HIV-Positive for 20-Plus Years: ‘Not Easy, but I’m One of the Lucky Ones’

Life-sustaining drugs are keeping people alive for decades, so conferees at the International AIDS Conference in Melbourne, Australia, delved into quality-of-life issues.

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Preparations get under way for the International AIDS Conference in Melbourne, Australia, on July 18, 2014.

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Steven Watiti was diagnosed with HIV in 1993. His wife was pregnant with their second child when she died of the disease, along with their baby. “That left me with my daughter who was 4,” said Watiti, a Ugandan physician. He spoke on a panel at the recent International AIDS Conference about people who have lived with HIV for 20 years or more. “I thought I’d be dead by the year 2000 and my daughter would join a long list of orphans in Uganda.”

Overcoming meningitis, tuberculosis and Kaposi’s sarcoma, Watiti held on until antiretroviral medication saved his life. He went back to work and now talks openly about his HIV status with his colleagues and patients. “I am 61,” he said to loud applause. “I have lived half of my life with HIV.”

Several other so-called 20-plus positives joined Watiti, including the moderator Suzette Moses-Burton, executive director of the Global Network of People Living With HIV. She was diagnosed with the virus in 1992 and was told she had two years to live. Twenty-two years later, she says, “I now face a whole host of new problems, and that’s what we’re here to talk about today.”

Long-term survival was a hot topic, and over the week, a number of panels examined issues related to aging with HIV.

Lwendo Mbulo has been living with the virus all 23 years of her life—though she didn’t find out until age 14 when her parents shared the news. “They told me, ‘You got it from us,’” said Mbulo, a member of a people with AIDS group in Zambia.

Though at first she felt like her dreams had been shattered, today medication, support and motherhood have turned her life around. “I can now stand up for my fellow youth to be a voice for them,” she says.

The experiences of the 20-plus positives differ from those of the newly infected, explained John Rock, a treatment advocate based in Australia. He was diagnosed with HIV 34 years ago.

“Many of us feel like we lost what could or should have been the best years of our life,” he says. “We missed our 30s, our major earning power. We do have good treatments, but I have to see a lot of doctors—six specialists.

“For people who were diagnosed in 2000 or after, it’s a very different situation,” Rock suggested, referring to anti-HIV medications, or ARVs. “They are more likely to have started ARVs before there was damage to the immune system. We don’t know the long-term consequences of ARVs, but they work and lead a pretty normal life.”

Still, he added, “I just turned 70. It hasn’t always been easy, but I’m one of the lucky ones.”

The panel also included representatives from the Global Fund to Fight AIDS, Tuberculosis and Malaria; the United States President’s Emergency Plan for AIDS Relief, or PEPFAR; and UNAIDS responding to the comments of the longtime positives and discussing policies and solutions. But when it was the longtime positives’ turn to comment, the temperature went from simmer to boil when one of the officials urged them to be less quiet and ask for more. That’s when Moses-Burton exercised her moderator’s prerogative and let loose a string of blunt, unvarnished remarks.