AIDSfree: Meet the young woman born HIV positive who helps others realise it's no longer a death sentence

Antoinette Jones was nine years old when her mother spoke to her in the kitchen to deliver two pieces of news: her parents were getting divorced and she had been born HIV positive. Her mother told her not to tell anyone.

“I just remember standing in the kitchen with my mother, and her having to tell me and seeing the look on her face,” she recalls. “It hurt me more to see her so upset. It was not that I had to be an adult, it’s that I had a secret that I had to carry. And because of stigma, I was told I couldn’t share the secret with anybody – it was a secret between myself and God.”

Fourteen years later, Jones works to help others with HIV, performing diagnostic tests and sharing the message that in 2018, a positive result need not be a death sentence. It is a highly charged moment for both the patient and the counsellor.

This work helps to overcome the stigma still associated with HIV in the minds of some, and which led her mother to think she was protecting her from the bigotry of others.

Sometimes, she says, people can “freak out” after receiving a positive test result. There was an occasion when a patient said they planned to kill themselves there and then, after hearing the news.

“I have to connect with them and let them take a couple of deep breaths, and let them come to some kind of peace,” she says.

“Sometimes, I have to tell my story – that I was born with HIV, and that I’m continuing with my life. How I’m continuing to fight HIV. I have to tell them HIV is no longer a death sentence and that the stigma is based on everything you were told in 1988, it’s not relevant today. It’s not based on fact.”

Jones, 23, is a so-called peer navigator with the Atlanta-based SisterLove, Inc, the oldest women-focused HIV and reproductive justice advocacy group in the southeastern US. It is one of the organisations supported by the Elton John AIDS Foundation, which The Independent and the Evening Standard are partnering with for this year’s Christmas charity appeal.

Sir Elton and Evgeny Lebedev, the owner of the newspapers, recently travelled to Atlanta to hear directly from people such as Jones. The city, where some of the world’s biggest companies including CNN, Coca Cola and FedEx are headquartered, has HIV infection rates comparable to a number of cities in southern Africa.

In the US today, a gay black man has a one in two chance of being diagnosed with HIV. In Atlanta, it is even worse – perhaps closer to 60 per cent. There are many reasons for this, but racism, homophobia, poverty and lack of education about HIV are central to allowing the virus to still be an epidemic for some communities, 31 years after the first antiretroviral drug, AZT, was licensed.

In a joint message, Sir Elton and Mr Lebedev said: “As we write, 37m people globally are living with HIV. Last year alone, 1.8m people contracted the virus and 940,000 died of an Aids-related illness. This need not happen.

“Today’s medicines not only enable those living with HIV to have full and fulfilling lives, but also ensure they cannot pass the virus on to others. The challenge is that too many people still do not realise they are at risk, are too afraid of the stigma or are denied the chance of taking an HIV test.”

Jones, who grew up in New York, was adopted by her aunt – the woman she calls and considers her mother – and her aunt’s husband. Jones was adopted along with all of her five brothers and sisters. One of Jones’s siblings is also HIV positive. After her parents divorced, she lost contact with some of her siblings, but earlier this year they reconnected on social media. She has also spoken to her biological mother.

SisterLove, Inc was formed in 1993 by Dázon Dixon Diallo to force the authorities to think about how Aids and HIV was affecting women. Diallo said there was a time officials did not even count infection rates among women. That changed in 1994. “We used to say women don’t get Aids, we just die from it,” she said.

The group, which has long burned a proudly feminist flame, occupies a bright and airy 117-year-old property in Adamsville, a traditionally African American neighbourhood in the west of Atlanta. Sunshine fills many of the high-ceilinged rooms.

Diallo says if people test positive, they are encouraged to start treatment as soon as possible and they help arrange it. Some start medication the very same day.

Most of the people they help are aged 16 to 25, says Jones. “Many of our clients know about us before they search for ‘free tests for sexually transmitted disease’, and we usually come up first.”

The group aims to treat everyone they encounter with compassion and understanding. “I try and make them feel very comfortable,” Jones says.

She says several things in society made her job harder – social media, which spreads false information about HIV “like a virus”, and some music that still uses language from the 1980s.

The biggest change needed, she says, was in schools. She said most of them still did not have a comprehensive sex education programme. Such an education would include LGBT+ people and those living with HIV. “I would change schools above all,” Jones adds.