One of the strangest columns in American journalism” (at least to The New Yorker ), the featured lab results of publisher Sean Strub—whose “full blown” AIDS got worse by the month—did as much as anything else to humanize the disease in our early years. Happily, Strub’s post-protease health rebound left us little bad data to demystify, so we invited Chardelle Lassiter, Marlene Diaz and daughter Margaretha deJesus, and “Sick & Tired” columnist Stephen Gendin to bare theirs. (True to his and our mission, when Gendin died, every detail—from a “Lab Blab” postmortem to a cover shot of his corpse—was disclosed to readers.) Now, let’s play catch-up with our survivors:
Sean Strub, 45
Strub’s medical history is a window onto AIDS’ harrowing early years. Infected in the late ’70s, when the “mysterious gay cancer” first materialized, and diagnosed in ’85, when the HIV test was first approved, he spent the next decade at breakneck pace: burying two lovers, marching with ACT UP, running for Congress, launching POZ and, most important, partnering with Joe Sonnabend, MD, a maverick AIDS doc who treated AIDS from the premise that it could be survived. “The most important thing Joe has taught me,” Strub says, “is the power of skepticism. There is a source of strength in knowing ‘they’ are never always right—and in being critical and even suspicious.”
By late ’95, however, Strub was losing power: CD4 count 1, viral load 3.3 million, lungs covered with Kaposi’s sarcoma. He was literally wasting away. Call it dumb luck that he managed to hang on long enough to catch the protease wave in ’96. Within months, his CD4 count had leaped to 225, and his viral load was undetectable. Today, on his second combo (plus a few holidays), his numbers are even better. Better still: “I’m fairly healthy,” Strub says—especially since beating last summer’s severe depression, which hit after he switched to a Sustiva-based regimen and quit when he ditched the drug. Next up: finding a new doc now that Sonnabend has retired.
Marlene Diaz, 40, & Margaretha deJesus, 11
Mother and daughter are “alive and kicking after 11 years—and that should give people hope,” says Marlene Diaz, who got HIV in 1992, when she was raped while two months’ pregnant. Margaretha was positive at birth.
Healthy now, Diaz says her most devastating illness was an episode of wasting several years ago. Human growth hormone (Serostim) conquered it. Then came another HIV body bummer: lipodystrophy’s all-too-familiar fat havoc. “I have this pouch and look like the Marsupial Mom,” she jokes. Makeup, a good coif and a dab ofattitude help lick the lipo blues. And with a CD4 count of 554 and a viral load of 88—down from 96,789 a year ago—she says lipo is low on her list of concerns.
Tops on that list is Margaretha. “For a kid with HIV, she lives a fairly normal life,” Diaz says. “She goes horseback riding and just joined the hockey team.”
Margaretha reports, “I have no health problems, except that my meds weren’t agreeing with my stomach. I kept throwing up and missed a lot of school.” Recently, her doc changed her regimen. Within months, her CD4s hit 642, and her viral load plunged from 300,000 to undetectable.
Diaz bugs Margaretha to eat more, worrying that she’s too thin. But she calls her daughter’s new numbers “nothing short of a miracle.” And who could argue with that sentiment?
Chardelle Lassiter, 57
Lassiter, who tested positive in 1988, steered clear of HIV meds for 12 years, taking pains to boost her health with homeopathy and a diet of fresh foods and raw veggies. Finally hit with HIV symptoms four years ago—severe weight loss, neuropathy, fatigue—she took a deep breath and swallowed her first triple-drug cocktail. Her symptoms were soothed—except for the neuropathy (which began, slowly, pre-meds, suggesting to the scientist in Lassiter that, contrary to popular opinion, it’s caused in part by HIV itself). “The numbness and stiffness have impaired my ability to walk normally,” she says. Neurontin (gabapentin) helps, but not enough, so she’s on the prowl for a neurologist with a novel solution others have missed. And the real answer to “How are you?” she reminds us all, is to be found in “the state of my being, dealing with grief for all the people we’ve lost, and fear for my own future.”