amfAR, The Foundation for AIDS Research

Congratulations to Loren Jones, “Shero” of the Month!

LorenLoren Jones, a member of the Community Advisory Board (CAB) of the amfAR Institute for HIV Cure Research, was recently named “Shero” of the Month by Positive Women’s Network-USA (PWN-USA). Loren was a founding member and is currently a board member of PWN-USA. She was nominated as “Shero” by PWN-USA Executive Director Naina Khanna, who is featured in amfAR’s Epic Voices video series.

When Loren was diagnosed with HIV 35 years ago, she was living in Oakland, California, and, like other heterosexual African-Americans at the time, thought the disease only affected gay white men. She immediately went into denial, and didn’t even start taking HIV medication for the first 22 or 23 years that she had the virus.

“I learned a lot of things the hard way,” said Loren at amfAR’s HIV Cure Summit last November, where she was a panelist for the second year in a row. “I didn’t start taking HIV medication until my CD4s started dropping severely, and I had begun to suffer weight loss and general loss of energy. Within a year my CD4 count went up to normal levels, and then I felt incredibly stupid for having waited so long.”

“People often don’t take the meds out of fear that’s brought on by other people’s experiences,” said Loren. “Because I’ve been positive for so long, I’ve seen people, especially a lot of women, who tried so hard to be compliant, and they died anyway. And they dealt with issues of lipodystrophy, and other things like that. I also felt judged as a “bad girl” for having had multiple sexual partners and for using drugs. This made me distrustful about seeking medical care.”

matt and lorenamfAR Institute CAB members Matt Chappell and Loren Jones at the 2018 Cure Summit in San Francisco

Loren has evolved into an inspiring advocate for women living with HIV and for long-term survivors. She became involved with Women Organized to Respond to Life-Threatening Diseases (WORLD), which gave rise to PWN. The aim of PWN is to create a sisterhood of women living with HIV, and to prepare them to take on advocacy roles. Loren’s advocacy includes fighting misinformation and HIV stigma, pushing for female-specific research, and making sure that aging with HIV remains a central focus for discussions.

At the Cure Summit, Loren brought up some of the factors that influence women’s decisions whether or not to participate in clinical trials. “If I’ve got all kinds of other trauma, drama, and stress going on in my life, everything can kind of just go to hell,” she said. “And a lot of it is about the children. You know those children get up every morning no matter how you feel. You can preset the TV but they’re going to want you to sing Mr. Rogers with them. And you need to be able to do that.”

In addition to her role on the amfAR Institute CAB, Loren is chair of the CAB for the Center for AIDS Prevention Studies/Prevention Research Center at the University of California, San Francisco. We look forward to continuing to benefit from her perspectives and insights. Congratulations, Loren!