World Aids Day: stigma still the biggest challenge in Zambia

http://www.theguardian.com/global-development/2014/dec/01/world-aids-day-stigma-zambia

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​Cleopus Chisanga was 18 when he tested HIV-positive and lost his father to a car crash and mother to a heart attack. He carried the extra burden of believing that the knowledge of his status had contributed to his mother’s death. Then he faced the prospect of stigmatisation from friends who would fear or ridicule him.

“People don’t know about HIV,” says Chisanga, who is now a 21-year-old student in Lusaka, Zambia. “Some laugh at you, some will be avoiding you and not talking to you. They think if you have it you ​will die today or tomorrow.”

Finally, Chisanga took the plunge. The first person he told was Brighton Kaoma, who had been at school with him in Kitwe, in the Copperbelt province. Kaoma recalls: “I supported him as a friend and encouraged him: this is not the end of the road. I’m not thinking this condition is a big thing. There are a lot of conditions, like diabetes. The biggest killer in Africa is malaria.”

The 26th World Aids Day ​is ​marked on Monday, yet in Africa, the fight against stigma goes right to the top. For an African politician who is HIV-positive to be open about their status is still seen as electoral suicide. Campaigners say a lack of prominent role models is hampering their efforts to change attitudes.

The first Zambian president, ​Kenneth Kaunda, and the first black South African president, Nelson Mandela, both broke a taboo by revealing that their sons had died from Aids, in 1986 and 2005 respectively. Fifteen years ago, South African judge Edwin Cameron announced that he is HIV-positive​, but such openness ​remains ​exceptional for an African public figure.

At the recent launch of his book, Justice: A Personal Account in Cape Town, Cameron told the audience: “I made that statement in April 1999 thinking that I’d be joined very soon by other public office bearers. I was a white person in an overwhelmingly black epidemic; I was a proudly gay man in an overwhelmingly heterosexual epidemic in our continent and country.

“I’m still the only person holding public office in the whole of this continent, in an epidemic of 30 to 40 million people, where cabinet ministers, possibly heads of state, have died from the disease and no one has spoken out about it. That’s the consequence of stigma.”

​Kaoma, 20, ​co-founded the Agents of Change Foundation ​this year in an attempt to tackle ignorance in Zambia, a profoundly Christian nation where abstinence is endorsed ​above condom use and subjects such as sex outside marriage or homosexuality are anathema to the church.

The university student says ​: “Stigma is the most pressing and vicious challenge most communities are facing. There’s a lot about prevention and treatment but there’s not much about changing attitudes and combating stigma.

“The reason people living with the condition don’t come out into the open is because of stigma. They’re afraid they’ll be laughed at. That’s why we had to come up with a platform for young people to talk about these things without shame.”

The foundation, run by volunteers trained by the UN Children’s Agency Unicef,​ aims to give young people skills in advocacy and communication, including radio journalism and photography, that will help raise awareness in their communities. On Saturday, a group of around 25 “champions of change” listened to a photographer from New York teach the basics about composition and resolution​.

Kaoma told the gathering: “Change doesn’t begin with people in big jackets with big bellies talking about ‘paradigm shifts’. Change begins with the family. If you look at the most prominent leaders in history, they came from similar backgrounds to you.”

But he also expressed a wish for the current crop of politicians to lead by example and not hide their HIV status. “They’re afraid of being a laughing stock among other politicians. Their opponents might use it to pull them down: ‘You can’t vote for someone with HIV because he’ll die in office.’ If public figures and affluent people opened up, it could be a source of inspiration for us as activists. They are the gatekeepers.”

Wearing a blue “HIV-positive” T-shirt, though he ​is negative, Kaoma explained: “You don’t have to have it in your blood to be positive. You can have it in your heart and your mind. I’m a hardcore Catholic but I’ve decided not to be indoctrinated into not talking about these things.”

Challenging stigma among the young

An estimated 1.1 million HIV infections among children under 15 have been averted worldwide, according to data released by Unicef last week, with new cases declining by more than 50% between 2005 and 2013. This is attributed to a huge expansion in services for the prevention of mother-to-child transmission of the virus.

​In Zambia, mother-to-child transmission has been slashed by 48% over the past decade, and in 2012, 86% of people aged above 15 in need of antiretroviral treatment received it, up from 24% in 2005. But the fight is far from over. It is estimated that 80,000-100,000 ​adolescents with HIV were in need of treatment in 2010. On average, three young people become infected every hour, and two of those are girls. A recent study found that nearly half of females started their first pregnancy before the age of 19.

Landry Tsague, Unicef’s HIV and Aids specialist for Zambia, says: “If you look at access to treatment, there has been tremendous progress. But we need to do more work. We need to bring champions out to talk about it openly. We need to do more at the community and school level to make sure those adolescents who are most vulnerable – girls – are put at the centre.”

​With the help of an NGO, the Anti-Aids Teachers’ Association of Zambia, young people ​share experiences and information, discuss topics such as future relationships and give talks at school assemblies to dispel myths that HIV can be spread through the air or by a handshake, or that Aids is a death sentence.

Busisiwe Mullya, 21, recalls that when she found out ​HIV-positive ​in 2003, she laughed. “I had learned about it at school,” she explains. “I knew what it was all about. I was immature so I laughed. I wasn’t scared a bit.

“But bad feelings started coming in later with self-stigma and discrimination from people and your friends no longer want to play with you. Your brother laughs at you. You begin to feel that you don’t deserve to be here. I was depressed for three months. I stopped eating, stopped taking the drugs. I thought about killing myself many times but I never had the courage.”

But the support of the Anti-Aids Teachers’ Association pulled her ​through. Mullya says: “Then I started looking at life differently with a perspective where anything is possible. We tell people it’s not the end of the world. When one door shuts, there will always be windows open to let in air so you don’t suffocate.”

She hopes to become a nurse and have a family one day. “That’s any woman’s dream and it’s mine. I will one day. All my friends I hang around with, I talk to freely. I don’t think it will be difficult to talk to my future husband about my status. It will be a walkover. If you’re going to come into my life then leave when you find out my status, better leave now.”

Christine Mwamba (not her real name), 19, is HIV-positive and has a boyfriend who is four years her senior. “When I told him, he cried. He said he would stay with me. It wasn’t difficult for him. I was really relieved because it was really hurting. I had to get some courage to do it.”

But many in the group have not disclosed their status to school friends because of the likely reaction. “Stigma is a problem because people are ignorant,” says Mwamba​.

​Another initiative, U-Report, provides confidential, individual and interactive HIV counselling free via SMS on mobile phones. A total of 1.8 million messages have been sent and received since it launched two years ago, with more than 71,000 users – who submit only their age, sex and location – registered and about 600 questions asked on a typical day. The number of U-Report counsellors has been expanded to 23 and the most common question put to them is: “What is HIV?”

Andre Lesa, the Unicef software developer and consultant behind U-Report, said: “The country has progressed a lot in terms of stigma. A few years ago, if someone with HIV came to your house, you would run away. But if more influential people were open about their status, it would help. The problem with people in power is that any kind of sickness is seen as a weakness.”