MACS volunteer describes life with HIV infection
August 1, 1999 5 minutes read
MACS volunteer describes life with HIV infection
Even with protease inhibitors, fear of death exists
The experiences of 43-year-old Chris Camp, MA, illustrate the continuing emerging trends that front-line AIDS caregivers face every day.
The Baltimore resident has been active in AIDS work since 1982, which coincidentally is also the year he believes he may have contracted HIV, although he didn’t know his HIV status until four years later.
One of Camp’s most enduring impressions of AIDS involves his experience with a friend in Dallas who was in robust health.
"He had problems with allergies, and I’ve had allergies since I was a kid," Camp says. "So this friend went into the hospital for what he thought was bronchitis, and two weeks later he was dead with pneumonia, and that so shocked me."
When you receive news that you are infected with HIV, your fears in 1999 are no less than they were in the mid-1980s when Camp first was given the bad news, he says.
"I think the first thing on your mind is that you’re going to die, and that’s still the same today," Camp says. "You’re reeling from that initial shock, and you have to work through that shock before you can be helped."
Camp understands, not only because of his personal experience, but also because he works as a training specialist for the State of Maryland Department of Health and Mental Hygiene. His job is to train people to become HIV prevention counselors, and he often hears the personal fears and testimonies of HIV-positive people.
While the public may have become lulled into believing scientists have licked the HIV epidemic through newly developed protease inhibitors and combination therapies, Camp and other HIV-positive people know better. "Now people are becoming infected with strains that are resistant to drugs, and that’s pretty frightening," he says.
I didn’t want to accept the idea’
Camp also has experienced the heavy denial that is common in people diagnosed with HIV. For more than a year, he refused to believe he had the virus, and had no interest in taking drugs like AZT.
"That was about the time when they didn’t know the proper dosage to give to people, and they’d give AZT every four hours, and so you’d go to concerts and hear everyone’s [drug dosage reminder] alarms going off," he recalls. "But my CD4 cell count levels were so high that I didn’t want to accept the idea that I was HIV-infected."
Camp moved to Maryland in 1987 and requested another HIV test. While his CD4 cell count still was high, the test came up positive.
Finally the reality sunk in. Camp, along with his lover, became involved in the national Multicenter AIDS Cohort Study (MACS). Camp met AIDS researchers through the study, including Mary Lou Clements Mann, who worked on the AIDS vaccine until she was killed along with her husband, AIDS researcher Jonathan Mann, in a recent Swiss Air accident over Nova Scotia.
"I met a lot of people in the field of research who had a true compassion for people living with the disease," he says. "They took an interest in their patients beyond drawing the lab specimens; they wanted to know how things were going with you, and they would ask questions about your families and took time to interact with patients."
Camp, who has been infected with HIV for most of his adulthood, has practiced safe sex for nearly as long. But it wasn’t an easy philosophy to embrace, he says. "Initially, when people were given information about what they had to do to protect themselves, I don’t think any of us had any idea that we were talking about a lifetime practice, and not just a brief intervention," Camp explains.
Maintaining safe sex practices over the years is difficult, and now Camp sees an even bigger generation-gap problem in which younger gay men are misinformed about the disease. Some younger men believe the current drug cocktails are a magic bullet that will kill the virus, and others can’t imagine the death and destruction that AIDS caused only 10 years earlier because they might not know anyone who has died from AIDS.
"For me, I’ve lost over 400 friends, associates, and loved ones to this disease," Camp says. "I have an address book you wouldn’t believe with three-quarters of the names crossed out with the dates when they died, and I have cities all around the world that are like ghost towns to me."
Punitive attitudes resurface
Another unpleasant new trend is a resurgence of the punitive attitude that has been associated with HIV since it was first identified as being a "gay men’s disease." It took nearly 10 years and movies like "Philadelphia" for the public to begin to have empathy for HIV-positive people, Camp says.
Now, because of well-publicized cases, such as the New York man who was convicted of purposely infecting assorted girlfriends with HIV, the public is beginning to think of HIV-infected people as predators who will take other people down with them, Camp says. "It’s scary to see how the attitudes have changed."
While Camp considers himself lucky to have survived so long with the virus and have had undetectable viral counts for the past four years, he still has envy for people who appear resistant to the virus. So far, Camp hasn’t had any opportunistic illnesses, but he worries that they might not be far off because his CD4 cell count has fallen to about 200.
Camp also lives with all of the discomfort associated with drug side effects. He began drug therapy in 1994 when his CD4 cell count first began to fall. He signed up for drug trials in order to obtain the latest and most potent medications.
His current list of drugs reads like a library card catalog: "An indinavir that is the blue chalky stuff that dissolves in your throat if you’re not careful" Stavudine (d4T); hydroxyurea; an efavirenz, Sustiva, at night before bed; several drugs to fight side effects, enhance appetite, and relieve anxiety; plus steroids because he’s lost 40 pounds of muscle mass in the past year.
"I carry the pills around with me and make sure I have them at all times, so I’m not stuck someplace without them and have to miss dosages," Camp says. "I’m excruciatingly compliant."
Soon he’ll probably have to add some prophylactic drugs to the list to stay one step ahead of the opportunistic diseases.
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