Celebrate the people making the most of life with HIV

South Africa has a difficult relationship with HIV and AIDS. No longer a death sentence, a positive diagnosis still holds deep-seated fear and stigma. And although HIV doesn’t dominate the national conversation the way it did a decade ago, it remains an urgent issue that demands active intervention and attention.

Because although South Africa has made significant, encouraging progress in fighting HIV and AIDS, the scale of the crisis keeps growing. Our country is home to the largest treatment programme in the world. We also have the biggest epidemic on the planet. At a global scale, one in every five cases of HIV occurs in South Africa. The dimensions of the crisis are staggering, but HIV and AIDS are human issues – and it’s in the efforts of people working to educate and uplift others that we can turn for inspiration.

Advocacy and activism

It’s impossible to start a conversation about HIV and AIDS in South Africa without talking about AIDS denialism and its tragic toll on the country. In the early 2000s, hundreds of thousands of people died without being able to access antiretroviral drugs. That episode represents one of the lowest points in South Africa’s history: an entirely avoidable loss of life caused by stubbornness and arrogance.

As with so many times in our country’s story, activists held government to account. A movement spearheaded by a collection of unlikely heroes reached its zenith when Nelson Mandela pulled on a shirt with the words “HIV Positive” across the chest, in a show of solidarity with people living with the virus. Shortly after, antiretroviral drugs were made available for free – a moment that led to life expectancies in South Africa increasing by almost 10 years.

Speak up

While this is a remarkable turnaround, we can’t afford to be complacent about HIV and AIDS. For all of the good that has been achieved, over 7.5 million people in South Africa are estimated to be living with HIV. More than 13% of the population is positive, a figure that rises to 19% – close to one in five – for people between the ages of 15 and 49. In spite of this, HIV has fallen away as a national issue. For a crisis this severe, that’s a problem. Because although treatment options are effective, many South Africans don’t know their status or don’t take medication. As a result, the epidemic continues to grow.

How does this change? Loud, vocal, and uncompromising activism won the battle for free treatment. That same energy is what’s needed to revitalise the conversation and combat both the continued spread of HIV and people’s attitudes towards it. Because as much as the national trends and statistics are important, what matters is how HIV impacts people’s lives. It’s crucial that more South Africans understand what living with HIV means, and realise that a positive status doesn’t mean a compromised existence. Recognising how people are responding to HIV today is critical to reducing fear and breaking down stigma.

No reason for compromise

Thanks to advances in treatment and care, South Africans with HIV can live brave, vigorous existences. Evelina Tshabalala has shown the way. After an athletic career that saw her place 25th at the London Marathon, Tshabalala was diagnosed with HIV. Today she continues to run, pushing past the marathon distance to finish both the Comrades and Two Oceans ultra marathons while also climbing three of the world’s tallest mountain peaks.

Tshabalala isn’t the only athlete proving that HIV doesn’t have to mean the end of an active life. Barbara Kingsley was diagnosed with HIV in 2000, but refused treatment for eight years. Accepting antiretroviral drugs would mean acknowledging her positive status. Eventually the effects of the virus became too much and Kingsley started treatment. She started to regain her strength and took up running, completing a number of ultra marathons.

Much as Kingsley struggled to come to terms with having HIV, Charlie Jacobs lived in denial for years. Jacobs discovered his status by accident, and didn’t start treatment until he was close to death. Accepting medication helped him make peace with his new reality, and Jacobs became the first Mr Gay South Africa finalist to publicly announce his status in 2011 – an important moment in breaking down the stigma that continues to surround HIV in South Africa.

In a total contrast, Saidy Brown announced her status in the way most appropriate for South Africa’s next generation of activists: on Twitter. She told the world she was positive to reframe the effect of HIV on her life. Brown isn’t a victim, she’s an HIVictor who has embraced life and works tirelessly to educate and enlighten people about HIV.

Not everyone reacts the same way to having HIV. In addition to the physical consequences, it takes a serious emotional toll. But treatment is available and effective, and people who receive antiretroviral drugs live full, healthy lives. So while the epidemic in South Africa continues to grow, we need to recognise and share the stories of the people who are making the most of life with HIV. A diagnosis is not a death sentence. HIV is not a curse. Get tested, know your status, and encourage others to do the same. That’s the first step towards living up to the remarkable examples set by Brown, Jacobs, Kingsley, and Tshabalala.