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n the initial studies on HAART, about 80 percent of the patients using the therapy achieved an undetectable level of HIV 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.
An undetectable level of virus in the blood does not of course 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 this viral hide-and-seek.
In many cases, the HIV in a person’s body can change and grow resistant to the drugs that once suppressed it, forcing patients to switch to other drugs.
Another complicating factor, Levine explains, is that im-mune systems vary from person to person. Some people cope better with the virus than others: about 15 percent of HIV-infected patients become long-term non-progressors, successfully keeping the virus subdued for years. Researchers do not fully understand why; they attribute it partly to medicine, partly to state of mind, partly to luck and partly to other factors unknown.
Levine’s patient, Steve Pieters, is one of these non-progressors. “I knew a lot of people who took much better care of themselves than I did, and they still didn’t make it,” Pieters says. A decade ago, he 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.”
In Los Angeles, deaths from AIDS have fallen sharply, from 2,607 in 1994 to just 515 in 1997, a decline attributable to HAART, according to Khalsa.
The face of AIDS has changed too. Though it was once thought of as a “gay disease,” the label no longer fits. Women, many of them from among the working poor, comprise the fastest-growing segment of the HIV-positive population.
That raises concerns about patient access to life-saving drugs. “There are many individuals who simply can’t afford them,” says Levine, passion rising in her voice.
Federal subsidies through the state-managed AIDS Drug Assistance Program help get medications to HIV-infected people who ordinarily could not afford them. In California, people earning up to $40,000 a year and families earning up to $55,000 qualify for help. But some states, because of budgetary constraints, have restricted access to medications and capped the number of people eligible.
Drug assistance programs allocate about $750 per patient every month, according to the Kaiser Family Foundation. The poorest clients get help; it’s the middle class and working poor who struggle to keep up with the bills, which average about $15,000 a year per person, says Levine. Uninsured women who aren’t well educated may find it especially hard to get treatment.
Treatment involves a complex regimen of pills. Some must be taken on an empty stomach; others, only after a meal.
Physician assistant Debbie Johnson with a patient |
“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.”
Side effects can range from stomach distress to pronounced physical changes. Protease inhibitors may bring on lipodystrophy syndrome, in which a patient’s belly swells while the arms, legs and face become gaunt. Or a pad of fat known as a “buffalo hump” may grow behind the neck.
Khalsa has begun to see other possible side effects of the drugs as her HIV-positive patients live longer: certain cancers, osteoporosis, high cholesterol, diabetes and high blood pressure, for example. Case reports have documented such effects, though long-term studies aren’t yet available. Clinicians are also finding incidents of lactic acidosis (a buildup of lactic acid in the blood) and fatty liver (an abnormal buildup of fat in the liver cells).
Debbie Johnson, a physician assistant at the 5P21 clinic, says medical literature is still uncertain of the long-term side effects of various medications. But the drugs patients are taking today are the best available, she says, and certainly better than the alternative: dying of AIDS.
“For a long time, we were just paddling, trying to keep patients alive,” Johnson says. “Now we’re actually looking at improving their quality of life.”
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he side effects of HAART aren’t only physical. Many patients are also developing severe mental illnesses, depression and anxiety disorders that worsen at a rapid clip.
“I think there’s something going on in the brain of those living with HIV for long periods of time that we don’t understand yet,” Khalsa says.
Other psychosocial effects are less obvious, but still a factor to consider. One of Khalsa’s HIV-positive patients managed to beat back her virus through HAART, only to watch her husband die of AIDS and her teenage daughters run away from home. Another HIV-positive woman underwent successful treatment only to see her son die of AIDS.
“Every patient has a story,” Khalsa says.
Robert Bolan knows the stories well. Bolan, who is director of HIV services for the Keck School’s Department of Family Medicine and medical director of the Hollywood-based Jeffrey Goodman Special Care Program of the Lambda Medical Group, has been working with AIDS and HIV patients since the epidemic began. Over the last four years, he has witnessed some of HAART’s least anticipated effects on patients.
“People who had been very sick, and then were fortunate enough to have benefited from the therapy, were initially very elated, surprised and in some cases perplexed,” Bolan says. “Many had been planning to die.” Improved health forced them to make huge adjustments in their attitudes toward illness and life. “With their newfound relative health, those changes could be very distressing,” he notes.
Some patients had already cashed in their retirement savings and bank accounts on the assumption that they soon would die. Suddenly, these people had a future – and found themselves penniless.
It’s a phenomenon Bolan calls the “surprised survivor.”
“They found they were living – and would go on living for a while – but without resources and without friends,” he says. “It never would occur to some people that someone would have a lot of emotions about surviving AIDS, and the emotions may not all be good ones.”
Within the past year, Bolan says he’s seen many patients whose immune systems have responded to HAART returning to everyday life and becoming complacent. “Some are beginning to get a little careless with their treatment,” he says. “And the medication is unforgiving.”
Such carelessness can be very costly. “If you forget to take the drugs or miss a dose, that is a set-up for the virus to become resistant,” says Levine.
A patient who misses as little as 10 percent of the HAART doses may have a 50 percent chance of the medicine becoming ineffective, Bolan says. That means if someone taking two doses daily skips just two portions a week for a sustained period, the risk of the medication’s failure increases by half.
“There’s a basic existential truth about human beings: we don’t remember pain very well. We burn out on it,” Bolan says. “And the corollary to that is it’s really difficult to maintain a sense of crisis indefinitely.”
That’s especially true among those who are HIV-positive and started on medication before ever developing a disease associated with AIDS. The fear of sickness may become abstract and distant, tempting a patient to break the shackles of the day-to-day routine of drugs and their uncomfortable side effects. Some who benefit from the therapy will later decide to quit because they can’t stand the weight gain or because they subconsciously don’t want to deal with the specter of HIV anymore.
“The longer you go on and realize the treatments are a part of your life indefinitely,” he says, “the more you want relief from them.”
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artin experienced the medication complacency first-hand. “Initially, there were several times I missed the doses,” he says. “At that point, I hadn’t gotten sick, so I wasn’t really scared.”
He also experienced the depression often seen with HIV-positive patients. Khalsa helped by honing in on his mental health as well as his medical well-being. She prescribed an anti-depressant and made sure he got professional counseling.
“I’ve known her for years,” Martin says. “Now, my visits are not about going in and just getting a physical. It’s about connecting with my doctor.
“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.”
Steve Pieters agrees. He has drawn hope, trust and faith from his closeness with his doctor, Alexandra Levine, and her dedication to fighting HIV and AIDS.
“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. She always takes her anger and turns it into solutions.”
Pieters now 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 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” when dismissing him after an unremarkable physical examination and lab tests.
hough he faces life with optimism, Pieters admits the mental and emotional aspects of long-term survival are far from trivial. Depression and fear of relapse loom on the horizon. So does survivor’s guilt. He shares those concerns with Levine, who empathizes with the emotional strains of patients.
“At a certain point, I feel 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, Khalsa, Bolan and their colleagues keep fighting, hoping to prolong the lives of those with AIDS through medicine, research and caring friendships – as well as through pushing for prevention against the disease. Researchers at USC and across the nation explore possible vaccines for AIDS. And Pieters and Martin, like other long-term survivors, look 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.”
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