Thanks to new “cocktail” therapies, what was once a certain death sentence has been commuted to life. But the medical miracle comes not without a cost, and for HIV-infected patients and their physicians, living with AIDS is a team effort.
Alexandra Levine, with her patient of 16 years, AIDS survivor Steve Pieters. Levine watched Pieters fight his way back from death’s door in 1985. “She’s a wonderful teacher,” says Pieters of his doctor. “Every step of the way, she has taught me what was happening, and education is one of the greatest combatants against fear.”
teve Pieters rattles off the morning treatment ritual he followed after he was first diagnosed with AIDS in the early 1980s.
• Watch “I Love Lucy.”
• Meditate.
• Eat breakfast.
• Pray.
• Workout at the gym.
That was all a person with AIDS could do in the early days of the disease – wage a personal war on the killer-virus through spirituality, nutrition and sheer will.
Times have changed. Today, new anti-retroviral drug mixtures, or “cocktails,” make a long life possible for many who are infected with the disease that attacks the immune system. Some are going back to school. Others are getting married and starting businesses.
Standardized treatments and clinical trials have brought hope to people who once had none – people like Steve Pieters, 47, now healthy and armed for everyday life with a handful of pills and vials.
The improved therapies and longer life spans have brought on their own difficulties, though, from high medical costs to survivor guilt. Still, the long-term survivors carry on.
“I’m living past AIDS, through AIDS,” says Pieters. “I’m living my life beyond AIDS.”
When Pieters first went to see Alexandra Levine – now medical director of the USC/ Norris Comprehensive Cancer Center and Hospital and chief of hematology in the Keck School of Medicine – living past AIDS was a fantasy. In the early 1980s, no one knew what caused AIDS. There wasn’t even a diagnostic test for the human immuno-deficiency virus, or HIV, which later was proved responsible.
The virus opened the door to an onslaught of illnesses. Pieters lists them nonchalantly: hepatitis, pneumonia, shingles. But Kaposi’s sarcoma and lymphoma, two telltale cancers seen in AIDS patients, were the seemingly terminal diseases that brought him to Levine. Pieters became a regular patient and one of the first of hundreds of people with AIDS-related cancers who sought her help.
It was 1984. Pieters was not expected to see 1985. Even so, he threw himself into the struggle for survival.
“I studied nutrition. Laughter therapy. I worked out. And Dr. Levine told me to apply these things as if they were medication – in a disciplined way,” he says. “She believes in the mind-body connection, and she encouraged me to use it.”
That encouragement and belief that survival is possible created a caring bond between doctor and patient – a special relationship noted time and again by long-term AIDS survivors.

n 1985, Levine and other medical scientists at the forefront of AIDS research turned to a new pharmaceutical weapon to fight the mysterious virus. She invited Pieters and 11 other volunteers to participate in a promising National Cancer Institute clinical trial at the USC/Norris Center for an experimental anti-AIDS drug called Suramin, which inhibits a blood enzyme that HIV needs in order to reproduce.
Within six weeks, the drug had sufficiently suppressed the virus so that Pieters’ immune system could kick in.
“The Suramin worked,” Levine says. “Both cancers went into remission and have never recurred.”
But the drug proved too toxic for many AIDS patients. Eventually all of the other members in Pieters’ test group died. Pieters himself became so wasted he was sleeping 22 hours a day and his adrenal glands stopped functioning. Suramin was scrapped as a potential AIDS-fighter, though these trials helped advance AIDS research.

Physician Ann Khalsa

Researchers now know that HIV reproduces constantly in the body from the first day of infection. Virus-fighting immune cells, called CD4 T-cells, attack HIV and initially sweep much of it away. For every virus particle cleared, however, at least one new one appears. This creates a standoff that can go on for months or even years, during which a person may show no symptoms.
Over time, however, the number of virus particles increases and CD4 T-cells decline. The virus can make between 1 billion and 10 billion copies of itself daily. The immune system withers under the viral onslaught, leaving the body vulnerable to other painful and life-threatening diseases.
Physicians and medical scientists had tried individual drugs to suppress HIV throughout the early 1990s, finding no silver bullet that worked for all patients – and certainly no cures. But by 1996, they began to have success with “highly active anti-retroviral therapy,” or HAART, which combines at least three anti-AIDS drugs into one treatment regimen.
“After the widespread use of HAART, the death rate from AIDS went down 49 percent,” says Levine, who chaired the Research Committee of the Presidential Advisory Council on HIV/AIDS, created by President Clinton in 1995. “New opportunistic infections in people infected with HIV went down by 73 percent as well.”
Today, Steve Pieters has recovered. Now working as a public relations specialist for Playboy magazine, he is strong, enthusiastic and symptom-free. HIV is below the level of detectability in his blood. He takes a drug called Combivir, which combines the AIDS drugs AZT and Lamivudine, as well as the anti-viral drug called Acyclovir. Like many AIDS patients, Pieters swallows the drug combo to help his body suppress the virus day after day. Twice a month, he also receives hormone injections administered at the USC/Norris Center.

For many of those who are HIV-positive, the therapy means a renewed shot at a good life. Antoine Martin (not his real name) has taken his 14 pills a day for so long, it’s just an unremarkable part of his routine. Although he once had a case of shingles and a touch of walking pneumonia, he has never had a serious AIDS-related illness such as Kaposi’s sarcoma or lymphoma.
“I feel quite confident about my health,” Martin says. “AIDS is still on my mind, but I’m not thinking about it every day. Life is about living each moment. Besides, tomorrow’s not guaranteed for anyone.”
Martin tested positive in 1989 as a 19-year-old college freshman. “My world was quite sheltered,” he recalls. “Back then, AIDS was new. It was taboo. When I was diagnosed, I said, ‘It can’t be me. I can’t have it.’”
The fears of a slow, painful death, isolation and being ostracized by family and friends sent his spirits plummeting. He became suicidal. “I wanted to drive off a cliff,” he says. “That was on my mind every day.”
Doctors measure HIV’s progress in patients in part by testing the quantity of CD4 T-cells in their blood, and Martin’s counts were dipping precariously low: 400 to 500 cells per cubic millimeter. About 1,000 cells is considered normal, and anything below 200 leaves the body vulnerable to full-blown AIDS.
His community health clinic referred him to USC physicians in the Division of Adolescent Medicine at Childrens Hospital Los Angeles. Within a year, Martin began treatment with AZT and started attending support groups through AIDS service organizations. Gradually, thoughts of suicide melted away, replaced instead by a hope for survival.
At age 23, Martin switched over to the LAC+USC Medical Center HIV/AIDS clinic known as “5P21,” one of the largest AIDS clinics in the nation. That’s where he met Ann Khalsa, USC associate professor of clinical family medicine and director of HIV clinical training at the Pacific AIDS Edu-cation and Training Center.
“I just had a connection with her,” Martin says warmly. “Your doctor is really the key. I’ve had several others, and I didn’t have a connection. I didn’t feel safe. But every time I go to see her, I can ask any question I want.”
Khalsa is the one who introduced Martin to the idea of HAART. She suggested a combination of three drugs, but he was skeptical at first. He wondered how he would ever be able to adhere to the complex schedule of pills: some taken with food, some without.
“It was difficult,” Martin says. “But I wanted to live, so I had to make a change.”
Today, he’s 30, otherwise healthy and employed full-time as a youth leader for middle- and high-school teens in Los Angeles. He’s gone sky-diving and white-water rafting; he has taken up meditation.
Martin sees Khalsa every three months at the USC University Hospital Family Health Center for check-ups, but other than the pills he takes at breakfast and dinner – two nucleoside analogs, Lamivudine and Stavudine, as well as the protease inhibitor Viracept – the signs of HIV have faded into the background of his life.
“I’ve been blessed,” he says. “Now I have no regrets, because [my disease] has made me who I am. I used to be aimless with no direction. But going through denial, coming to terms with HIV and forgiving myself and those around me has helped me move forward.”

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Keck School of Medicine

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“I’ve known Dr. Khalsa for years. I feel like I know her as a friend, not just as a doctor. You have to build that partnership, that feeling you’re working together. Because this is a long-term issue, not something temporary. It’s not a sprained ankle.”
– Antoine Martin
photographs by Carl Studna

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