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Hunted, haunted by cancer: people with albinism search for respite

By Richard Chirombo:

FIGHTING FOR PEOPLE WITH ALBINISM— A girl carries a placard in Chiradzulu District on Thursday

Birth, by its very nature, is supposed to be celebration time, replete with cries of laughter and endless smiles.

Not for people with albinism in Malawi though, as even a week-long child with albinism is dwarfed by problems such as needless attacks on their person from people who should understand better.

“It is impossible to live freely under such circumstances,” says Association of Persons with Albinism (Apam) National Coordinator Overstone Kondowe.

It sounds ironical that, in a country that is supposedly free, some citizens should be moving while watching over their backs. In fact, when democracy is supposed to be in full flower, it is terror that seems to be.

The glamour of democracy is tempered by fear, says Kondowe, calling for an end to attacks on persons with albinism.

That is why, Kondowe says, Apam has been banking on the National Plan of Action on Persons with Albinism, which requires funds amounting to K3.1 billion for implementation.

Making resources available would help councils and the government know where persons with albinism live in order to provide necessary services, including arranging for proper security measures, he enthuses.

However, the figure of K3.1 billion was arrived at before the Ministry of Social Welfare asked the National Statistical Office (NSO) to incorporate data on people with albinism, for the first time in the country’s history.

A government paper, asking NSO to do just that, was publicised in March this year, and reads:

“We have also engaged the National Statistical Office for inclusion of issues of disability in the 2018 Population and Housing Census, as it is expected that the final report will have disaggregated data of persons with disabilities. Through this initiative, the population of persons with albinism will be known.”

Today, Kondowe and those interested in promoting the rights of people with albinism are demanding more resources— understandably so— after the 2018 Malawi Housing and Population Census (MHPC) comprehensive report indicates that people, including members of Apam, were, all along, misled on the number of people with albinism in the country.

Before the 2018 MHPC, Apam had been saying Malawi had about 15,000 people with albinism.

However, NSO’s comprehensive report indicates that Malawi has 134,636 people with albinism, representing 0.8 percent of the population.

Kondowe, who is now Chairperson for the African Union for Persons with Albinism, has acknowledged that the number of people with albinism was underestimated.

“This implies that we were under-reporting,” Kondowe says.

He adds that the latest development means there is more work to do to reach out to people with albinism in the country.

“This calls for more advocacy interventions and projects to reach out to the population of PWA [persons with albinism]. Credit to NSO and the United Nations Development Programme for the support to include questions of albinism [in the census],” he says.

Such efforts will go a long way in ensuring that cases of attacks are reduced or eliminated altogether.

Since 2014, there have been about 153 attacks on people with albinism, out of which 25 were fatal.

In addition, over 11 people with albinism have been reported missing.

Just when people thought people with albinism were facing one enemy, it turns out that there is another enemy lurking in the background: cancer.

Apam records indicate that four people with albinism are dying of cancer in the country every year.

“This is because of our skin condition,” Kondowe says.

JOINING HANDS— Simbota (left) and Navitcha (right)

Apam newly elected president, Ian Simbota, says this means there is need for immediate action.

“We are all now talking about the killing and abduction of people with albinism but there are so many challenges people with albinism are facing in the country and cancer is one of them.

“Our hospitals are overwhelmed so that we are sent back many times before we are treated and, by then, the cancer is at an advanced stage,” he says.

In fact, Simbota wants the country to prioritise prevention efforts instead of spending money on treatment.

“I mean, the country should establish a factory that can be producing sunscreen lotion for it to be easily found in the country,” he says.

However, Gender, Children, Disability and Social Welfare Minister, Mary Navitcha, says the government is committed to promoting the welfare of people with albinism.

“The first thing we have to do is to demystify issues surrounding albinism in the country.

“On the issue of making sunscreen lotion available, we are doing all we can to ensure that sunscreen is easily available across the country to people with albinism.

“Again, my ministry is talking with officials in the Ministry of Lands for us to continue constructing strong houses for disadvantaged people with albinism,” she says.

But she should not think her plate is full; people with albinism are also demanding a report after President Peter Mutharika instituted a commission of inquiry to investigate attacks on people with albinism.

During International Albinism Day commemorations this year, held under the theme ‘Still Standing Strong’, Kondowe bemoaned delays in releasing findings of the commission.

“The delay raises a lot of questions because each and every commission of inquiry is given a deadline,” Kondowe says.

And, so, people with albinism wait and wait, one only hopes not forever.

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