need to push line ministries like health to work closely with the albinos and promote their health education on issues to do with cancer.”

To help push for this, the Albinism Konect programme has been set up and is going to change a lot of lives upon its completion in 2025.

The programme is aimed at bridging the gap between society and albinism, most importantly, it is  aimed at helping people with albinism through advocacy.

Its sustainable health support arm entails cancer treatment  to people with albinism.

  • Follow Phyllis on Twitter  @pmbanje

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