FEBRUARY 17, 1987. IT’S Tuesday after the long weekend and no one wants to be back at work, so the meeting starts a little late. This morning three people in white lab coats sit at the table. A reporter is also here, so everyone’s a little nervous. It isn’t often that someone who isn’t manifestly ill comes into this closed world from the outside.
The hospital AIDS team meets in this room every Tuesday morning, almost without fail, to review the inpatient list. In the beginning of the epidemic, when there were only one or two people with acquired immune deficiency syndrome in the hospital, there wasn’t any need to consult on a regular basis. But by this time last year, on any given week, there were a dozen or more AIDS patients in the hospital in addition to many more being seen in the outpatient clinic, so the team was formed to advocate for them. Now there are routinely more than two dozen names on the weekly inpatient list and the epidemic shows no signs of peaking—not here at least, among the poorest of the poor. Here whole families have died of AIDS.
The team meets in the Infection Control unit on the seventh floor in a large room with four desks that are usually occupied by nurses. There’s a bulletin board covered with greeting cards, printed notices, and a bumper sticker that reads “Infection Control Nurses Get The Bugs.” Like many of the staff rooms in the hospital, this one feels claustrophobic. There are only three portholelike windows high up on the wall and they can’t be opened. Little light penetrates. It could easily be dark outside. It is 9:40 a.m.
Judith Lieberman, clinical director of the Infectious Disease service, leads the meeting. The others sitting at the table are B.C. Gerais, a pharmacological psychiatrist, and Robert Carter, a social worker. The team is short two members. The nurse assigned to it full time is on leave and, because the pay is low relative to that at a voluntary hospital, no one has yet answered the advertisement placed in the papers some time ago for an outreach social worker. The Catholic chaplain, Sister Fran Whelan, is a sixth, ad hoc member of the team. Sr. Fran has been working with AIDS patients since the beginning of the epidemic—in fact, she was the only one visiting them for some time. Sr. Fran does a lot of bereavement counseling.
Head down, elbows on the table, wearing a button that reads WASH YOUR HANDS, Dr. Lieberman plows through the patient list, taking each in turn, reciting facts and figures, exhibiting uncanny if not total recall of the circumstances of each case. Dr. Gerais—a petite, irrepressible woman, called Babe by her friends—sits next to her making notes on three-by-five cards imprinted with patients’ names and hospital registration numbers.
Today the list consists of 23 names with chart numbers, admission dates, room numbers, and diagnoses, recorded on a form in neat black Palmer penmanship and photocopied for the team early this morning.
Almost invariably, the column headed “Diag.” on the list simply reads AIDS, but in a few instances it reads R/o AIDS because some patients are waiting to find out if AIDS can be ruled out in their case. The majority of AIDS patients on the list have pneumocystis carinii pneumonia—and for some reason, February is a peak month for pneumonia—and/or opportunistic infections like crypto-coccal meningitis, centomegalovirus, and toxoplasmosis. These are AIDS-related infections that sometimes went unrecognized and undiagnosed a few years ago—patients were dying so quickly—but were included in the revised 1985 Centers for Disease Control definition of AIDS. Dementia, an illness similar to Alzheimer’s disease, and emaciation, a wasting away, are now considered by doctors virtually to define AIDS as well.*
There are no transfusion-related or hemophiliac cases on the list—few, if any, are ever seen at this hospital. And only a small minority of patients in this hospital displays the skin cancer, Kaposi’s sarcoma, that was at first a primary indicator of AIDS. Kaposi’s sarcoma is still most often seen in homosexual males, and now—for some reason—less frequently at that.
Most of the people with AIDS in this hospital have a history of intravenous drug abuse. The staff calls them IVDAs. These patients got the so-called AIDS virus from sharing contaminated needles. Other AIDS patients here were their sexual partners or children. They acquired their HIV—for human immunodeficiency virus—infection via sexual intercourse, in the womb, or during birth.
Four patients who have been diagnosed with AIDS-Related Complex, or ARC, have been placed on the list, yet the list doesn’t represent the total number of AIDS-related cases in the hospital. Between 70,000 and 97,000 New Yorkers have ARC, over seven times more than have AIDS, but six years into the epidemic, ARC still constitutes a vast, shaded area of diagnosis.
People who never reach the point of an AIDS diagnosis can die from diseases associated with HIV infection anyway. Endocarditis, for instance, is a heart disease often seen in drug addicts. A full 90 percent of endocarditis patients in this hospital also have candidiasis, or oral thrush, a good indication that they are immune suppressed. If those patients were added to this morning’s list, there would be twice as many people on it. Even in 1987, the full ramifications of HIV infection are not yet fully appreciated. For example, three of the ARC patients on the list today have TB—epidemiologists speculate that HIV infection accounts for the first rise in the incidence of tuberculosis since 1953. Chronic renal failure is also emerging as another, more subtle byproduct of AIDS.
The list has all the ingredients of a soap opera:
One woman with AIDS was discharged over the weekend because hospital police found vials of crack on her.
One man with AIDS can no longer recognize his sister.
One woman with AIDS who is ready to go home can’t because her daughters, addicts, threatened to harm the home-care attendant when she came to introduce herself.
One man with AIDS walks around the ward, wheeling his intravenous stand along with him, socks crammed with cash.
Dr. Lieberman plows through the list.
Not infrequently Dr. Lieberman looks exhausted, and today is no exception. For one thing, she’s due at the dentist’s for root canal work. But if you were to ask her directly, Dr. Lieberman would willingly admit that the job is getting to her, too.
Dr. Lieberman is under a lot of stress and much of it is simply due to “the system”—the great, amorphous, many-tentacled system that holds her hostage along with everyone else in the hospital. Like everyone who works inside the system, Dr. Lieberman is constantly frustrated by it and fighting against it. The system sees to it that patients’ charts disappear, that specimens are lost on the way to the lab, that sometimes obtaining a necessary service or commodity from another part of the hospital depends mainly on the goodwill—and skill—of individuals.
Mr. Husseni, for example, is recovering from pneumocystis pneumonia, but lately he’s been exhibiting certain personality changes. The other day, Dr. Lieberman was able to persuade him that the diagnostic spinal tap he had long refused to permit wouldn’t hurt too much. She promised him it would be easy but it wasn’t. It was very difficult. His spine was clenched tight and the interns just rammed the needle in through the vertebrae. Mr. Husseni screamed in agony throughout. As an intern herself, Dr. Lieberman developed a shell, and she moves about the hospital inside it, but she still can’t stand to hear a patient scream.
The system can be almost diabolically unresponsive to patients with AIDS. Technicians are preparing to perform a crucial liver biopsy. The patient coughs. They refuse to stay in the room. The distraught 11-year-old daughter of a dying woman can’t get counseling. The child psychiatry department hasn’t yet perfected its policy on children of patients with AIDS.
Sometimes you can only laugh.
Of course AIDS is not the only fatal disease in the hospital. Many patients die here of cancer or liver disease from alcoholism. But Dr. Lieberman did not train to be an oncologist treating cancer patients. In fact, she deliberately chose infectious diseases as a specialty because she wanted to be able to make people well. She certainly did not expect to see people in her care die in such numbers—only three other city hospitals have more AIDS patients than this one.
In addition to her hospitalized patients, Dr. Lieberman sees outpatients in the weekly parasitology clinic—no one wants to call it the AIDS clinic—so each week she’s in contact with lots of people who have AIDS. Dr. Lieberman is in her thirties. Since people with AIDS are on the average from 29 to 35 years old, many of her patients are her contemporaries. Just as she does, they have family concerns, concerns about money, surviving in New York. Some of them, she knows, are felons on the street. But the hospital is a leveler. Naked, sitting on a table in the examining room, under the white glare of fluorescent lights, waiting for the doctor, perhaps fearful, a man or woman is most vulnerable, most human.
Dr. Lieberman likes her patients almost without exception. They aren’t objects to her. They’re people. She gets to know each one of them intimately. She also must daily live with the fact that she will usher many of them with AIDS in and out of the hospital time and time again—until the end comes.
The problem of burnout among doctors, nurses, and other health-care workers in the hospital who have to face a seemingly endless procession of deaths from AIDS is not often confronted directly. Like everyone here who treats patients with AIDS, Dr. Lieberman has learned to rely on sharing her feelings of grief and anger with colleagues. Sometimes, in order to continue functioning, she must simply set feelings aside, like a letter from the I.R.S. you put off opening. If she allowed herself to cry as often as she felt like crying, she would be crying a lot of the time.
Dr. Lieberman routinely has success treating the opportunistic infections that initially accompany AIDS, with medications like Amphotericin-B, Septra, and Pentamidine. She can buy time for patients. The experimental drug AZT, much in the news at present, has given doctors new hope. Though toxic, it seems to arrest the spread of the HIV virus and has clearly shown promise among a few categories of AIDS patients. Nevertheless, Dr. Lieberman knows that she will probably continue to be a relatively helpless witness to her patients’ decline and demise for many years to come.
There are no routine AIDS cases. Today, for instance, the list is full of anomalies. One man on the list will die this afternoon, presumably of an infection generally considered treatable nowadays. In the absence of this underlying, incurable immune deficiency, such cases might have represented unusual, even stimulating challenges to Dr. Lieberman and her colleagues—including the young residents under her supervision who earnestly sweat through Socratic instruction over a stack of pink patient status sheets with her during weekly rounds. But in the shadow of AIDS, this reading of the weekly list sometimes resembles a macabre bookkeeping chore more than it does the practice of medicine.
So Dr. Lieberman plods on.
Part of her problem is semantic. What should she call an alien, untoward abscess that has emerged out of a wasted body like a special effect in the movies? Resorting to euphemisms is an inescapable tic. This morning she calls it “something weird.” General deterioration, fever of unknown origin, empirical diagnosis.
Dr. Gerais is at least free of that burden. Dr. Gerais knows psychosis when she sees it and her pharamacopia is ample. With a single injection Dr. Gerais can knit up the raveled sleeve of care until it unravels again. Dr. Gerais must only listen. Last weekend, for instance, she spent an hour listening to Mr. Cintron, who she discovered liked best to be called Roberta. Mr. Cintron was in the early stages of a sex-change when he came down with AIDS. He is very weak but his spirit is strong. When Dr. Gerais asked him if he had a lover, he snapped back, “I can’t be in love now, my machine is out of order.” Mr. Cintron’s family—his mother, his brothers and sisters—has rallied around him and they all visit him in his room. He is “she” to them, too. In his cross-dressing days, Mr. Cintron was a prostitute. “Name it and I did it,” he told Dr. Gerais last weekend. Probably, this is how he contracted the HIV virus, and possibly passed it on to others.
In some ways, Dr. Gerais has a pleasant enough job. Her patients are often anxious, for example, that she like them, because many of them are drug addicts accustomed to getting what they need through manipulation, not the kindness of strangers. Typically, they are demanding, immature, and needy. Many of them are clever, witty, verbally adept people who are only too pleased to wisk her along in a breakneck, sometimes electrifying circuit through the corridors of their psyches. Of course Dr. Gerais is also accustomed to listening to long, tedious, self-justifying monologues riddled with delusion. Mrs. Thomas, for example, the mother rendered homeless by her addict daughters, presents herself as a frail wraith at the mercy of circumstances beyond her control. Actually, she’s a strong matriarch and a longtime drug abuser who, though desperately ill, disappeared from the hospital last December and returned, high, hours later, saying she’d been out doing some Christmas shopping.
Sitting across the table from Dr. Gerais, Mr. Carter keeps his place on the list with the point of his pen. Owlish behind eyeglasses, Mr. Carter reads the paper systematically, front to back, every day. He begins with the national news on the subway in the morning and finishes with the arts pages at home. No less methodical about his work, he has already been through the activity log this morning to update his records—he keeps entries on each patient in a big black three-ring binder and weeds out the discharged or dead every few months. Slightly stooped, world-weary, Mr. Carter has worked at the hospital a year and a half now, always with AIDS patients. Before coming here, he was a psychologist in private practice. But he felt isolated, and friends of his had died of AIDS, so he sought out this job. He doesn’t make an effort to hide it, but not many people here know that Mr. Carter is a Jesuit priest. Social work is just the most recent in a series of callings. For Mr. Carter, “the list” is perhaps the latest of God’s more inscrutable texts.
Mr. Carter runs an outpatient group during clinic on Wednesday afternoons and an inpatient group on Fridays. He visits patients. But much of his time is spent on the phone, making referrals and trying to secure services for his clients. More than once, he’s at last located help for a patient only to find he’s no longer able to locate the patient.
Mr. Carter, too, has listened to his share of pathetic testimonials. As he well knows—since it’s his often futile task to “follow” patients into the real world—addiction in one form or another permeates this part of the city, the community devastated by it, the hospital itself. Addict patients keep leaving against medical advice, to get a fix. Sometimes they argue, sometimes they just walk out, sometimes they check back in. Continuity of treatment is difficult if not impossible to maintain. Invariably, some patients who have been detoxified in the hospital go back to their habit on the street, where suicidal gestures are commonplace anyway. Some patients who are discharged from the hospital never appear in the outpatient clinic for follow-up care and reappear only in the emergency room.
Mr. Carter has listened to his share of deluded resolutions. No one, including him, completely trusts the addicts in their midst, and with reason. Hated in the community with a contempt bred of abject familiarity and fear, addicts in the hospital are a category apart from the other patients—in their own eyes, in the eyes of the staff, even in the eyes of their loved ones. And an addict with AIDS, even one flat on his or her back in the hospital, is somehow more contemptible than the neighborhood junkie shooting up downstairs in the hall. This is partly because addicts have passed on AIDS to their wives, husbands, and children—however innocently—and partly because, in this religiously conservative, overwhelmingly black and Hispanic community, AIDS is still thought of as a disease confined to homosexuals.
It isn’t, of course. Thus far there have been 31,000-plus cases of AIDS in the U.S. since the Centers for Disease control started counting in 1981 and blacks and Hispanics made up a disproportionate number of them. Although blacks and Hispanics comprise 20 percent of the U.S. population, 39 percent of those with AIDS nationwide now are members of those two minorities. Blacks alone make up 12 percent of the United States population but account for 25 percent of all AIDS cases.
Nine out of ten children with AIDS in the United States belong to a minority. According to the Centers for Disease Control, a black woman in 1987 is thirteen times more likely to be at risk of infection with the HIV virus than a white woman, a Hispanic woman eleven times more likely.
In New York City, black people make up 31 percent of AIDS cases, Hispanics 23 percent. But many black and Hispanic leaders are still reluctant to discuss AIDS. Some fear a backlash against minorities already victimized by discrimination and they don’t want to become identified with the disease. In addition, financial and other resources are scarce in their communities. Minority groups would have to struggle hard to match the social and support services marshaled by the gay community—which, like the Gay Men’s Health Crisis itself, is certainly not confined to but is largely defined by white, middle-class men.*
Intravenous drug abusers themselves account for fully 75 percent of AIDS patients in New York’s municipal hospitals. They make up almost 90 percent of so-called heterosexual-contact cases in the city. Around 37 percent of AIDS cases citywide now involve addicts and their heterosexual sex partners and/or their children. Moreover, new data suggest that AIDS among addicts has been underreported by as much as fifty percent. A recent review of deaths and illnesses among intravenous drug users in the city in 1985 indicates that typically where a death certificate specified endocarditis, pneumonia, or another illness that commonly accompanies immune deficiency, the actual underlying cause of death was AIDS. Numerous cases in this statistical population might have been incorrectly categorized.
As if responding to potent prejudices, the city’s social service system—inflexible, inefficient, worn out, reflecting a society weary of palliatives—has moved late to address the special problems addiction presents in relation to the epidemic. As it is with numbers of sexually active gay men transmitting the virus through intercourse, the numbers of addicts sharing dirty needles add up to a staggering rate of infection. There are over 200,000 drug addicts in New York City. That figure doesn’t include people who have been off intravenous drugs for as long as five years and might just be starting to exhibit symptoms of infection. The patients in the hospital today are the advance guard of a veritable army of HIV-positive potential victims of AIDS.
Public health education has come too little and too late for thousands of addicts. At present, the surgeon general of the United States seems to stand alone in the top echelons of the federal government in insisting that AIDS be treated as a medical problem requiring explicit education to prevent it, not moral nostrums. Mass public education on the efficacy of condoms has been on government’s back burner for years now. The propriety of network TV commercials for condoms is still being debated. In the meantime, increased media attention to AIDS again seems to have set off shock waves of fear, even among those least at risk in the heterosexual population. In the midst of this emotional, politically charged climate, public education aimed at addicts is not receiving the attention it merits—attention is diverted from it by squabbles over sex education in the schools.
Merely warning a drug abuser once or twice about the dangers of sharing needles is, in any case, a feeble weapon against the spread of AIDS. Addicts are by definition an impulsive group of people who ritually and for a variety of reasons share needles and syringes. The idea of dispensing sterile “works” to addicts is seductive in its simplicity, but in 1987, it is considered politically unfeasible, if not counterproductive from a public health standpoint.
“Just say no,” the slogan goes. But not many alternatives to addiction are available to drug abusers in New York. Drug rehabilitation programs are few and have long waiting lists for admission.
According to some estimates, between 1981 and 1985, mortality among IV drug abusers in the city increased an average of 30 percent. Given this, the sluggish response of government to the plight of addicts might be seen as some kind of “final solution to the addict problem”—although moral theologians would stop short of any comparison of the AIDS epidemic with the Holocaust, advocates for the welfare of addicted people aren’t so reluctant to make this equation. Since some of the AIDS-related maladies drug users suffer from especially still aren’t, as of February 1987, included in the definition of AIDS, they don’t officially have AIDS. They thus aren’t even eligible to receive Social Security disability payments.
As Mr. Carter is only too aware, his patients aren’t the only ones in the hospital at the mercy of the sometimes capricious vagaries of the social service system. He became a dependent of it himself the day he signed on at the hospital. He can’t help patients without it. But with its endless succession of forms, coupons, and Alice-in-Wonderland regulations, the Department of Social Services functions like a Ruritanian bureaucracy in wartime, and Mr. Carter is sometimes relegated to stretcher bearer.
Today—again—he’s going to try to get a wheelchair for Armando Santiago.
The meeting ends at 11 a.m.—but not before Dr. Gerais announces that she’s tendered her resignation. When Dr. Gerais was assigned full time to the AIDS service a few weeks ago, she promptly had her office in the outpatient clinic taken away. In fact, she came into work one day and found someone else sitting at her desk. Now she has no place to see patients or keep her records, and since no office is forthcoming, she’s going into private practice. (True to her word, Dr. Gerais left the hospital a month later.)
When Mr. Carter comes into the room, Carmen Baez is scrubbing the rails of Mr. Santiago’s bed with alcohol. There is a pink “precaution” sheet posted on the door to this room. Some nurses on the ninth floor put on a mask before they go in. Nurse Baez isn’t even wearing gloves. The housekeeping staff is supposed to keep the room clean. But Nurse Baez likes hands-on nursing. She likes to do as much as possible for her patients.
Dressed in a blue paper hospital gown with a paper sash at his waist, a brown knit cap perched on his head, Mr. Santiago is sitting in a chair. Grey stubble lines his jaw. When Mr. Carter comes into the room, Mr. Santiago’s face turns anxious.
Mr. Santiago has been in the hospital with toxoplasmosis, an infection that causes brain abscesses, since December 27. He’s well enough to leave now. He is waiting for his wife to come take him home but his wife hasn’t even visited since last week.
When Mr. Santiago came to the hospital, he was incoherent. On his first visit, Mr. Carter couldn’t tell what language Mr. Santiago was speaking. Then he didn’t talk for a week. Then gradually, he began speaking in Spanish. Then his wife showed up.
When Mr. Santiago’s wife comes to the hospital she smells of alcohol. It’s hard to get anything out of her. When she doesn’t want to answer questions, she begins to speak in Spanish. Before he came to the hospital, Mr. Santiago was living alone in a rented room without heat or hot water and his welfare case had been closed. But now, his wife says, she’s found an apartment for the two of them—although the last time Mr. Carter saw her she said she couldn’t remember the address of the new apartment. It didn’t have electricity, she said, but her brother was going to fix that.
Partly because he’s been in bed since December, Mr. Santiago’s muscles are atrophying and the people in Rehabilitation say he can’t go home without a wheelchair. Since Mr. Santiago can’t afford a wheelchair and hasn’t yet qualified for Social Security disability payments, Mr. Carter has been trying to tap into a special fund for wheelchairs. The wheelchair hasn’t come yet, but then neither has Mr. Santiago’s wife.
When Mr. Carter sent a letter to Mr. Santiago’s son at the address given to him by the son, it came back stamped “address not known.”
Everyone’s waiting for Mr. Santiago’s wife to come take him home. No one knows how to reach her. No one knows her at the phone numbers she’s given. Maybe she’s wandering from place to place. For a while she visited her husband regularly and even helped him do the movements Rehab prescribed. But maybe it finally sank in, what her husband has.
“Has your wife come to see you?” Mr. Carter asks Mr. Santiago.
No, Mr. Santiago shakes his head.
“Do you remember what we talked about, about Coler Hospital? Maybe I can help you get into Coler Hospital,” Mr. Carter says, speaking slowly and distinctly, “where they’ll give you better care than we can.”
Mr. Santiago looks uncomprehending.
“I’m still trying to get you the wheelchair,” Mr. Carter says.
Nurse Baez gets up off her knees. “You mind if I say something, Mr. Carter? You know, he doesn’t need a wheelchair. He can walk, can’t you, Mr. Santiago? I wondered—he’d be sitting in the chair and I’d come back in and he’d be in bed. I asked him, How’d you do that? And he said, Walked. Come on, Mr. Santiago.” Nurse Baez speaks to Mr. Santiago in Spanish.
She helps Mr. Santiago stand up. Since his limbs are emaciated, Mr. Santiago looks like a clothespin doll in the paper gown. Together they demonstrate—Mr. Santiago can walk.
“It’s not good for them to sit in a wheelchair,” Nurse Baez says. “Not if they can walk. I argue with the nurses, Don’t put the side rails up because the man is gonna hurt himself because he can walk and he’ll get out. Because he does.”
Seated now, Mr. Santiago listens to Mr. Carter and Nurse Baez discuss his problem. His head swivels back and forth from one to the other. Looking up at them, his eyes are frightened, searching.
In the bed next to the door there is a big, heavy black man with a huge growth on the side of his face. He is brain dead, on a respirator. His heaving coal-colored chest and stomach are bared.
* These diseases, with a confirming HIV-positive antibody test, were subsequently added to the official definition of AIDS effective September 1, 1987. In one stroke, then, the number of people recognized as having AIDS in the U.S. increased by 20 percent—to more than 41,000. Anticipating this statistical leap, the federal bureaucracy ruled in June that people with AIDS suffering from dementia or emaciation did not automatically qualify for Social Security disability insurance, although anyone with AIDS had before. Explaining the rationale behind this decision, one official of the Social Security Administration was quoted in The New York Times as saying, “They may be dying, but they might not be disabled.” The Government eventually reversed its ruling.
* The full extent of the epidemic among minorities in New York City will come into sharper focus later this year when the health department releases almost comically precise estimates of the numbers and kinds of people it figures are infected with the HIV virus. These will include 200,785 whites, 118,171 blacks, and 95,838 Hispanics.
The health department will estimate that there are 366,616 men and 48,178 women in the city infected with the virus—212,500 homosexual males, 37,500 bisexual males, 111,375 heterosexual men who use drugs intravenously, 30,000 women who use drugs intravenously, and 15,678 women who have been infected by male sex partners.