As a volunteer on the community advisory board for the amfAR Institute for HIV Cure Research, Loren Jones advises women on clinical studies that may help them get proper medical care. (Anne-christine d'Adesky/KQED)
Did you know that there are more women living with HIV in the world than men? Or that young women and girls make up 60 percent of youth cases? If you didn’t, Loren Jones won’t be surprised. Many people in the U.S. still view HIV as a disease that impacts men – especially gay and bisexual men – far more than women.
“People don’t see women,” says Jones, who’s 65 and has had HIV for more than 30 years. “Even women often don’t see women. All of the attention has focused for so long on gay men.” She shrugs. “That really hasn’t changed that much.”
Jones is a friendly, outspoken woman who also fits the broad profile of women and girls most at risk for acquiring HIV in the U.S.: she’s heterosexual, African-American, has been homeless, and had boyfriends who did drugs. She’s also been a mother living in poverty.
“If you’d have told me when I was younger that I’d be here, doing what I do, I’d a told you no way,” says Jones. “But you know what? We need more women to be getting treatment and more women in clinical trials.”
Jones is a volunteer member of the amfAR Institute for HIV Cure Research’s watchdog community advisory board, or CAB. Her role is to inform others about new cure studies, such as the UC San Francisco remission study starting this fall. Clinical trials, she knows from personal experience, are a great way to access HIV care.
“I was actually positive for 20 years before I took meds,” she says, “I got into treatment by joining a study.”
Jones was the second person in California to join the ongoing WIHS, or Women’s Interagency HIV Study, a pioneering observational study of HIV in US women. Back then, she’d lost weight and her immune T-cell count was way down – signs of HIV’s advance.
“I joined to help myself,” she says. “I had no money or insurance, and I got excellent care. Plus, I met others who helped educate me. It’s helped me survive.”
The care in a clinical trial is free, and participants were given a small stipend. Since then, Jones has remained on standard HIV therapy and is in good health, with an undetectable viral load.
In the trials, she also learned how few women participate in HIV drug studies and how African-Americans and Latinos are historically underrepresented in HIV trials. In 1994, 9 percent of HIV drug trial participants were women; a decade later, that number had doubled, but by 2011, it was still only 22 percent, according to one Canadian study. It also showed African-Americans and Latinos with HIV received suboptimal care compared with whites – another continuing trend -- and that clinical trials could help close the gap by providing top-level care.
WIHS studies have shed important light on how women may process HIV drugs differently than men. They’ve also shown how domestic violence, poverty, sexual abuse and racial inequity are major factors that put HIV in a woman’s path.
All three are elements of Jones’ HIV story, itself a testament to her grit and ability to survive.
Jones, who is gregarious and likes to laugh, was born in Philadelphia. She describes a very lonely childhood growing up in the care of strict Pentecostalist relatives, apart from her parents and five siblings. She loved books and liked school, until she was bussed to a mostly white school. “I took the ghetto bus to a middle-class neighborhood,” she says. “It was absolutely miserable.” Her isolation continued at Penn State, where she studied nursing, struggling to make ends meet.
That’s when her destiny shifted. While at Penn State, she was invited to dance in a strip bar. “I was a skinny little string bean; she jokes, “there was nothing to see. But the money was good.” After that, she grabbed her freedom. “I was 17, 18,” she recalls, “and California was a big mystery to me. People talked about diversity and freedom. I wanted that.” She hitchhiked to Oakland in seven days -- with seven dollars in her pocket. “I found Berkeley – there were people walking around blowing bubbles in clown suits on stilts.” She never looked back.
She didn’t see HIV coming either. Jones was still a church-going good girl, wide-eyed about the world. One day a handsome guy drove by on a motorcycle and she hopped on. “He was a wild child,” Jones recalls, laughing. They had a child but, too soon, her boyfriend took off. Jones relied on temp jobs, but with a toddler, it was too difficult. She fell into homelessness, lived in her car, then joined a tougher crowd. “This was the 80s; they were outlaws, not a violent gang, but tough enough,” she says of her circle. “We were drinking and drugging in the Oakland hills.”
One day she visited a health clinic where they offered the HIV test. She wasn’t prepared, but wasn’t totally surprised, to get a positive result. She told no one for two years. “It was very lonely,” she says. “Back then, if you tested positive, you were definitely gonna die; that was the message.”
“I want women to know about what’s going on with cure research,” says Jones, explaining her newest focus. “We need our communities in here. We can’t just leave it up to the scientists. They need us.”
Jones says her role on the Community Advisory Board isn’t to recruit, but to let women know the studies that are available. But she’s very aware of hurdles standing in the way for women to participate – including poverty, health literacy and distrust of the medical profession.
“I overcome the obstacles by talking about my experience,” she says of her approach. “I may be college educated, but I ride the bus too.”
“I talk to women who are mostly my home girls; they are like me,” she adds. “They are black women with low income, who live in residential hotels, single income, who live with their mama – women who are really down to earth. We can relate.”
Jones says she’s learned in her journey that she doesn’t have to be a scientist to help others.
“I can take what the scientists say and bring that back to the ghetto, because, let me tell you, the scientists don’t know how to talk to people in my community. I’m comfortable in both worlds -- the scientific and the street. My message is: ‘We gotta find more ways to invite the community to be involved in this cure research.’ They need to get on board.”
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