Today, Johnson looks healthy. His 5'7" frame carries 144 lbs.; at 43, he runs and lifts weights. Of course many people live with HIV for years before developing AIDS. But what is striking is that, for over 18 months, there has been no trace of HIV in Johnson's blood. In his recent book Working on a Miracle, Johnson tells the story of his battle with HIV and the at least temporary success he has achieved by bombarding his system with a host of drugs. Though his treatment has since become accepted, Johnson was one of the first to advocate using aggressive tactics before the onset of AIDS. "What I hope comes across in the book," he says, "is that there are a few crude weapons that, when shot at the same time, can at least slow down this killer."
For Johnson, the need to fight back quickly became obvious. Six weeks after his accident, blood tests showed the virus killing off his CD4 cells—which he calls "field generals for the immune system"—at an alarming rate. "It was as though someone started the clock ticking," he says. He began devouring articles on HIV. Reading of new studies showing promising results in patients treated with a combination of drugs, he put himself on a potent mix of the anti-HIV drugs AZT, DDI and Delavirdine. He became nauseous and developed a rash, but after 10 months of slow improvement, he tested negative. Once a retest confirmed his condition, "I began to think we really might be able to turn this around."
While the drugs worked their magic, Johnson reassessed his life. "As a physician," he says, "I know that you can't sustain your health and battle this virus without being emotionally happy." Shy since his Boston childhood (his music teacher mother, Mary Fraley, says "he wasn't the kind who'd run up and put his arms around you"), Johnson was a dedicated loner. He usually ate dinner at the hospital and spent his off-hours alone in his small Nashville apartment. He decided something had to change.
Around that time he read My Own Country, by fellow doctor Abraham Verghese, about AIDS victims in rural Tennessee. Johnson was particularly moved by the plight of a woman identified only as Vickie, who had contracted HIV from her husband and then cared for him until he died. Johnson contacted Verghese, who put him in touch with Vickie, and the two began talking by phone. Soon afterward he started dating the nursing student, who lives 300 miles away, in eastern Tennessee, with her two children. Their relationship, says Vickie, 38, "is very special. He shows me nothing but respect." Says their friend, an AIDS counselor: "It's as though he's saving them both."
He just might be. In 1995, Johnson took over Vickie's treatment, prescribing a medley of drugs similar to his. "I couldn't bear to let her just disintegrate," he says. Though Vickie still has detectable levels of HIV, her CD4 cell counts have risen dramatically. Says Verghese, who wrote the introduction to Working on a Miracle: "The pundits say AIDS can't be beaten, but you can't convince them of that."
The pundits do warn against excessive optimism—even in Johnson's case. Anthony Fauci, director of the Institute of Allergies and Infectious Diseases at the National Institutes of Health, has seen a number of cases where HIV seemed to vanish, only to reappear. "You have to wait and see whether HIV stays undetectable for a considerable period of time before you can make any definitive statement," Fauci says. According to IMS America, a company tracking pharmaceutical information including AIDS treatment, over 100,000 AIDS patients are taking-one of the new FDA-approved protease inhibitors, which have shown promise in halting the progress of HIV, though experts say they do not know the longterm effects of these drugs.
Johnson knows he is in uncharted waters, but he's sticking with what works. Twice a day he takes a cocktail of 30 drugs and vitamins, including two protease inhibitors, at a cost of $2,000 a month. Luckily he has a good job: Each day at 9 a.m., he arrives at Vanderbilt, where he still works as a neuropathologist and professor—and still performs autopsies, even on AIDS victims. "For me, the ultimate revenge is getting up and going to work," says Johnson. "As long as you do that, you've achieved a miracle."
DAN JEWEL
BONNIE BELL in Nashville
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- Bonnie Bell.
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