Evelina Tshabalala, Kenneth Methula, Masibulele Gcabo and Willie Engelbrecht all completed the 89km Comrades on Sunday 30 May 2010.

The four Positive Heroes, who are all living with HIV, took their ARVs whilst running what is known as one of the world’s toughest ultra-marathons. This toughest of tough marathons is hard enough but for two of our runners the feat was even more extra-ordinary. A year ago Kenneth was lying in hospital battling a severe case of TB whilst Masibulele overcame a serious leg injury suffered in 2009.

Willie led the team home in 9 hours 8 minutes whilst Evie slashed her time by a whopping 34 minutes coming in at 9 hours 26 minutes. The goal-orintated, positive thinking as well as exercise and healthy eating that are the basis for completing such a feat also underlie the Positive Heroes ethos of facing challenges with a solution-focused approach.

We congratulate Evie, Kenneth, Masibulele, Willie and all those who took part in this truly awesome sporting event.

In South Africa there are almost 300,000 pregnancies per year involving HIV-positive mums-to-be, according to the latest antenatal survey in 2007. With numbers like these, it might be surprising that Fikile Mabuza* thought she would be the only HIV-positive pregnant woman at the clinic.

This is because of misconceptions about HIV and pregnancy. “Some people don’t have information and they talk out of the blue, just to talk,” she said. “Sometimes I feel like I could punch them because they talk and they don’t know – they just criticise HIV. Yes, HIV … has killed people, but it’s manageable.”

It’s like people think, ‘How can she be pregnant when she knows she is HIV positive? Mabuza eventually lost her baby in the seventh month of her pregnancy, but said she and her fiancée – who is HIV-negative – plan to try again in 2010.

Seven years ago, Priscilla Khauoe found herself in the same situation and what she learned then as an HIV-positive pregnant woman propelled her into activism. She now works as a testing counsellor for Persevere until Something Happens (PUSH), an HIV/AIDS organisation in Johannesburg, South Africa.

Khauoe said she still sees the same negative attitudes about positive motherhood as she did when she was pregnant with her son. “If I am in a relationship and I tell a person I’m HIV-positive, the first thing the person says is: ‘What happens when we get married? What are we going to do? I want children.’” she said.

“It’s like people think, ‘How can she be pregnant when she knows she is HIV-positive?’ She said stigma still has a lot to do with how HIV is perceived and misunderstood.

“We think that when you have HIV, you are sick and you are dying,” she said. “A person thinks that they can’t have a baby because the baby will be sick; it will die. They think life has stopped because they are HIV-positive.”

Rakgadi Mohlahlane, programme manager at the Centre for the Study of AIDS and a researcher investigating stigma, warned that it was a complex issue. “Stigma happens for a variety of reasons, and it’s not based in any reality – it’s based on people’s perceptions,” she told IRIN/PlusNews.

“Those perceptions started from an attempt to moralise the whole HIV epidemic, and because of those perceptions some people feel – on a ‘moral ground’ – that a woman who behaves a certain way deserves to have HIV, or doesn’t deserve to have a child.”

Nomfundo Eland, national programme manager for women’s rights at Treatment Action Campaign (TAC), an AIDS lobby group, admitted that pregnant women living with the virus were still treated unfairly. “Basically, people think HIV-positive women shouldn’t be having unsafe sex, which is why they are pregnant.”

The organisation works with women to “try to explain about issues of reproductive rights and that, in most cases, pregnancies should be about planning,” said Eland.

“We also talk about options, but many of those options – like artificial insemination – aren’t available to most women because they are very expensive. People need to be aware that women who are HIV-positive are also women, and have to enjoy their reproductive rights.”

*not her real name

For the full story in the IRIN article SOUTHERN AFRICA: HIV pregnancy, stigma and ignorance please click here.

“Stigma remains the single most important barrier to public action. It is a main reason why too many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment if so. It helps make AIDS the silent killer, because people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason why the AIDS epidemic continues to devastate societies around the world…

…We can fight stigma. Enlightened laws and policies are key. But it begins with openness, the courage to speak out. Schools should teach respect and understanding. Religious leaders should preach tolerance. The media should condemn prejudice and use its influence to advance social change, from securing legal protections to ensuring access to health care.” Ban Ki-moon, Secretary-General of the United Nations

If you would like to know more about stigma and it’s effects please visit AVERT’s page on Stigma, Discrimination and attitudes to HIV & AIDS

South African President Jacob Zuma has implored the people of South Africa to change their attitudes about the epidemic and the stigma attached to HIV. Vuyiseka Dubula, General Secretary of the Treatment Action Campaign and Positive Hero joined President Jacob Zuma launch the new testing campaign when President Zuma took leadership on the issue of stigma saying:

“There are some challenges we must deal with around HIV and AIDS which contribute to the delay in stemming the tide of this epidemic. One of these is attitudes and the stigma attached to the disease. We have to work harder, together, to fight the perceptions and the stigma. We have to make all South Africans understand that people living with HIV have not committed any crime, and that they have rights like any other citizen. We have to expand the knowledge and understanding of the epidemic to protect affected individuals and families. The stigma arises from fear, and fear from ignorance. Let us fight ignorance. The greatest benefit from the HIV testing campaign should be the education of our people and the promotion of the rights to human dignity and privacy of those living with HIV“.

The President went on to say: “Therefore as we encourage all our people to test and know their status today, we must emphasise certain basic and fundamental messages. The HIV test is confidential. By promoting the testing campaign publicly, we are not putting pressure on people to undertake public tests. The decision is made by an individual alone or as people in a relationship to take the tests, after counselling and being provided with information and implications. People do not have to take a public test or release their results if they do not want to do so. Everything will be done confidentially. Everybody’s privacy and dignity must be respected by health professionals and the public in general. We must also respect the HIV status of all South Africans, whether positive or negative. Let us not make those who test HIV positive to live in shame and fear. We must support each other emotionally during that difficult time, and also materially where possible”.

Positive Heroes applauds President Zuma, the South African Ministry of Health and the South African National AIDS Council (SANAC) for launching a campaign today to test 15 million South Africans by 2011 (up from 2.5million in 2009).

To find a public or private ARV site please go to the Treatment Action Campaign’s Antiretroviral Sites page or call the National AIDS Helpline on 0800 012 322.

Dr Reon van Dyk, Positive Heroes CEO said: “Let’s take part, help to normalise having an HIV test and encourage all South Africans to know and manage their status”.

Universal Themes of Stigma from the Stamp Out Stigma website:

– People are largely unaware that their attitudes and actions are stigmatising
– Language is central to how stigma is expressed
– Knowledge and fear interact in unexpected ways that allow stigma and discrimination to persist
– Sex, morality, shame, and blame are closely related to HIV-related stigma
– Widespread care and support for People Living with HIV (PLHIV) co-exists with stigma and discrimination

A general recognition now exists that when human rights are promoted and protected and when stigma and discrimination are reduced, fewer people become infected and those living with HIV and their families are better able to cope with the disease. UNAIDS (2000) maintains that stigma and discrimination are interrelated, reinforcing and legitimising each other and that ’stigma lies at the root of discriminatory actions, leading people to engage in actions or omissions that harm or deny services or entitlements to others’.

Discrimination is a violation of human rights. According to UNAIDS (2000), the principle of non-discrimination, based on recognition of the equality of all people, is enshrined in the Universal Declaration of Human Rights and other human rights instruments and should always be interpreted to include discrimination on the basis of actual or presumed HIV-positive status which is prohibited by existing human rights standards.

“I LOOKED AT THE MOUNTAIN AND I THOUGHT: I AM NOT GOING TO WALK” SO I TOLD MY HEAD TO RUN.”

And he did.  Willie Engelbrecht ran the whole way up Constantia mountain – and then all the way back down the other side to complete the 56km Two Oceans Ultra Marathon in 5 hours and 19 minutes.   He was followed by an eversmiling Evelina Tshabalala – cheered into the stadium by her fans,  and a few minutes later by Masibulele Gcabo, earphones in, music playing and as chilled out as ever.

Last in was Kenneth Methula.  Who had almost given me a heart-attack as I had expected him in first.  Seems our man from KZN had spent two hours in a medical tent – with the Doctors instructing him not to run.  ”But a little pain is not so big.  And I promised myself and Positive Heroes I would finish.  So here I am.”  And finish he did.

As did our newest Hero and member of the Marathon Team – Barbara Kingsley.  Who refused to head home after finishing her 26km run in just over two hours.  Nope – Barbara and her Aunt Jenny Peers sat at the finish line – cheering Barbara’s team mates in.

What a team:  5 incredible runners, Nike who paced them every step of the way in the form of trainers, shirts, hats, socks, gloves – the works, Southern Suns Hotels who provided a place to rest and recover, and Discovery who helped power the team with a donation.  Justin Badenhorst for the photos who climbs the hills with us – and took the photos.  To you all: Thanks, Nkosi, Dankie and Ngiyabonga ka khulu!

Next up for the team is the Comrades on May 30th and then Soweto on November 1st.  If you live in the neighbourhood – drop us a note – we’ll get you a t-shirt to support the team. If you can help us out with any sponsorship ideas, a rental car or some fun ideas – let us know.

The team meet Cape Town’s Mayor: Dan Plato on Signal Hill (Left to Right: Barbara, Evie, Alderman Dan Plato, Masibulele, Kenneth and Willie)

Thanks to Eulogi Reader at MC for the support.  Click on this link to read Faghmeda’s Story    reallives_april

Thanks to Move! team, Siphume Nene and Standard Bank.