By David Brown
Washington Post Staff Writer
Monday, September 1, 1997
BALTIMORE -- We're back from the front lines now, away from the places where patients know their viral loads and CD4 counts by heart, and ask, by name, for drugs that aren't yet on the market.
Or could it be that this is the front line in America's war on AIDS?
Barbara Worrell leans forward in the chair of the examining room. In a while, when the methadone kicks in, she will lean back and put her head against the wall. The doctor knows he has to work fast. But not too fast.
The woman looks all of her 56 years. She carries a black, knobby walking stick. Her ankles, visible at the end of pink sweat pants, are slightly swollen. Human immunodeficiency virus (HIV) infection is just one of her medical problems.
The doctor, Chukwuemeka Ufomadu, begins with her medicines. She's on 10. He goes over them with her, making sure that what's in her inch-thick medical chart on his desk reflects what she's actually putting in her body every few hours, every day of the week. Of the three drugs intended to quell the virus in her blood, she can identify only one. This doesn't bother the doctor, who knows plenty of people who take a medicine for years without once being able to pronounce it correctly.
But the names, at this point, don't matter anyway. Ufomadu's seen the most recent lab test results. The three antiviral drugs aren't working. Soon, she'll be on three new ones.
"Today you are complaining of what?" Ufomadu asks her, the words short and musical in his Nigerian accent.
"I just feel chills all the time. And diarrhea."
"How long have you been having this new diarrhea?"
"It comes and goes. This time three weeks."
And so they proceed.
As much as anyone, Worrell represents the typical AIDS patient in the United States. Her problems are rapidly becoming the mainstream -- not the marginal -- problems of AIDS medical care, as well.
Last year, the proportion of American AIDS patients who were black exceeded the proportion who were white for the first time. The fraction who were women reached 20 percent, an all-time high, and more than double what it had been a decade earlier. The fraction infected through intravenous drug use was 26 percent, half-again higher than in the early years of the epidemic.
Those groups -- blacks, women and IV drug users -- are poorer than the population of gay, white men who were the majority of AIDS sufferers in the 1980s, numerous studies have shown. They also tend to have less education, and are more likely to be without medical insurance, than people infected earlier in the epidemic.
Accompanying this demographic shift has been a revolution in the treatment of people with HIV disease. Three antiviral drugs (one of them usually from the potent "protease inhibitor" family), taken every day, can prolong the lives of most AIDS patients. This treatment can restore many to something approximating good health. Whether it can permanently halt the disease is uncertain.
What's certain, however, is that for "triple therapy" to make a big impact on the epidemic, it will have to work in people like Worrell, and at places like Liberty Medical Center, where she's treated.
Here, taking care of people with HIV involves not only physical exams, blood tests, prescriptions and return appointments. It frequently also means drug treatment and social work, free meals and bus tokens. It means picking up patients at home, getting to know their families and creating a spiritual milieu in which AIDS becomes only one of many problems to be overcome.
The hospital's AIDS clinic is called the Imani Center; the name comes from the Swahili word for "faith." Its clients are, almost exclusively, low-income black city people. Some are saddled with addictions or are suffering from serious illnesses apart from HIV infection. Many are chronically underemployed. Some frequently change residence or are in and out jail. Often, their knowledge of AIDS is slight.
Bringing triple therapy to the Imani Center's clients -- as to all AIDS patients -- comes at a price, and with some risk.
There's the literal price -- about $ 12,000 a year, on average, for three antiviral drugs and the lab testing that goes with them. There's the price in effort and psychic burden, for HIV-infected people can never forget their disease. On triple therapy, a person must take some pills twice a day and some pills three times a day. Some on an empty stomach, some when the stomach is full. For one of the newer, better drugs, one dose consists of six pills, twice a day. And the patient has to remember to put the bottle in the refrigerator in between.
The risk concerns the bad things that might happen -- to both the patient and other people -- if the rules aren't followed.
In an untreated AIDS patient, about 10 billion viruses are born each day (and a similar number die off). Triple therapy suppresses that completely, or nearly completely. However, if a person forgets to take the medicine, or decides not to, there's no lid on virus growth. It starts up again, and the viruses that manage to survive and multiply in such a situation are much more likely to be resistant to the drugs than if a person had said no to treatment in the first place.
When a person becomes a repository of such drug-resistant strains of HIV, the infection becomes harder to treat. But that's not the only problem. If that strain then passes to a second person, he or she may inherit all the difficulties associated with it.
At the moment this problem is theoretical. There are no recorded "outbreaks" of multiple-drug-resistant HIV traceable to a person who didn't take the medicine correctly. But few AIDS specialists are willing to say it couldn't happen.
For that reason, starting triple therapy involves issues of public health more than do most medical decisions. When a doctor prescribes three AIDS drugs, there's often a small voice asking: Could this patient turn into a public menace?
However, it's hard for a doctor to know what to make of a problem that abstract when there are so many concrete ones staring him in the face.
"You look kind of weak?" Ufomadu says to Worrell, trying to confirm today's impression of a patient who never looks particularly healthy.
"That's how I feel."
He's concerned about her diarrhea. It could be any number of opportunistic infections that plague AIDS patients with badly damaged immune systems. She's also a little short of breath -- or actually a little shorter of breath than usual. Is it pneumonia, or a worsening of the congestive heart failure brought on by longtime damage to her heart by drugs and alcohol?
These are the immediate problems. The physical examination may shed some light on them, but Ufomadu will also need to get a chest X-ray, a blood sample, a feces sample to figure out what's happening.
And then there's the HIV.
Worrell learned she was infected four years ago when she suffered a severe burn. An electrical cord was sparking and popping one evening in her apartment. When she leaned down to pull it out, her nightgown caught fire. "It must've been my guardian angel told me to get under the shower," she says now, genuinely thankful. She was in the hospital three months.
There's no telling when she actually got the virus. She used heroin for about 25 years. She speaks of her addiction in a flat voice -- no apologies, no excuses. Did she share needles? "I can say yes, because I'd be lying if I say I didn't." She didn't learn her boyfriend had the disease until after he died.
She's been on a methadone program about six months. Stopping heroin is the one thing that's actually made her feel better in recent years. She can't say the same thing about the antiviral drugs. Nevertheless, those drugs are the only hope for putting the brakes on her infection, which is rapidly going out of control. And like a lot of AIDS patients, Worrell has already gone through nearly half the medicine cabinet.
She was on AZT and ddI until a year ago, when she worsened, almost certainly because the swarm of virus in her bloodstream had developed resistance to that combination. Her doctor dropped the AZT and added two new drugs, stavudine and a protease inhibitor called saquinavir.
It's not possible ever to say for certain that virus growth has stopped. The best one can do is look for HIV in a sample of blood and find none. "Undetectable viral load" is the Holy Grail in AIDS treatment these days. Worrell is still seeking it. Triple therapy drove her viral load down from 210,000 viruses per milliliter of blood -- a volume equal to about one-fifth of a teaspoon -- to 30,000. Now it's back up to 180,000. Meanwhile, her CD4 cell count -- a rough measure of robustness of the immune system -- fell from 69 to 42. Normally, it's 800 to 1,000 cells per milliliter of blood. When it drops below 50, death can come quickly and unexpectedly.
Ufomadu knows there's a limit to the amount of pathophysiology he can teach his patients. At the same time, he knows he can't just tell them to take the drugs without giving them a peek into the black box. He's decided there's one concept every AIDS patient needs to know.
"We want to keep your cell count up and your viral load down," he says, emphasizing the phrases and the desired directions. Then he adds: "This combination of medicines is not doing what we want."
AIDS treatment is changing rapidly. One of the tenets of the new orthodoxy is this: If a combination of three drugs is failing, change at least two of them, which is what Ufomadu decides to do.
He choses a combination of stavudine, lamivudine and indinavir. The last is a protease inhibitor sold under the name Crixivan. He writes the prescriptions for the first two and goes over them with her -- names, doses, side effects. But for indinavir, it's not so easy. She won't be able to get it for two weeks.
Until very recently, indinavir was sold only by mail order, through a single pharmacy in Pittsburgh. Demand was so great that until a new manufacturing site was finished, indinavir's maker, Merck & Co., needed to manage the small supply of the drug to make sure none was wasted. There were forms to fill out, telephone calls to make.
Much of that work falls to Christopher Williams, the Imani Center's social worker. He's the one who turns a good idea into something that actually happens. AIDS care, added to poverty and social instability, is often too much for patients to handle.
"We have people who come in here," Williams says, "and their first concern is, 'Man, I want to get warm!' And then you fill their belly. Once that's addressed, then they might say, 'Oh, yeah, and I'm out of AZT.' "
He helps find housing for the patients and deals with their turn-off notices from the gas company. With Crixivan, the clinic actually acts as the pharmacy in about a fifth of cases. It gets the medicine and then distributes it to the patient, because the person either has no fixed address, needs help filling out the brief questionnaire that comes with each month's supply, or could benefit from additional instruction on how to take it.
When the first protease inhibitor arrived in December 1995, many people feared the poor or uninsured might never partake of the new era of AIDS treatment because they could never afford it.
There's no central record-keeping of what fraction of the roughly 900,000 HIV-positive Americans (one-third of whom are unaware of their infections) are on triple therapy. There's also no inventory of how many would like to be, but aren't. If the Imani Center's experience is typical, however, the number is very small.
Williams's office has a caseload of about 120 HIV patients, 60 percent of whom had no insurance when they arrived. There's never been one who hasn't gotten a drug a doctor prescribed. Sometimes it's through Maryland's AIDS Drug Assistance Program (ADAP). Sometimes it's through the state Pharmacy Assistance Program, which pays for medicines but not medical care for some low-income residents. Sometimes it's through Medicaid. At the beginning, though, it's often through the drug companies themselves, which give the drugs away free until until a patient gets on one of those programs.
"They may have been dropped from medical assistance [Medicaid] and be panicked about getting their meds. It's a relief to be able to tell them that we can get them for them," Williams says. "To be able to tell them, 'No problem,' that feels good. And it's a credit to the pharmaceutical companies that have these programs."
To many of the Imani Center's patients, however, the onerousness of AIDS treatment is just one of life's obstacles. It's nestled into a world of more pressing hazards.
Dana James is jittery and talkative as he waits for his appointment. He's wearing a red polo shirt and a baseball cap with a logo for a team he can't identify. He quit heroin six months ago, after a habit of 20 years. Now, at age 38, he's in his second trip through an outpatient rehabilitation program as he tries to find new friends, new meaning, new things to take up the time left by the departure of his ancient obsession.
James talks about the drug world, what he calls "out there," in a way that summons an image of deep space. It is airless, dangerous, and without the gravity that allows a person to get control of things.
"I was out there a long time. Your whole day consists of getting the drugs. Your whole day consists of getting that blast. I got tired of hurting my family, tired of going to prison. Mostly, I got tired."
He found out he was infected three years ago. He continued to use for quite a while. There was a voice saying: You are going to die, you might as well stay out there. But finally, he says, "I made up my mind that was a lie. I don't have to die that way."
There's a certain brittleness to this certainty, and the cracks in it are evident when Francine Brown calls him into the examining room.
She's the clinic's physician assistant, treating HIV patients along with Ufomadu. She is also -- more explicitly than he and many practitioners -- a spiritual guide, a parental figure, a purveyor of love and chastisement.
James has just been started on triple therapy. He failed double therapy. His viral load, 200,000 last October, for a while dropped below 4,000 on two drugs. It was back up to 106,000 in January. About that time he saw something about protease inhibitors on "60 Minutes," and came to the clinic asking for them. Today's immediate task is to check on the side effects of his new medicines and to draw blood for a new viral load and CD4 count.
But, of course, that's just part of the work.
"So you doing it like we told you?" Brown asks as she uses a chart covered with photographs of HIV pills to review James's drug regimen. "You have to do this like breathing."
"Right," he answers.
"Because even a day can make a difference."
"Because the virus is pretty smart." She stops and looks at his medical records. She speaks in a quieter voice: "Your urine on the 13th was dirty. Is that accurate?"
"It's a possibility." The heel of his right foot begins to move up and down off the floor. "I slipped once in a while. I think when I'm all by myself -- I needed some companionship, and go back to what I'm used to."
"You know that's an excuse," Brown says. "You are not alone. Please do not use that excuse to mess up. You're going forward. You are not going back. Because the first time I saw you, you were a pitiful-looking somebody. Don't you have any buddies?"
"They all out there."
"I don't mean those buddies. Don't you go to NA [Narcotics Anonymous] meetings?"
"I haven't found anybody like that yet." The foot is bouncing wildly with nervousness and shame. "I just beat myself for that one day."
Brown knows she's gone far enough. "Don't kick yourself too much," she says to her patient. She adds, "I'm real pleased to hear you're taking your medicine properly."