‘I figured if they can put a man on the moon, if they spent enough money on this [HIV], there was no reason we couldn’t beat this.’
It’s hard to miss Lynda Dee at an HIV conference: her unique voice will guide you like a GPS tracker. She’s the first to admit she’s got a big personality and talks like a brash Italian New Yorker, though she hails from East Baltimore—land of John Waters and ultimate diva Divine. Her voice is often being directed at researchers, or Big Pharma corporate reps, or fellow HIV activists as she lets loose about her concerns related to HIV research. She’s a spitfire, always has been, and clinical trial activism has proved an ideal battleground for her lifelong desire to, as she often puts it, make things right for her people. These days, her people include those who will be recruited to join the planned remission trial at SCOPE.
Dee now serves as a co-chair for the Community Advisory Board of the amfAR Institute for HIV Cure Research at UCSF, sponsor of the planned remission trial (see main story). By now, she’s been on dozens of CABs since her start in AIDS activism in the late ’80s. She’s OG—a member of a vanguard of community activists who began pushing their way into drug company, government, and scientific meetings, demanding a seat at the table to help shape the HIV research agenda.
“I was an activist my whole life, from the Vietnam War,” Dee says, reflecting on her watchdog journey. “I was a recovering heroin addict, but still a real party girl when I met all of my gay friends,” Dee admits, a blunt truth-teller. “They took me away from the mean heroin streets. They really saved me and took care of me; I mean they probably kept me from dying and I mean that literally. I loved those boys and thought they would always be with me,” she adds.
“I started college and later law school and became a criminal lawyer because I wanted to be a Fourth Amendment girl, you know, and get everybody off the hook from lying cops,” she jokes. Turns out her skills have been very useful to the HIV movement.
Dee, who is heterosexual, fell into hell and heaven at the same time. She partied up and down the east coast with her gay friends and eventually moved to New York. Soon she watched helplessly as many of her friends fell sick and died of “the most horrible diseases you can ever imagine,” she says.
Her grief—and fury about government inaction around the lack of lifesaving drugs—pushed her into trials activism. “I figured if they can put a man on the moon, if they spent enough money on this [HIV], there was no reason we couldn’t beat this. I’m a big control freak, so I figured I could be very helpful in pushing our way in and being able to change things,” she explains. “I had even more motivation to be involved in the fight against AIDS when my husband was diagnosed with AIDS in 1986. He died from AIDS complications in 1987.”
Dee attributes being the screamer she is today to her parents. “My family was nuts,” she says, smiling. “My mother’s from Italy; she is exactly where I get my fight from: she’s fierce and makes me look touchy-feely.” She joined her first CAB at the Johns Hopkins AIDS Service and has been involved in many advisory bodies in the years since. An activist pal, Jeff Sheehy, invited her to join the amfAR Institute for HIV Cure Research. She brought along Jeff Taylor when Sheehy had to drop out.
From there, she’s made it a personal mission to diversify the group, well aware of the historic underrepresentation of women and communities of color in HIV clinical trials. “It’s important for me to get some diverse people on, because I feel we’ve made so many mistakes in the past. We have a chance to do it right now.” That includes outreach to HIV-positive women’s groups and trans communities. She organizes one CAB business call a month, alternating with a scientific webinar for newer members to get up to speed on cure science. Once a month, she also organizes an HIV education session in Baltimore for community groups and has invited cure scientists to discuss the pipeline.
“They were enthralled,” says Dee of the community audience. “They’re all African Americans, MSM [men who have sex with men], and transgender women. They were so into it.” She hopes a planned forum for positive women in Oakland in May will spur local interest in joining new cure trials and CABs too.
Looking ahead, she’s closely eyeing the trial’s safety issues, but admits to feeling hopeful, too. “I think we might have some long-term remissions; I hope we can get to that point,” she says. —ACD & RJ