A NEW NORMAL

Stories From The Front Line

By Standing Voice

June 19^th, 2020

This month has seen celebrations around the world of International Albinism Awareness Day: a special observance launched five years ago by the UN to champion and commemorate people with albinism everywhere.

This year the world looks a lot different for people with albinism and indeed for everyone. The COVID-19 pandemic has brought the international community to its knees. Events are cancelled, schools closed, and health systems under unprecedented strain. Thousands of lives and millions more livelihoods have been lost in the fight to overcome COVID-19.

In the midst of this crisis, International Albinism Awareness Day is an opportunity to reflect on the current challenges facing people with albinism and also to celebrate their strength, which endures and inspires even in these dark times. It is a moment to shine a light, too, on our frontline staff and partners, whose bravery and perseverance mean that people with albinism throughout Tanzania and Malawi are continuing to access the support they need.

Although physically apart as we continue to navigate this new normal, we are bound together across the world in celebration of International Albinism Awareness Day.

Scroll down to hear our voices from the front line:

“During this period of crisis, it is important to remember how COVID-19 may exacerbate existing inequalities already experienced by people with albinism. Right now people with albinism are doubly vulnerable, not only because of the virus, but also because of the underlying barriers that restrict their access to services and prevent their participation in society.”

Bonface Massah - Country Director, Standing Voice Malawi

“As a medical practitioner, I can see that everyone is full of fear. Lifestyles have changed: no shaking hands, no hugging, no unnecessary interactions. For me, I must maintain the courage to continue serving my patients. We have to keep saving lives.”

Dr. Venance Nyanda - Dermatologist, Tanzania

There are fears that COVID-19 may intensify the discrimination faced by people with albinism. In the absence of accurate information about COVID-19, communities may find their own explanations for the virus. Already we have received disturbing reports of people with albinism being labelled ‘corona’, blamed for spreading a ‘foreign’ virus that would otherwise not affect black people.

“I feel more and more excluded by my family and community. They think, because of my albinism, that I look like a white person and must therefore be infected with COVID-19.”

Agnes - Beneficiary, Tanzania

“My biggest fear is what will happen when the virus hits small rural communities. There is a risk that COVID-19 may reinforce existing myths and prejudices around albinism. If people with albinism catch it, the stigma and discrimination they experience could be doubled.”

Alex Magaga - Operations Manager, Tanzania

“The fear and anxiety is real. Some of the families here feel hopeless, with no access to accurate information about the virus.”

Fr Steven - Skin Cancer Prevention Programme Partner, Benga Parish, Malawi

Across the world, many people have been unable to attend work for fear of catching or spreading COVID-19. But for many people with albinism in Tanzania and Malawi, no work means no food or funds to support their families.

“In our culture, social distancing, wearing protective clothing and staying indoors is very difficult. My father can’t afford to buy masks for my whole family and staying at home is challenging because we depend on a small scale agriculture business. It’s harvesting season at the moment, which forces my father out of the house to the market to ensure the family can afford our essential needs. But we don’t know how many people our father is interacting with who might be infected. This is a real problem for poor families like ours.”

Elizabeth - Beneficiary, Tanzania

“My daughter has to stay at home now because of her school’s closure. We have no access to the internet or help from teachers. The virus is making our lives very difficult and has affected my children’s education. My biggest concern is that my daughter was supposed to sit her national exams for Standard 8, but due to school closures, she no longer can. Our money has been wasted, and I can’t imagine how we will be able to pay her fees when schools reopen.”

Mrs Mleme - Parent of child with albinism, Malawi

Access to remote health services and provisions like sunscreen and protective clothing is vital for people with albinism now that large-scale clinics and gatherings have been restricted in Tanzania and Malawi.

Standing Voice has responded to the ongoing pandemic by distributing health packages directly to patients. These include sunscreen, protective masks, sanitary and cleaning products, and information about albinism, skin cancer, and COVID-19. We have also introduced tele-dermatology, so that beneficiaries and clinicians can conduct consultations over the phone. People with albinism in our tailoring and soap-making groups have meanwhile been commissioned to create the masks and soap that are included in the packages.

“The care packages we are distributing incorporate advice for preventing the infection and transmission of COVID-19, as well as serving as reminders of the importance of good practice in skin cancer prevention and surveillance during this difficult time. The packages also include the number to a hotline which will be available for people with albinism, their families, and local clinicians who might be concerned about new cancers or progression of an existing lesion. This way, we hope delays in confirming diagnoses and accessing treatments will be minimised.”

Dr Mark Wheeler and Carol O’Dea - Skin Cancer Prevention Team, Ireland

“Generally, the restrictions placed on clinics have created a big problem. We are missing opportunities to interact with people with albinism, and to educate communities about their condition.”

Lexxa Zakaliya - District Secretary (Association of Persons with Albinism in Malawi)

“Most health providers at hospitals, health centres, and dispensaries are not knowledgeable about COVID-19. I am worried if me or my family gets sick and goes to hospital, the doctors and nurses wouldn’t know how to treat us correctly.”

Vedastus Wilfred - person with albinism, Tanzania

But it is the strength and determination of our beneficiaries on the front lines, their feelings of hope for the future, that has shone through.

“I live happily and collaboratively with the people around me. This crisis is bringing us closer together, despite the threat to our lives.”

Samson - Beneficiary, Tanzania

“The sense of community is strong in my village. I hope the current challenges will unite us more than ever before. We are helping ourselves and each other to fight this pandemic.”