By Justin Hayford
I'LL TELL YOU WHY I'm not taking my medicines today," says Sonja, lighting up a Marlboro and settling into one of the few pieces of furniture she owns, a fuzzy green sofa she bought last week at a hotel liquidation sale. "I'm not taking them because a couple of days ago I woke up and saw spiders all over the walls of my apartment. I had to close my eyes and wait for them to disappear."
Sonja has AIDS. Among the half dozen drugs she's decided not to take today is ritonavir, a powerful new protease inhibitor. Pills just like the ones Sonja tosses into my lap in disgust appeared on the cover of Newsweek last fall, dramatically lit underneath a bold teaser: "The End of AIDS?"
And according to an article in Time, "Everywhere they turn these days, doctors and patients are hearing good news about AIDS." The magazine even named Dr. David Ho, one of the leaders in protease inhibitor research, as its man of the year. Ever since July's International AIDS Conference in Vancouver, when the results of many small-scale protease inhibitor studies were announced, it's been difficult to avoid stories in the press of people putting on weight, checking out of hospices, returning to work, or going back to bodybuilding, thanks to these drugs.
The AIDS crisis, so the story goes, is just about over.
But people like Sonja are conspicuously absent from that story. For her, and thousands like her, protease inhibitors bring their own sets of crises. Since starting on the drugs six weeks ago--a regimen consisting of about 20 pills a day with an annual price tag of around $15,000--her life has become much worse. And seeing spiders isn't the half of it. "When I first took the drugs, I thought I was going to die," she says. "Really. I spent the first two days in the bathroom. I had to buy an extra phone cord so it could reach."
Within an hour of taking her dose--six oversized white capsules of ritonavir twice a day, along with two other antiviral medications, a prophylaxis against pneumonia, an antidepressant, and an occasional Tylenol 3--she's hit with severe nausea, diarrhea, and fatigue. When she ventures out of her apartment, she's out of breath after walking two or three blocks. "Sometimes I can't even leave the house," she says. "It's too embarrassing to have to go throw up or have diarrhea.
"It's always one end or the other."
Sonja isn't surprised that the drugs make her sick. For one thing, her doctor warned her about such symptoms. "I've heard a lot of horror stories from people whose doctors didn't tell them what to expect when they started the drugs," she says. "At least my doctor got me ready for it so I could cancel my plans."
Since being diagnosed as HIV positive a little more than a year ago, Sonja has had a hard time tolerating whatever drugs her doctors have prescribed. She says she's just about ready to give up. She learned she was infected in January 1996 while in jail, where she was serving six months for drug possession. The doctor immediately put her on a combination therapy of two antiviral medications, a regimen that was switched three times before her sentence ended, either because the drugs weren't working or because Sonja developed such severe migraines and fatigue that she couldn't stand to be on them any longer.
Since then, she says, her medications have been switched five times. One of her kitchen cupboards is stuffed with pills she has stopped taking.
"I'm taking all this shit that makes me feel like crap," she says with a laugh. "And I'm supposed to take my ritonavir with food, even though it makes me throw up, so how much sense does that make?" She takes a long drag from her cigarette as though drawing sustenance from the smoke. "I didn't go through anything this bad even when I was doing heroin. And the thing is, ever since I started on these drugs, I've had a lot more thoughts about relapse. I know I can go out and get a bag that will make me feel good. I mean, I know what that will lead to, and I don't want that. But it's even in my dreams."
Sonja understands that by skipping her dose today--not the first time she has done so--she runs the risk of developing resistance, making the drugs ineffective against the HIV in her system. She also knows that the symptoms she's experienced for the past six weeks are likely to diminish as her body learns to tolerate the daily, massive infusion of toxic drugs. She already feels better than she did two weeks ago. But like so many people with HIV, Sonja has been worn down by a life of recurrent chaos and crisis: raised in foster homes, hooked on cocaine by 16, hooked on heroin shortly thereafter.
Two of her children were taken from her by authorities, and she voluntarily surrendered the third for adoption. She ended up in prison, then spent nine months in a shelter concurrent with nine months in a drug-rehab program and seven months battling Social Security to get her disability benefits. Now, finally, she has a bit of stability in her own clean, quiet apartment. She finds herself living a life she never thought possible, and these days are so precious to her that she wants to enjoy them without the fear of throwing up on a street corner every time she leaves the house, even if that means surrendering 10 years of her life.
"You've got to think about quality as opposed to quantity of life. You know what I mean? I don't take drugs, I feel great. So right now I'm wondering if they're worth it."
THE SUCCESS of protease inhibitor therapy is the subject of intense debate among AIDS service workers. "I have some patients who do well [with protease inhibitors]," says Judy Dunn, the nursing-care coordinator at Face to Face: Sonoma County AIDS Support Network, "and I have others who have failed and who are on all different kinds of other things to stay healthy until something else comes along.
"In some instance, folks have quit because of the quality-of-life issues, though two of them have decided to start again because it's even scarier to die."
Certainly, protease inhibitors--which will be the subject of a day-long AIDS conference in Santa Rosa on Nov. 3--have produced dramatic benefits for some. "We all have our miracle patients," says Dr. Richard Novak, a virologist with the University of Illinois at Chicago's HIV clinic. One of his miracle patients once suffered from multiple infections and severe weight loss, his T cells bottoming out at 16 (an AIDS diagnosis comes when T cells fall below 200; an intact immune system typically has 1,000 or more). Triple-drug therapy including a protease inhibitor brought his T-cell count up to over 350, and all his symptoms disappeared. He now has a new lease on life.
Information on the upcoming HIV conference.
As John Weekly, who runs a support group for gay men with HIV, points out, "I read there are about 100,000 people on protease inhibitors right now. But look at the total number of people with HIV or AIDS in the nation [estimated near a million]. We're talking about a small percentage who are on the drugs. And how many of the people on the drugs are developing resistance or can't tolerate them?"
In most of the protease inhibitor studies around the country, resistance develops in 10 to 15 percent of research subjects. Dr. Philip Loy, a biophysicist with American Viatical Services in Atlanta, has completed medical reviews of some 4,000 people on the drugs. He estimates that 30 percent of these patients become intolerant to one or more medications, while another 15 to 25 percent fail to adhere to the drug regimen.
If his sample is representative of the larger population of people on protease inhibitors--and his sample is three times larger than the largest clinical study designed to test the drugs' effectiveness--then these drugs may fail in half of the people who take them.
If you want to see Weekly bristle, suggest to him that protease inhibitors will make AIDS as manageable for the men in his group as diabetes or hypertension, comparisons used repeatedly in the media. "How many people are fired from their jobs, or kicked out of their apartments, or abandoned by their families because they're diabetic?" he responds immediately. "How many people are told that diabetes is their own fault? How many people have had their lovers break up with them because they're hypertensive? Are protease inhibitors going to solve all these problems, too?"
In Weekly's view, the recoveries he sees in his group can be credited to class and culture as well as the pills. "The guys are all white, they all have primary physicians who are HIV specialists, they're all hooked up to support systems, and they're all self-motivated people, the kind who see an ad in the paper and call right away. They're not representative of a lot of people with HIV.
"I feel like they are the exceptions."
Jeff, then, is an exception to an exception. Like the men in Weekly's group, Jeff is white, gay, self-motivated, and well connected. His primary physician is one of the most highly respected AIDS specialists in town. Though Jeff is on disability leave from work, his employer has agreed to keep him on the company's group insurance plan "in perpetuity," a highly unusual arrangement that pays for all of Jeff's drugs. He lives in a comfortable high-rise condominium light years from Sonja's low-income unit.
Protease inhibitors have worked for Jeff--sort of. Ritonavir, in combination with the older antiretrovirals d4T and 3TC, has brought his viral load down from 460,000 to 8,000. And there it stays. His T-cell count has risen from a dangerously low 65 to a slightly less dangerous 200. And there it stays.
"For me, the drugs represent a freezing of the situation, rather than being the cure or the answer," he says. "I am not improving as much as other people are improving. And at any time the infection could break through and the bottom could drop out."
He started his triple-drug therapy in November 1995. When I met him the following summer, he was pale, thin, barely spoke above a whisper, and had the first telltale signs of the AIDS face rarely described in the press these days--his skull slowly rising to the surface. Now, nine months later, Jeff seems a different person--sturdier, more animated, filled out. With the dramatic reduction in the amount of HIV in his system, he says, much of his former energy has returned. He's even able to work out and swim, activities he thought he'd given up for good a few years ago.
But Jeff can't entertain thoughts of returning to his former life as a graphic artist and art director, in part because, like Sonja, the drugs' side effects hit him hard. "The first time I took it, it was like my body screamed," he recalls. "I felt this weird chemical rush, and within an hour I was running to the bathroom with diarrhea. It's a stomach killer, the drug is. What we ended up doing--my doctor and I, because I got so sick on it --was cutting back to one twice a day, then two twice a day, and gradually building up to the six.
"But still I don't have a normal GI system. I constantly have acid indigestion. It's really worth it, for what the drug has done for me. I know I wouldn't be alive today without it. But you always know that the drug is in your system. I have diarrhea. I chew Tums constantly."
Moreover, Jeff can no longer take medication for depression, something he has battled off and on since long before he was diagnosed as HIV positive. His antidepressants are strongly contraindicated with ritonavir. For now he's coping well. But he's worried. "I'm really not a very stable guy," he says with a disarming laugh.
Jeff was one of the first people to get on protease inhibitors after they were approved by the FDA. "My health was pretty stable with d4T and 3TC the year before. But my doctor was anxious. That whole year, he knew the protease inhibitors were coming. He said, 'They're coming out soon enough so we can hold on. But as soon as it comes, we're going to do it.'"
It turns out that such fast action may have left Jeff at a disadvantage. "We now know that it's best to start with two new drugs," he explains. "In other words, I was on d4T and 3TC, and my doctor added ritonavir. It would have been smarter to change the d4T to another drug like ddC or ddI and add the ritonavir. But no one knew this back then, and in the rush to get people on the drugs, they just did it. Looking back, a lot of people have similar regrets to mine."
Failing to change two drugs in his cocktail may account for its diminished success, a reality that hit home in January when he was flipping through the New York Times. Graphs accompanying a front-page article titled "With AIDS Advance, More Disappointment"--one of the only stories to profile people for whom the drugs don't work--charted three case studies of people on protease inhibitors. The cases were labeled When Therapy Works Well, When It Works Somewhat, and When It Fails.
Jeff saw himself reflected almost perfectly in the second case, right down to a nearly identical T-cell count and viral load. "It was the first time I saw on paper that things aren't as good as they could be," he explains. "And then the doctor starts talking about if the viral load starts going up, what do we do? Which sounds to me like any day it can break through. So I'm just sitting on pins and needles about that, and feeling like I've got a little more time, how much I don't know, maybe two years."
With so much uncertainty, one of Jeff's biggest problems is sticking to his drug regimen. Like Sonja, he takes six huge pills twice a day--pills that smell and taste terrible--always with food, along with two smaller pills.
"It's not just the AZT popped in the mouth like it used to be," he says. "Now it's a major event."
THE EXPERIENCE OF TAKING so many pills with such irritating side effects every day has begun to overwhelm everything else in his life, as he articulated in a recent painting. Spread across the canvas is his dosage blown up to monstrous size, and behind the pills lurk tiny emblems of his former life. Books lie half visible behind a huge capsule. A male dancer in the middle of a joyful leap is almost completely obscured.
In the center of the painting the Dalai Lama sits in a lotus position, his head blotted out by a gargantuan ritonavir. "That's what it's like for me. It pervades everything."
It's a sentiment Sonja knows well. As she wrote in a diary recently, "Every time I take my medication it's a constant reminder of my limitations. Days like today I just lie around and dream I have a normal life. I'm sick of taking medicine. Great life--I have no life!"
Even without troubling side effects or an uninspiring prognosis, compliance with such a demanding regimen can be difficult. Just ask John. He's perhaps the ideal candidate for protease inhibitors. Not only is he an organized, self-motivated person with a solid career, good insurance, and a stable home life, he started on the new drug cocktail almost immediately after becoming infected. If the ultimate goal of protease inhibitor therapy is to eradicate the virus from the body, John is in the perfect position for success, since HIV had almost no time to replicate before being suppressed by the drugs. Currently his viral load is undetectable.
John takes a protease inhibitor called indinavir, along with 3TC and AZT. He tolerates the drugs well, though he started protease inhibitor therapy last July on a different drug that crippled him with diarrhea, vomiting, and extreme anxiety for seven and a half weeks. "I got to a point where I thought, 'I don't care if this is going to save my life. I don't want to live like this,'" he says.
After skipping two doses--just looking at the pills turned his stomach--he asked his doctor to change his prescription.
Now, instead of eight pills twice a day, John takes four pills every eight hours. But even without side effects, holding to the regimen is trying. "The papers all say that the regimen is difficult," he says, "but people have no idea. First of all, I have to take the drugs at 8 a.m. 4 p.m., and midnight, every day, without fail, for the foreseeable future. And I have to take them two hours after eating, when my stomach is empty, and I can't eat for another hour after I take them. So that means I have two three-hour periods every day when I can't eat. I can have maybe a piece of toast or a cracker; that cuts the absorption rate to about 98 percent. If I take them on a full stomach, the absorption rate is only 23 percent. So what happens?
"It's three in the afternoon, I'm at work, it's somebody's birthday, and there's a cake. That's too much fat, so I have to say no thank you. It's a little thing, but little things like that add up, they intrude into your life all the time. Your life is not your own.
"My job has very regular hours. But what do you do if you're a flight attendant, or a construction worker, or in a business where your schedule isn't set? I know a doctor who told me he won't prescribe protease inhibitors to one of his patients who is an attorney, because the patient's schedule is so hectic. What if you're homeless? Where do you refrigerate your drugs?
"And here's the thing. I have supportive friends, a supportive lover, a supportive work environment. In my office, I can pop pills or run to the bathroom whenever I need to. I'm a very organized person with a very scheduled life. And I'm sitting here with 1,477 T cells. If it should be easy for anyone, it should be easy for me."
But John admits that the temptation to skip dosages is real. "Some days I just don't want to put up with it. I don't want to be reminded that I've got HIV."
THE BETTER PROTEASE inhibitors work, the more likely people are to skip doses. "The problem is, people who are asymptomatic don't reliably take medicine," says Dr. William Paul, a virologist specializing in the treatment of AIDS. "From poor, homeless people to doctors and nurses. Research shows that it's quite common to have up to 40 percent of individuals miss their prescribed medicines."
And skipping even a few doses of protease inhibitors can allow HIV to mutate into a strain resistant to those drugs.
Non-compliance with protease inhibitors' demanding regimen stands to create an even more menacing health problem, if history is any indication. Thirty years ago Americans were led to believe that the TB crisis was over, thanks to multidrug therapy. That regimen is not nearly so difficult--and not a 10th as expensive--as the new AIDS cocktail. According to Paul, the standard course of treatment for an uncomplicated case of TB is four different antibiotics taken for two months, then two antibiotics for the final four months. These drugs typically do not produce any serious side effects.
Yet owing in part to people's inability to adhere to this regimen, the tuberculosis bacillus was able to mutate into strains resistant to these drugs, leading in the 1980s to the appearance of multidrug-resistant TB--a killer that we are nearly powerless to cure. A 1992 survey in New York City, one of the U.S. cities hardest hit by TB, showed that more than a third of the strains tested were resistant to at least one TB drug, and nearly a fifth were resistant to the two most powerful TB drugs, rifampicin and isoniazid. According to the World Health Organization, cases of TB in New York City have increased by 150 percent since 1980. With protease inhibitors the problem stretches beyond non-compliance. Some people develop resistance to the drugs even while complying perfectly.
If resistance to one protease inhibitor develops, people can sometimes switch to another (four are FDA-approved). But those who develop a resistance to one protease inhibitor may have developed a resistance to all of them. A recent European study suggests that taking the antiviral 3TC may promote the development of HIV strains resistant to protease inhibitors. One activist who recently started on the cocktail confides, "Someday we'll figure out that we're all just growing mutant HIV in our blood."
And resistant strains of HIV, which are already developing, will most certainly spread. Currently about 10 percent of new HIV infections are from AZT-resistant strains of the virus, suggesting that some people on AZT are still engaging in unsafe sex.
And given the reports of protease inhibitors' success in all but eliminating HIV from the body, there is every reason to believe that condom use will fall along with viral loads.
Many HIV workers agree that some men are using the news about protease inhibitors as justification for reducing condom use. One says he has encountered men whose concern about becoming infected has decreased because they believe that in a few years taking protease inhibitors will be as easy as chewing gum.
As the stories of people with HIV springing back to life spread, AIDS may begin to recede from our collective consciousness, just as TB did three decades ago. Perhaps this has already started. Mary Lake, a client services representative from Howard Brown, says, "I can't tell you how many people have said to me, 'Isn't AIDS over? I heard there was a cure.'"
It's hard to find anyone working in the AIDS service world who doesn't have a similar story to report. Recently Deborah Steinkopf, executive director of the Chicago-based Better Existence with HIV, met with funders who have given her agency several thousand dollars each year. This time they said they weren't sure they wanted to give any money. "They said they had read all this stuff in the papers about these drugs," Steinkopf recalls, "and they asked, 'Are you going to be around in a couple of years?' They were operating under the assumption that the kinds of services we provide--prevention education, counseling, case management--wouldn't be needed soon. Or at least wouldn't be funded."
"From a public health standpoint," Paul concludes, "the biggest problem may be declining interest."
It's nearly impossible to find anyone working in the AIDS service world--whether in social services, health care, or policy analysis--who believes that the AIDS crisis is anywhere near over. "Sure, there is good news out there, but the downsides are being hidden," says Steinkopf, echoing sentiments often expressed by her colleagues. "The focus in the press is always on people who are getting better. They are the only ones who are real."
And the only real problems, it seems, are those that medical science can address. For people on the front lines of the fight against AIDS, the epidemic is not only about T-cell counts and viral loads but also about fear, ignorance, and intolerance. HIV has created enormous rifts within American society and exacerbated others that already existed--rifts that no number of pills will heal.
Editor Greg Cahill contributed to this article.
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From the Oct. 30-Nov. 5, 1997 issue of the Sonoma County Independent.
© Metro Publishing Inc.