Illustration by Eric Dinyer
LIFE BEYOND AIDS Standardized treatments and clinical trials have created a new cadre of long-term survivors who continue living despite having the killer virus. by Alcia Di RadoSteve 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.
Go to 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.
Today times have changed. New anti-retroviral drug mixtures or "cocktails" make a long life possible for many that are infected with the disease that attacks the immune system. Standardized treatments and clinical trials have brought hope to people who once might have had none, creating a new cadre of long-term non-progressors-survivors like Pieters, age 46 and 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 difficult issues, from high medical costs to survivors' guilt, issues Pieters knows
Levine and Pieters celebrate his 10 years of living past AIDS
intimately. Still, the survivors carry on.
"I'm living past AIDS, through AIDS," says Pieters. "I'm living my life beyond AIDS."
When Pieters first went to Alexandra Levine, M.D., now medical director of the USC/Norris Comprehensive Cancer Center and Hospital, living past AIDS was a fantasy. In the early 1980s, since no one knew what caused AIDS, there wasn't a diagnostic test for human immunodeficiency virus, or HIV, which eventually was found to cause AIDS.
The virus opened the door for an onslaught of illnesses Pieters lists casually: hepatitis, pneumonia, shingles. But Kaposi's sarcoma and lymphoma, two telltale cancers seen in AIDS patients, were the seemingly terminal diseases that took him to Levine.
To Levine, professor of medicine and chief of hematology in the Keck School of Medicine, Pieters became a regular patient and one of the first of the hundreds of people with AIDS-related cancers who sought her help.
It was 1984. Pieters was not expected to see 1985.
"I guess I've got to do whatever I can do to shape up or ship out, literally," he remembers declaring. "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.
"She believes in the mind-body connection, and she encouraged me to use it."
That trust, encouragement and belief that survival was possible created a caring bond between doctor and patient-one that, to both their surprise and joy, has lasted 15 years.
New therapies
In 1985, Levine and medical scientists on the forefront of AIDS research turned to a pharmaceutical weapon to fight the new, mysterious virus. She invited Pieters and 11 other volunteers to participate in a promising National Cancer Institute clinical trial at USC/Norris for the experimental anti-AIDS drug suramin, which inhibits a blood enzyme HIV needs to reproduce.
Within six weeks, the drug suppressed the virus enough for Pieters' immune system to 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, and all of the other members of Pieters' test group eventually died. Pieters became so wasted he was sleeping 22 hours a day after his treatment and his adrenal glands became useless. Suramin was scrapped as a potential AIDS-fighter, though participants' cooperation helped push the progress of AIDS research.
Today, Pieters has recovered and is strong, happily enthusiastic and symptom-free. HIV is below the level of detectability in his blood. He uses a drug product called combavir, which combines the AIDS drugs AZT and 3TC, as well as the anti-viral drug acyclovir and two hormones, including shots administered at USC/Norris twice a month.
Like many AIDS patients, Pieters swallows the drug combo to help his body suppress the virus day after day.
Researchers now know that the virus reproduces constantly in the body from the first day of infection. Virus-fighting immune cells, called CD4 T-cells, attack HIV and initially sweep away much of the virus. For every virus particle cleared, however, at least one new one replaces it. That creates a sort of balance or standoff that can go on for months or even years, during which a person may show no symptoms.
Over time, though, the number of virus particles increase and CD4 T-cells decline. The immune system withers under the viral attack, leaving the body extremely 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 magic 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 was appointed chair of the Research Committee of the Presidential Advisory Council on HIV/AIDS by President Clinton in 1995. "New opportunistic infections in people infected with HIV went down by 73 percent as well."
AIDS drugs come in three classes with somewhat intimidating names: nucleoside analog reverse transcriptase inhibitors (NRTI drugs or nucleoside analogs for short); non-nucleoside analog reverse transcriptase inhibitors (known as NNRTI drugs); and protease inhibitors.
The much-publicized AIDS drug AZT is an example of a nucleoside analog. These drugs are chemicals with a structure similar to part of our own DNA. They keep HIV from making an enzyme needed to reproduce. The NNRTI drugs do the same thing, but chemically do not resemble DNA.
The last class, protease inhibitors, blocks the enzyme called protease. That enzyme is essential for the virus to activate.
HAART usually teams two nucleoside analogs or NNRTI drugs with a protease inhibitor. On this regime, the amount of HIV in a person's blood can drop dramatically, and the immune system appears to get a boost from more active virus-fighting cells within the body.
"They've clearly been effective in boosting the quality and length of life," Levine says, "but these drugs are not a cure."
Survival, but no cure
In the initial studies on HAART, about 80 percent of patients using the therapy achieved an undetectable level of virus in the blood. "That is a huge victory, but it still means that in 20 percent of cases, it doesn't work right off the bat," Levine says.
And an undetectable level of virus in the blood does not mean HIV is eradicated. One of the mysteries of the disease is how it hides in the body's cells, ready to emerge after months or even years of seeming inactivity. Scientists are still trying to figure out the mechanism for the viral hide-and-seek.
In many cases, the HIV virus in a person's body can change and grow resistant to the drugs that once suppressed it, forcing patients to switch to other drugs.
The other complicating factor, Levine explains, is that immune systems vary from person to person. Some people do better in living with the virus than others: about 15 percent of HIV-infected patients become long-term non-progressors, successfully keeping the virus subdued for years, and researchers do not fully understand why.
Pieters is one of those non-progressors, though he cannot quite explain it himself. It is partly medicine, partly mind, partly luck and other things unknown.
"I knew a lot of people who took much better care of themselves than I did, and they still didn't make it," Pieters recalls. "It was not at all unusual to have memorial services for people every month. Now, it's not that death is totally absent, but it no longer comes in that regular rhythm it once did."
Living with AIDS
Pieters and Levine both point out that the face of AIDS has changed. Once thought of as a "gay disease," AIDS does not discriminate. Women comprise the fastest-growing segment of the HIV-positive population, and many of them are among the working poor.
That, says Levine, raises issues about patients' access to medications that can keep them alive. "There are many individuals who simply can't afford them," she says, passion carrying in her voice.
Federal government subsidies through state-managed AIDS drug assistance programs help get medications to HIV-infected people who ordinarily could not afford them. In California, people making up to $40,000 a year qualify for help. But some states have restricted access to medications.
Drug assistance programs allocate about $750 per patient every month, according to the Kaiser Family Foundation. The poorest clients get help, but the middle class and working poor have a hard time keeping up with the bills, which average about $15,000 a year per person, says Levine. HIV-positive women who are uninsured or lack extensive education may find it especially hard to get crucial medicines.
On top of that, the medications can be difficult to take and require a variety of pills. "Some require you take them on an empty stomach. Others, a full stomach. There are all kinds of drug interactions," Levine notes. "Even in the best of circumstances, it's very hard to take medicines on an ongoing basis; and if you forget to take the drugs or miss a dose, that is a setup for the virus to become resistant."
There are side effects, too, including stomach distress and physical changes. Protease inhibitors may bring on lipodystrophy syndrome, in which a patient's belly swells while the arms, legs and face become gaunt, Levine says. A pad of fat known as a "buffalo hump" may grow behind the neck.
These factors combine to challenge the practical effectiveness of the new drugs on the market, she notes.
Despite the problems, Pieters is happy treatment options are growing. "There is a lot of reason to have hope, and hope is vital to life," he says optimistically.
Hope, trust and faith are among the rewards he has drawn from his closeness with Levine, a doctor-patient relationship that can be a crucial part of a long-term AIDS patient's survival.
"I've seen her get so angry at the disease," Pieters says admiringly. "I had a friend with lymphoma, and she tried everything to help him. She threw everything at it, trying to save him. But she always takes her anger and turns it into solutions."
Pieters, now a public relations specialist for Playboy magazine, sees Levine once a month at USC/Norris for checkups. They chat about relationships and activities, while Levine carefully monitors Pieters for any sign of a viral offensive. If Pieters has any questions, Levine quickly grabs a scrap of paper and draws a diagram to show how the virus or the drugs work. "She's a wonderful teacher," Pieters says. "Every step of the way, she taught me what was happening, and education is one of the greatest combatants against fear."
Usually, Pieters says, Levine jokingly calls him "boring" or "no challenge," dismissing him after an unremarkable physical examination and lab tests.
Though he faces life with optimism, Pieters admits the mental and emotional aspects of long-term survival among AIDS patients are far from trivial. Depression and fear of relapse are common. So is survivor's guilt. He shares those feelings and concerns with Levine, who feels the emotional strains of patients, too.
"At a certain point, I feel so battered," she says, "to be surrounded by so many people who have died after valiant fights. For the first time in the epidemic, HAART provides a sense of relief. But it is so hard to keep losing all these friends year after year."
Levine keeps fighting, hoping to prolong the lives of those with AIDS-through medicine, research and caring friendship-and pushing for prevention against the disease. Researchers at USC and across the nation explore possible vaccines for AIDS. And Pieters, like other long-term survivors, looks for a day when AIDS fades into memory.
"Now, with so many people surviving so long, it's not a bizarre concept to expand my life to appreciate it outside the disease," Pieters says. "My life isn't all about AIDS anymore."
For more information about AIDS research and treatment, or to learn about The Doctors of USC, call 1-800-USC-CARE (1-800-872-2273).
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