Measuring the Miracle: The Truth about AIDS Meds

By Jessica DuLong

"It's like starting to sprint and then you realize they've put the tape out further. There's not enough energy left."

"It's the Lazarus syndrome," Ronald Johnson explains. "I cite myself as an example. I've been positive — well, I've known I was positive — for 10 years. I just assumed by the time I'd be 50 I'd be dead. Now I'm 52, wondering what do I do?"

For Johnson, associate executive director of the Gay Men's Health Crisis (GMHC), the oldest AIDS organization in the US, the impact of new AIDS treatments is a fitting parallel to the bible story of Lazarus' resurrection.

"There were many people who were practically on their death beds," says Johnson. "People have been all but brought back to life."

In 1993, nearly 45 thousand people in the United States died of AIDS-related causes, according to Centers for Disease Control and Prevention (CDC). Today, though the number of HIV-infected people continues to climb, the death toll has dropped almost 62 percent with 17,171 deaths recorded in 1998.

The declining death rate, experts explain, is due in large part to the success of protease inhibitors, or "cocktail" treatments, first approved by the FDA in 1995. What the numbers don't explain, however, is the impact this "new lease on life" has had on individuals who, instead of planning for life, had been preparing for death.

While insisting that AIDS is "still a terminal illness," Johnson explains that today, people with AIDS face the new challenge of managing AIDS over the long term.

As with any chronic illness, the first task is treatment. "Being on medication means you're going to be on it for the indeterminate future," says Johnson. "The regimen is complicated and juggling all that has created new needs like the issue of treatment adherence."

Although managing medicines can be a problem with many chronic illnesses, with HIV, compliance is often a major struggle. The "miracle" drug cocktails have been known to cause extremely unpleasant, and sometimes unbearable, side effects ranging from nausea and diarrhea to diabetes and "buffalo hump" (a redistribution of weight that can cause disfigurement).

While a rigorous treatment regimen can be the key to survival in many people with HIV, the stress caused by keeping such a tight medication schedule can be overwhelming. Ironically, the stress of survival itself can present it's own dilemma.

"It's like they said goodbye and now they're back again," says Margaret Chesney, Ph.D., who researches coping in people with HIV/AIDS at the University of California at San Francisco's AIDS Research Institute. "It's like starting to sprint and then you realize they've put the tape out further. There's not enough energy left."

"It's a wonderful dilemma, but it's unsettling," Chesney explains. Coping requires a complete cognitive shift.

Johnson has experienced first hand the dilemma of unexpected longevity. "I did not plan for the future. I had reconciled myself to the fact that I was going to die. I couldn't think about my life two or three years in advance," he says.

On a practical basis this meant Johnson paid no attention to things like retirement benefits. On an emotional level it meant surviving while others didn't.

"For many of those years I was with my partner who had AIDS," says Johnson. "He died and I'm alive. The sense of unfairness is there. ... It's almost a survivor guilt. If they could have lasted one more year they could have benefited from treatment. There's a lot of regret."

However promising new drug therapies seem to be, there is still no cure for AIDS. And as it turns out, recent studies have shown that protease inhibitors do not work for everyone.

Even when a treatment seems to be working, there are no guarantees. "For some people it's just postponing the inevitable. It's a reprieve," Chesney explains. And, she says, it is not uncommon for people who were doing well to breakthrough and fail.

With the introduction of each new treatment, the collective sigh of relief is almost palpable. But, this relief is a bit premature, explains Chesney, because people are still dying.

The idea that AIDS is treatable could have dangerous results, Chesney explains. Because of treatment advancements, she explains, "the consequences of getting infected are somewhat de-emphasized, somewhat more muted."

One alarming affect of this shift is a "false sense of hope" for the future. "We've done studies that show that people are taking more risks because there are treatments out there," says Chesney. The shift in thinking from HIV-infection as a guaranteed death sentence, to AIDS as a chronic illness threatens to raise infection rates.

"The assumption is that science will march forward — that by the time it affects me, they'll have something for it," says Chesney. But science offers no such guarantees.

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