Jane Mabasa was just 9 years old when she received what she was sure was a death sentence. She was sick, skinny and alone, having been separated from her ill mother and brought to an AIDS hospice in Johannesburg.
That was in 2006. At the time, South Africa's health system was in deep denial about the epidemic, and global AIDS fatalities were more than three times what they are today. Before she arrived at the Sparrow Village AIDS Hospice, more than 7,000 children had died, at the alarming rate of nine deaths each week.
She was sure she would soon join them. In fact, she said, she wanted to.
“I was very sick, to such an extent that, you know, the only thing that could give me peace was to die," said Mabasa, who is now 22, in treatment and healthy. "So when I was 14 years old, they started explaining to me that this is what’s happening, and you were born with this disease and you have to accept it, and you just have to live with it.”
And so, that's what she did.
Mabasa and the more than 180 residents of this small community are living proof that HIV no longer has to be a fatal diagnosis. Longevity, treatment and access to care have improved worldwide.
But this year, as World AIDS Day, the annual event to raise awareness of the global epidemic, turns 31, the United Nations Children’s Fund is warning that not all children are so lucky. In fact, the organization says, children are dying at the rate of 320 per day around the world — and about half of them are not in treatment. Those are alarming statistics, because with early intervention and treatment HIV-positive patients can live long, healthy lives.
Dr. Chewe Luo, who heads UNICEF's HIV/AIDS section, says health care providers need to treat HIV as a family matter.
“Children are falling behind the treatment drive globally," she told VOA. "And today we’re talking about 54% of children accessing treatment, about half of children are accessing treatment. Mortality in this age group is still high. ... But there’s also the aspect, that, if we are treating adults, we need to change the way we deliver services. For every adult that’s really accessing treatment, are we really asking about the children?”
And the fight is about more than just medicine, says Nompumelelo Madonsela, who works with young people in Johannesburg for a health care organization focused on HIV and AIDS. She spends her days tracking down youth who may have defaulted on their treatment. Even in 2019, she says, youth awareness is an issue.
“People think that 'once I get tested, I’ll know the status, and if I am positive, then I’ll just die,’" she said. "’So if I don’t know, I’m not going to die.' So I think it’s about, to them, what you don’t know won't kill you.
Twenty-year-old Johanna Mogotsi, who was born with the virus and abandoned as a baby at the hospice, only started treatment last year when her white-cell count dipped below a certain point. She says she's grateful to the doctors, nurses and social workers in her life. But, she says, the people who helped her most in her journey were her peers.
“They made me understand that it’s not the end of the world when you drink medication," she said. "They actually reminded me to take my pills every day. They told me everything about their experiences through HIV and AIDS. For me, it was nothing serious, because I thought it was something that can be cured, knowing that they are taking the medications and they’re still healthy.”
Mogotsi now dreams of becoming a nurse and Mabasa is on the board of the home she thought would be her last. Both know that mother-to-child transmission of the virus is now preventable and is a pillar of the strategy against pediatric HIV — and Mogotsi says she wants to have children someday.
Mabasa, however, says the psychological trauma of her own chronic illness makes her shun motherhood. But she loves kids, she says, and wishes she could go back and talk to her younger self. Instead, she shares her experiences with the children who continue to come through the doors of what was once a place of death. Since 2003, only one child has died of AIDS-related causes at Sparrow Village. The ones here now expect to live long, healthy lives.
“I’m proud of the 9-year-old Jane, because she had to accept that it is what it is," she said. "And I believe that I was born with dreams. I have my dreams, and I made sure that HIV and AIDS will not take those dreams away from me.”