From the January 12, 1987 issue of New York Magazine.
It is five minutes to nine, and Dr. Donna Mildvan is waiting impatiently for an elevator at Beth Israel Medical Center to take her down from the tenth floor to the center’s Monday-morning AIDS clinic. Ten blocks uptown, in his lab at Bellevue Hospital, Dr. Fred Valentine is drawing blood from an outpatient who has AIDS. Down near City Hall, in a building that looks a great deal better outside than inside, Dr. Polly Thomas, a pediatric-AIDS expert at the New York City Department of Health, has two calls on hold and a public-health adviser waiting in her cramped cubicle to talk to her; on her desk sits the draft of a manuscript on AIDS.
Three more veteran AIDS fighters—Drs. Rand Stoneburner, Sheldon Landesman, and Arye Rubinstein—are in Atlanta, discussing with experts at the Centers for Disease Control (CDC) the need to broaden the definition of AIDS.
These doctors have been battling the AIDS plague since it appeared in the city—which, they now realize, was eight years ago. They work with a sense of urgency reinforced by each new case and each inevitable death. “New York is the North American epicenter of the disaster,” warns the city’s health commissioner, Dr. Stephen C. Joseph. “The impact of the AIDS epidemic on our citizens, our hospitals, and our entire city will be horrific.”
On this morning, other doctors in the city are laboring with the same intensity and motivation: They, too, have been fighting AIDS since it was a mysterious, unnamed malady. In his lab, Dr. Alvin E. Friedman-Kien is checking on the development of a test that may detect the AIDS virus in the blood sooner than the currently used ELISA test can spot antibodies to the virus. Dr. Warren D. Johnson Jr. has just come back from a week’s research in Haiti. The dean of New York’s infectious-diseases experts, Dr. Donald Armstrong, is on a site visit on behalf of the National Institutes of Health, evaluating a scientist’s application for a grant to study AIDS.
Other dedicated people, such as Dr. Mathilde Krim, co-chairman of the American Foundation for AIDS Research, raise funds for education and research, or, like the devoted “buddies” of Gay Men’s Health Crisis, provide support for the ill.
These doctors routinely work twelve- and fourteen-hour days. They stay in the war, although they see patient after patient die and other researchers have burned out and left. They phone one another regularly and meet often. Some gatherings are formal, such as the weekly Intercity Infectious Diseases Rounds and the Department of Health’s monthly AIDS meeting. Some are informal—two or three doctors discussing a problem, a possible approach, a joint study, or a joint paper. Remarkably, they collaborate across institutional lines and share information before publication. In the battle against an epidemic, there is no time for turf fights.
No one knows how many New Yorkers are infected with the AIDS virus. But, based on experience with the disease so far. Dr. Joseph estimates that by 1991, 40,000 New Yorkers will have developed AIDS and 30,000 of them will have died. Another 40,000 or more will have developed AIDS-related complex (ARC), a less severe form of the disease. That 80,000 represents more than 1 percent of the city’s population—and many more will have been infected with the AIDS virus. Studies suggest that 20 to 40 percent of people infected will develop AIDS within five years, and another 40 percent will develop ARC. AIDS will continue to increase in all risk groups, but a larger proportion of cases will probably occur in intravenous-drug abusers, their sex partners, and their babies.
And the situation is really grimmer than it seems, because, according to Dr. Joseph, the disease has been defined too narrowly; he believes that there are twice as many cases of AIDS and ARC as are now being counted. A broader definition would include other possible manifestations of the disease, such as endocarditis (a heart inflammation), tuberculosis, and nonspecific pneumonias, all of which are increasing among intravenous-drug abusers, as are other disorders, such as lymphomas. The Centers for Disease Control is now considering broadening the definition.
These frontline AIDS fighters are looking for better tests for the virus, for markers showing which infected patients will develop the disease, for information about how sex partners contract the disease and how mothers transmit it to their babies, for statistics predicting just how bad the epidemic is going to get, and for information that will determine how the virus causes immune deficiency. Most of them are also involved in patient care. Some of the treatments they have just begun using have given them a glimmer of hope.
’We saw our first AIDS patient in July 1980. He was a 33-year-old homosexual, originally from West Germany, who had lived for the past three years in Haiti, where he’d worked as a chef,” says Dr. Donna Mildvan, chief of infectious diseases at Beth Israel Medical Center. “He came to New York after he’d gotten sick in Haiti with weight loss and uncontrollable bloody diarrhea.”
At that time, no one had heard of AIDS—acquired-immune-deficiency syndrome—and none of the clues made sense. AIDS is caused by a virus that destroys the body’s immune system, leaving victims defenseless against opportunistic infections caused by ordinarily innocuous bugs (certain bacteria, parasites, viruses, fungi). The virus, previously called HTLV-III or LAV, is now called HIV—for “human immunodeficiency virus.” In the United States, it has so far affected chiefly homosexual and bisexual men, intravenous-drug users, people who have received infected transfusions or blood products, female sexual partners of infected men, and people from places—such as Africa and Haiti—where AIDS is usually transmitted by heterosexual intercourse.
In the chef’s stool, Dr. Mildvan’s team found amoebic parasites and other intestinal bugs that travelers often pick up in other countries. Dr. Mildvan and other New York doctors had found similar intestinal infections in many homosexual men.
“We treated him for the things we found, but he didn’t get better. That was extraordinary. For the next six months, he was in and out of the hospital. We’d get him a little more stabilized, he’d go home for a while, and then he’d be back. His weight loss continued, and he had intermittent diarrhea. He developed sores around the rectum, and then he began to lose vision in one eye,” she says.
What was it? The team ran every test they could think of. They spent hours in the library looking up obscure diseases. Nothing fit.
Antibiotics work against diseases caused by bacteria, not against diseases caused by viruses. AIDS, the common cold, flu, cold sores, genital herpes, hepatitis B—all are viral diseases, and very few drugs can touch them. Some antibiotics work by holding bacteria in check until the patient’s own immune defenses regain strength and take over. But what if the bug destroys the immune defenses?
“People who fear they’re infected may want to take the blood test, but testing positive poses an enormous dilemma. The person infected may end up having no sex life or suffer discrimination.”—Sheldon Landesman
These researchers did suspect that a virus might be the underlying cause of the patient’s problems. But Beth Israel didn’t have a virology lab. So Dr. Mildvan and Dr. Usha Mathur-Wagh took fluid from inside the patient’s eye and from his rectal lesions and sent the samples to a colleague, Dr. Ilya Spigland, at Montefiore Medical Center in the Bronx, which had a clinical virology lab.
He managed to culture herpes simplex type 2 (genital herpes 2) from the rectal lesions, and cytomegalovirus (CMV) from the eye fluid six weeks later. These were extraordinary findings. Both viruses are common, but they rarely cause disease of this magnitude. In fact, CMV had never been isolated and grown from a living patient with retinitis. Sometimes CMV had been found at an autopsy of a patient whose immune system was suppressed—by leukemia, for example.
“We treated the herpes simplex 2 with vidarabine,” Dr. Mildvan says, “but we had nothing for the CMV. It spread to the other eye, and he lost vision. Over the next couple of months, he deteriorated neurologically. CAT scans showed his brain had shrunk. He stopped talking to us. He curled up in a ball, staring blindly into the distance. He was incontinent. And he died. It was frightening and horrible in a 33-year-old man, and it had an unknown cause,” she says. “It was clear he had herpes. It was clear he had CMV. But why?”
Dr. Mildvan realized that as early as 1978 or 1979, she had seen homosexual male patients with lymphadenopathy (enlargement of the lymph nodes that help fight infection). But the patients weren’t sick. In early January 1981, exactly two weeks after the West German chef died, Dr. Mildvan saw a second patient with a similar problem. “He was a homosexual man in his thirties, a nurse with no history of travel. He was admitted with explosive Pneumocystis carinii pneumonia (PCP) and CMV infection. In ten days, he was dead,” she says. Pneumocystis pneumonia is rare, usually affecting only patients whose immune systems are severely compromised.
“That’s when it clicked,” Dr. Mildvan says. “I said to myself, I bet lymphadenopathy is an early form of this disease. And it’s a new disease. Something’s going on.”
The cause of the new disease turned out to be the virus now called HIV. Some patients with lymphadenopathy did develop what’s usually called full-blown AIDS. Whether the other patients with lymphadenopathy will also eventually develop the disease is not clear.
“Some researchers say a co-factor—such as another infection—is needed for AIDS to develop. Others say the only co-factor is time. I hope they’re wrong,” she says.
Dr. Mildvan, a small, 44-year-old woman with a mane of curly brown hair, is straightforward, unassuming, and has a warm, practical manner. What has kept her going, when the best she has been able to do so far is postpone the deaths of AIDS patients?
For one thing, she likes the challenge of finding an answer to an intellectual puzzle. For another, she has the hope that she and other doctors may be offering an effective treatment. The new drug azidothymidine (AZT) does not kill the AIDS virus, but it appears to inhibit its growth.
Dr. Mildvan’s team took part in the early double-blind trials for AZT efficacy. “We thought we saw improvements in patients.” she says, “hoped that the improvements were real, and were delighted to be proved right.” The trials were stopped when it became clear that patients receiving the drug were doing much better than those receiving a placebo.
AZT is now available on an investigational basis to patients who have recovered from Pneumocystis pneumonia. However, the drug is usually taken every four hours and may be needed for the rest of the patient’s life. And AZT has side effects. About a third of the patients experience anemia and require transfusions. Eventually, there will surely be newer, better drugs to slow or halt the virus, but at least now there’s hope.
Waging the war against AIDS may be easier for women than for men, Dr. Mildvan suspects. “Sometimes,” she says, “you shut the office door, hug each other, and cry.”
’People always ask when AIDS is going to spread to the general population, as they call it. That’s absurd. It implies that those who have AIDS aren’t part of the general population. It implies that they are giving it to us,” says Dr. Sheldon Landesman, 42, a lanky, talkative, thoughtful man who is always running his hands through his hair. He is coordinator of the AIDS research group at the State University of New York Health Science Center at Brooklyn (formerly Downstate Medical Center). “This is a sexually transmitted disease. It can be passed from man to man, from man to woman, from woman to man, from woman to woman. It’s a community problem, and everybody has to sacrifice something for the good of the community. What is peculiar is that in the United States, unlike Africa, it first affected gay men,” Dr. Landesman says.
“IV-drug users are overwhelmingly heterosexual, and they and their sex partners make up nearly half of the AIDS patients we see,” he says. “We used to call it Rikers Island adenopathy when we started seeing it in 1979 and 1980—enlarged lymph nodes in drug addicts who’d been imprisoned at Rikers Island. Then it got identified and named—AIDS and ARC.”
Having multiple sex partners increases the risk of getting AIDS, he stresses. “It’s like Russian roulette: The more partners, the greater the risk you’ll run into an infected one. Much has been made of the idea that anal intercourse is more dangerous than vaginal intercourse, but nobody’s ever shown that to be true.” However, he adds, the partner, male or female, who receives semen from an infected partner during intercourse is more likely to get the disease than one who gives semen.
Literature about AIDS suggests that having a blood test that is positive for the presence of AIDS merely shows “exposure” to the virus. “But,” he says, “that has no meaning. All the evidence clearly indicates that people who are antibody-positive are infected with the virus. It becomes part of the DNA of some of their cells. The infection may be latent, but it seems to be lifelong. They may shed more virus at some times than others, but everybody who tests positive is infected and potentially infectious to others,” he says.
Currently, a patient is diagnosed as having AIDS when he has been attacked by—among other things—an opportunistic infection (Pneumocystis pneumonia is one of them) or has had Kaposi’s sarcoma, a previously rare cancer. But Dr. Landesman speaks of a range of HIV infections, some of them having no symptoms.
“The AIDS we’re seeing today is a consequence of where the infection was five years ago. Current projections indicate that it’s only going to get worse in terms of the numbers infected, the numbers with the disease, and the costs,” Dr. Landesman says. AZT treatment is promising, he agrees, but the costs will be enormous. If one goes with the very conservative assumption that 400,000 Americans are infected with the AIDS virus, and only 10 percent develop AIDS and therefore need AZT treatment, that would mean that 40,000 people must take an expensive drug every four hours. Such treatment would cost tens of millions of dollars and entail nearly a million clinic visits a year (each patient must be checked in a clinic twice a month). What’s more, many AIDS patients have lost (or never had) health insurance. In New York, the Health and Hospitals Corporation, which runs municipal hospitals, is bearing the brunt of caring for the urban poor, and the money will have to come out of city coffers.
Another huge problem is the blood test for AIDS. “People who fear they’re infected may want to find out. But the reality of testing positive poses an enormous moral dilemma for the person infected. Many people, if their partner is infected, will cease to have sex with that person. So, if you’re honest and ethical, you’ll end up having no sex life. If you’re not honest, you may infect your partner.”
Furthermore, if the results of positive tests become known, people may encounter discrimination on the job, or have trouble getting or keeping an apartment or in getting insurance. At SUNY Brooklyn, where testing is available as part of a pregnancy study, “we give several hours of counseling to those who test positive,” Dr. Landesman says. Counselors, nurses, and residents are dedicated, but the cost in skilled staff time is enormous and growing.
Dr. Landesman’s group is studying HIV-infected mothers and their babies to find markers that will predict how great a risk an infected mother has of passing the disease to her baby. He believes the epidemic is going to get worse: “We’ll see an increased number of women with AIDS, especially among the urban poor, who got it from drug addicts. Poor women in particular will get the virus from men who used to use drugs. I can easily envision at least 50,000 largely heterosexual infected men active with noninfected women. If I could give advice to any teenage girl, I’d say, ‘If your boyfriend uses drugs, kiss him good-bye—on the cheek.’ “
“There’s nothing unique in Haiti that puts the people there at greater risk of getting the disease than other people.”—Warren D. Johnson Jr.
’There’s nothing unique in Haiti or in Haitian sexual practices that puts the people there at greater risk of getting the disease than other people,” says Dr. Warren D. Johnson Jr., chief of the division of international medicine at Cornell University Medical College. He spends a month or two each year in Haiti studying the natural history and transmission of the disease; the National Institutes of Health funds this work.
Why, then, is AIDS predominantly a heterosexually transmitted disease in Haiti? And what does that say about what may happen here?
Dr. Johnson, 49, a tall man with an easy manner, set up a treatment center in Port-au-Prince—along with Dr. Jean W. Pape and Dr. Ben Kean—under a grant from the Rockefeller Foundation. In late 1981, Drs. Pape and Johnson were asked to see adult Haitian patients with chronic diarrhea. Though all diagnostic tests were negative, the patients experienced severe weight loss—sometimes as much as 30 or 40 pounds—and most died within a year. A group of Haitian doctors began studying the problem. By 1982, they had seen more than 60 patients with this disorder. Did they have AIDS, the disease that was beginning to be diagnosed in the United States?
There were differences. The prevalence of opportunistic infections differed significantly between Haiti and the United States. And about half of the Haitian patients suffered intense, itchy lesions that nothing could stop—something seldom seen in people with AIDS in the U.S. “The other striking difference is the way the virus appears to be transmitted. Here, it’s transmitted primarily by homosexual men, IV-drug users, and a small number of transfusion recipients. But in Haiti, the predominant mode of transmission is heterosexual,” Dr. Johnson says.
Sixty percent of Haitian AIDS patients’ sex partners—men and women—are infected with the virus. Studies have not revealed why some female sex partners of men with AIDS became infected and others didn’t, Dr. Johnson says. Among those who were infected and those who were not, he found no difference in age, length of sexual relationship, frequency of intercourse, frequency of anal or oral intercourse, or in whether the women continued to have intercourse after the man became sick. The use of condoms was uncommon.
What does this mean for the U.S.? “When we cite numbers of AIDS patients in New York, we’re talking about people who were infected with the HIV virus two to five years ago. Five years ago, in New York and San Francisco, HIV infection was fairly restricted to homosexuals who were pretty much exclusively homosexual, as well as some IV-drug users. In Haiti, we see virtually no males who are exclusively homosexual. They’re almost always bisexual. So, if we imagine the virus being introduced in Haiti into a bisexual population, there was immediate opportunity for spread to the heterosexual community,” Dr. Johnson says. Thus, “Haiti could have a head start of several years” on heterosexual transmission in cities like New York and San Francisco.
“Heterosexual transmission could become the predominant mode here,” Dr. Johnson says. “We must act as if the same thing could occur here as in Haiti. We must educate people to those risks. If you take the opposite tack—that heterosexual transmission will always be relatively rare in the United States—and you’re wrong, then you’ll have potentially millions of people who are infected, asymptomatic, and continuing to transmit the virus.”
The day before we talked, Dr. Alvin E. Friedman-Kien and his colleagues had diagnosed New York University Medical Center’s 1,000th case of AIDS-associated Kaposi’s sarcoma. He was among the first to report this cancer’s association with the AIDS virus.
Dr. Friedman-Kien, 52, is a professor of microbiology and dermatology at the medical center. His brown eyes are piercing and he talks fast, trying to pass on as much information as quickly as he can.
“In February 1981, I saw a young man who was perfectly healthy except for a number of spots on his skin. He was an actor in his late thirties, and he came to me only because he was having trouble covering the spot on his nose with makeup,” Dr. Friedman-Kien told me. “I’d never seen anything like it, so I did a biopsy. Under the microscope, the cell structure was clear. It was’ Kaposi’s sarcoma [KS].
“A week later, another physician sent me another patient, also a gay man in his late thirties, also with disseminated KS,” he says, explaining that each spot is a separate tumor.
“Until then, as a dermatologist at the largest skin clinic in the United States, I’d seen fifteen cases of KS in 24 years, mostly in elderly men from a Mediterranean or Eastern European background.” The disease was relatively benign and could be treated with radiation or chemotherapy. Usually, elderly patients lived with it for many years and died of something else.
Then he discovered that a colleague, Dr. Linda Laubenstein, had also seen young homosexual men with KS. Soon, he had seen 26 young gay men with KS. Their lesions were so unusual that Dr. Friedman-Kien is now editing a color atlas to show physicians new manifestations of this old disease:
“Often, you’d hardly notice the spots. You had to look to see them. They were faint lavender or pink, like a mosquito bite, but not itchy. Primary-care physicians sometimes told patients they were birthmarks. Other lesions were dark purplish brown and lumpy. I’ve never seen a skin tumor vary so much,” he says. The spots were all over the body, not limited to the lower legs, as they are in the elderly.
“No patient of mine has asked that his life be ended. However bad, living’s better than the alternative.”—Alvin E. Friedman-Kien
Why was this disease behaving differently? Why was it attacking young homosexual men? As a researcher, he knew that KS was one of the most common cancers in Africa and that it also sometimes appeared in kidney-transplant patients who were taking immunosuppressive drugs to prevent rejection. When the drugs were stopped, the KS went away.
Many of the new KS patients had had many sexually transmitted diseases—hepatitis, syphilis—and they used recreational drugs such as amyl and butyl nitrite. Maybe the diseases and drugs had depressed their immune systems, allowing the KS to appear.
The new KS patients often developed lymphomas and other cancers, unrelenting herpes simplex infections, CMV infections that sometimes affected the eyes, and meningitis. “It’s a sadistic disease that destroys the immune system. The immune system protects us against malignant cells that probably develop all the time and against many organisms that don’t cause disease in people who have a healthy immune system,” Dr. Friedman-Kien points out.
AIDS patients with KS have a better prognosis than those whose first sign of the disease is Pneumocystis carinii pneumonia. “I have one patient who’s still alive and functioning six years after diagnosis of KS,” Dr. Friedman-Kien says. The NYU team has investigated AZT and ribavirin, both of which, Dr. Friedman-Kien notes, have an effect on a key enzyme in the AIDS virus. A study of AZT in KS patients is starting at NYU, one of fourteen national AIDS Treatment Evaluation Units.
“AZT is a beginning. It keeps patients with PCP alive a bit longer, until a vaccine can be developed. I see hope in my patients’ eyes,” he says.
“Dermatologists’ patients don’t usually die, and with AIDS you see a young person destroyed. It’s devastating,” he says. “But none of my patients has ever asked that his life be terminated. Living is so important that, however bad it is, it’s more acceptable than the alternative.
“Working with these patients has given me great appreciation for being alive and healthy. I’m closer to family and friends. Art helps. I used to paint; now I collect paintings. Sometimes I want to get away, but not for long, because I feel guilty that I’m not there when somebody needs me. You can never do enough.”
Call the child Tim. He’s eight now. In 1979, HE was referred to Dr. Arye Rubinstein’s immune-deficiency clinic at the Albert Einstein College of Medicine in the Bronx because he had recurrent infections, a common sign of immune problems. Dr. Rubinstein, 50, an Israeli-born immunologist who previously worked in Switzerland and at Harvard, is an expert in allergy and immunology.
Both Tim and his mother had frequent infections. Tim was her sixth child. At first his infections were bacterial, but then he began getting viral infections. He also had swollen glands—lymphadenopathy. Tim’s mother had a seventh baby, and it was sick from birth with serious, recurrent infections—so sick that Dr. Rubinstein’s team felt at that time that a bone-marrow transplant was the only way to save the child’s life. They tested the other children to find one who could serve as a bone-marrow donor.
They were astonished to find that all seven children had different fathers. Tim’s mother revealed that she was a prostitute and a drug addict and was often in jail. The baby died. Tim’s mother developed AIDS and disappeared.
Soon a second child with what turned out to be AIDS was referred to the clinic, and then others. “From the beginning it was clear that these children had an immune deficiency that was different from any we’d seen in the past,” he told me. The blood of patients with recurrent bacterial infections related to an immune deficiency usually has low levels of gamma globulin—which helps the body, fight off infection—or no gamma globulin at all. The children that Dr. Rubinstein saw actually had levels of gamma globulin that were above normal, but when they were immunized against common childhood illnesses, their bodies did not make the expected antibodies.
“We thought we’d found a new congenital immunodeficiency. Then we found that the mothers had the same pattern of immunodeficiency as their children, but they were healthy. This was even more puzzling,” Dr. Rubinstein says. Such a situation did not fit the pattern of any known congenital immune deficiency. In late 1980 and early 1981, Dr. Rubinstein began hearing about the first cases of adult AIDS, even before the reports had been published. Although the disease occurred in homosexual men, it sounded like what Dr. Rubinstein was seeing in children and their mothers.
“Now we know the mothers got it because they were intravenous-drug users, or sex partners of IV-drug users or bisexual men,” Dr. Rubinstein says, “but in 1981, nobody knew you could get AIDS through intravenous-drug abuse. That knowledge didn’t come out until the following year.”
Tim was placed in a foster home and later adopted. Like many children with AIDS, his development is neurologically delayed, and he is in a special school. He is part of Dr. Rubinstein’s treatment study, receiving high doses of gamma globulin to boost his immune system. AZT has not been tested enough to be used for treating children.
“We can give kids infected with the virus an acceptable quality of life. They can go to school and not feel handicapped.”—Arye Rubinstein
“In the past, children with AIDS died at the age of two or three from opportunistic infections that take advantage of an immune-deficient person. Today, more children are surviving to school age and may reach puberty. Their long-term prognosis is unclear, but we can prolong their lives and give them an acceptable quality of life. They can play with other children, go to school, and not feel handicapped,” Dr. Rubinstein says. So far, he has seen nearly 200 children infected with the AIDS virus, and more than 100 are still alive.
Children infected with the virus who need medical care come to a special pediatric unit where they can be treated and go home the same day. The atmosphere is informal and relaxed, the room filled with toys. The kids call their doctors by their first names. Since many of these children come from broken homes or their parents have died from AIDS, foster care is desperately needed. At one point, Dr. Rubinstein says, there were six AIDS children living in Jacobi Hospital because they had no place to go. One child lived in the hospital for three years. “She stopped talking and I thought it was neurological deterioration from the disease, but shortly after she was placed in a foster home, she was singing, smiling, and speaking,” he says.
Relatives or foster parents of the children have had a difficult time taking them in because of AIDS hysteria. “When one family walked up the stairs to their apartment, a neighbor would come out and wipe the railing with alcohol after them. People had to isolate themselves or keep the illness secret,” Dr. Rubinstein says. Meanwhile, a study of families with AIDS patients showed that the disease had never been transmitted by casual, even cozy, contact—not by sleeping in the same bed, not by eating from the same dish, not even by sharing the same toothbrush.
To help the children and to enable their parents or foster parents to go to their jobs, a day-care center has been opened at Bronx Municipal Hospital Center as part of its comprehensive AIDS family-care program. Children are carefully screened by physicians, psychologists, social workers, and nurses before they are enrolled at the center. Because these children’s immune systems are impaired, an infection in one child could pose a risk to the others. Therefore, they see a doctor and nurse first thing every morning before they come to the center for lessons and play groups.
The comprehensive AIDS program also involves research on ways to help children and their parents. Fifteen separate research studies are under way. They look at markers in the blood that may indicate the prognosis in an AIDS-infected individual.
A pregnancy-outcome study accepts any pregnant woman at risk of being infected with the AIDS virus. Already the Einstein team has learned more about the risks of transmission. If a woman has had a child with AIDS, she has a 66 percent chance of transmitting the virus to the fetus in a second pregnancy. If she is infected with the AIDS virus but has not given birth to an AIDS child, the risk of transmission is about 35 percent. And if she’s infected with the virus but is having her first child, the risk of transmission is only 20 percent. Dr. Rubinstein has also found that the AIDS virus can be transmitted to the fetus as early as the first three months of pregnancy.
Some pregnant women may choose abortion if they know they’re infected with the virus. Indeed, this may be desirable to protect their own health, since the previously quiet infection may erupt during pregnancy. But many want to have a child—their piece of immortality—despite the risks to themselves and to the fetus. If they choose to continue the pregnancy, treatment—perhaps with gamma globulin—may reduce the chance of spreading the virus to the fetus.
Although Dr. Rubinstein may be depressed by the disease he sees around him, he is heartened by the spirit of the parents of these children. “Many come from a low socioeconomic group, they’re poor, the family may have broken up, they may have used drugs, and now their child has AIDS because they gave it to him. You wouldn’t be surprised if they threw up their hands,” he says, “but many don’t. They become the best parents in the world. They straighten out their lives, they spend hours with their kids. They give up longing for material things and look for spiritual and religious values.” Coming to terms with AIDS, whether as patient, parent, or physician, he says, “drives people back to their own philosophy of what is important.”
Renowned for what one AIDS researcher calls its “beautiful epidemiology,” the New York City Department of Health collects the numbers needed to monitor the disease, to detect an outbreak in a previously untouched population, to predict needs. Who has AIDS? How did he or she get it? What are the risk factors? What does the presence of the disease mean for the city and the country?
The department doesn’t wait for doctors to report AIDS cases. Twenty-four public-health advisers in its active surveillance program maintain contact with about 80 New York hospitals. They ask to be informed of cases of AIDS or AIDS-related illness such as PCP, they review charts, and they identify AIDS patients.
AIDS patients are reported to the Health Department—usually by name—through the surveillance program or by private doctors. Names are important for accurate statistics, because an AIDS patient may be seen at two or three hospitals but should be counted only once.
When reports of AIDS cases come in to the Health Department, the names are immediately removed from the records and a code is substituted. No one outside the surveillance office has access to the names, but the information in the records is computerized and shared with the CDC and the New York State Health Department each month.
Dr. Rand Stoneburner, 37, head of the AIDS Surveillance Unit, points out that “96 percent of cases fit into the known risk groups. Of the 4 percent that don’t, we can often find a risk factor when we investigate. For many of the rest, we feel that there’s a risk factor but we can’t get them to tell us about it,” he says. For example, of 38 men who claimed to have gotten AIDS from prostitutes, the department was able to learn, after investigation, that 18 admitted to having had homosexual relations and 6 admitted to using IV drugs. Indeed, after the department has done its thorough interviewing, only 0.7 percent of AIDS patients remain in the “no known risk factors” category.
Careful interviewing has shown the flaws in some alarmist statements about AIDS. For example, testing of military recruits for the presence of the AIDS virus, begun in 1985, showed that 1.14 percent of those from New York City were positive—and that the male-to-female ratio was close to one to one. That made some reporters assume that the AIDS virus was being transmitted heterosexually.
“But the supporting data weren’t there. Assumptions were being made,” Dr. Stoneburner says. Rejected recruits who had tested positive for the AIDS virus were advised to call the Department of Health’s AIDS hot line (718-485-8111). About a quarter of them were counseled, and in the process most revealed that they had a known risk factors for acquiring AIDS—usually IV-drug use or bisexuality.
Nevertheless, despite the department’s best efforts, Dr. Stoneburner suspects that the true number of deaths caused by HIV-related disease in New York City is underreported.
As for the department’s educational efforts, staffers acknowledge that it is difficult to motivate drug users to change their behavior. “Society isn’t concerned enough about users of IV drugs, but drug abuse has to be recognized as an illness, like alcoholism, and treated,” Dr. Stoneburner says. If treated, adults with AIDS are more likely to be receptive to the health-education message and realize the risks to themselves, their sex partners, and their children.
Study of the epidemiology of AIDS in New York City began in the summer of 1981, when Dr. Polly Thomas, a pediatrician, completed her training as an Epidemiologic Intelligence Service (EIS) officer with the Centers for Disease Control in Atlanta and was assigned to the New York City Health Department. Part of her job was to study the new disease in homosexual men.
Dr. Thomas, 35, a slim, brown-haired woman who looks like a college student, began interviewing persons with AIDS and a control group of healthy homosexual men who had been found through private physicians and clinics for sexually transmitted diseases.
“Back then, I was one of only three people at the Health Department assigned to this disease. I interviewed gay men and set up a surveillance program for hospitals to report cases to the Health Department. The CDC had us fishing for a common thread—sexually transmitted diseases, nitrites, cocaine, and sun exposure related to Kaposi’s sarcoma. With epidemiology, you can characterize the group of people who are ill but you need to know how they differ from other people who are well. In the difference, you may find a clue to the source of their illness,” Dr. Thomas says.
“At that time, we used a twenty-page questionnaire. We asked about education, income level, racial and ethnic background, past health, travel, exposure to drugs and chemicals, and sexual activity. Answering the questions took about 45 minutes. The early general questions about background helped you relax with the person,” she says.
“The first man I interviewed was upper middle class, well educated, with an interesting job. He knew I’d never asked too many questions about sexual activity before, and he was very nice and very helpful. I had gay friends, but I didn’t know about the bathhouse scene. I must have done 50 interviews over six weeks. We worked evenings and holidays. That was the year that I worked all the city holidays—Election Day, Veterans Day. Sometimes we went to the person’s apartment or we met in a coffee shop or the person came to the office. Most of the men were great, painstaking about their histories, and cordial. It hurts when you learn they’ve died,” Dr. Thomas says.
Dr. Stoneburner suspects that, despite the Department of Health’s best efforts, the true number of deaths caused by AIDS in New York City has been underreported.
But no answers leapt out from the questionnaire. The sick men and the healthy men had very similar life-styles; it was later learned that some healthy controls were infected with the virus but hadn’t become sick yet. The sick men had had more sexual contacts, and it seemed that sexual activity rather than drug exposure increased the likelihood of infection.
Then, in 1981 and 1982, AIDS was recognized in intravenous-drug users and their sex partners. They didn’t have the same risk factors as the homosexual men—recreational use of nitrites, for example. In 1982, AIDS was recognized in people who had received blood transfusions (before current tests to screen out AIDS-contaminated blood) and in children.
Although she was in the center of the whirlwind, Dr. Thomas wasn’t frightened for herself. It was clear to her that the worker at the desk next to someone with AIDS didn’t get the disease; it didn’t spread through the air, or through a handshake. It had to be a direct transfer by sexual contact or by blood through transfusions or shared needles.
“My generation grew up thinking there was a vaccine for almost everything—for smallpox or strep throats. We had forgotten that there was no treatment for syphilis or tuberculosis for a long time,” Dr. Thomas says.
“There’s no reason to be terrified,” she adds, stressing that people need to know that AIDS is transmitted by sex and by shared needles. Protection lies in avoiding casual sex and in using condoms to decrease the risk of transmission. “As a physician, I’d hate to be on the sidelines in this battle, but as a mother of two daughters I’m wondering what I would tell them if they were teenagers now,” she says. Today, Dr. Thomas is concentrating on risks of transmission of AIDS from mother to fetus. She hopes to have some answers from her study by this summer.
Dr. Stoneburner, head of the AIDS Epidemiology and Surveillance Unit, is a slim, dark, handsome South Carolinian who got his M.D. from Tulane University in New Orleans and worked in a community health center in a poor part of that city, and in West Africa. He got his epidemiology training at the CDC. His first discovery at the Health Department was an increase in tuberculosis among blacks and Hispanics, and in neighborhoods where intravenous-drug use was widespread.
“That’s unprecedented in TB history. TB has declined for a century as living conditions, general health, and chemotherapy have improved,” Dr. Stoneburner says. Researchers think that the rise may be linked to AIDS: TB may be another opportunistic infection that indicates an HIV infection that has not yet been diagnosed.
“TB is an infection with important implications for public health. TB spreads easily. You don’t get it, like flu, from being sneezed on in the subway, but you might get it from spending an hour in a room with somebody who’s infectious,” Dr. Stoneburner says.
Is it possible that infection with the AIDS virus is not invariably fatal? Is it possible that somebody can be a lifelong asymptomatic carrier and never develop the disease? Yes, says Dr. Donald Armstrong, 55, chief of infectious disease at Memorial Sloan-Kettering Cancer Center. “There are people infected with the virus who have been followed for years and haven’t developed the disease, and I’m not sure that they will.
“If there are a million or a million and a half people infected with the virus and only 25,000 cases of AIDS, then there are a million and a half, minus 25,000, walking around healthy,” Dr. Armstrong says. Some may come down with the disease, but many may not.
“Even among those with lymphadenopathy, only 7 percent per year have so far come down with the disease. In the others, after a period of years, the lymphadenopathy may go away and they’ll become immune and not have the disease. They might develop immunity. Then the virus might disappear from their blood and they wouldn’t be infectious. We just don’t know,” Dr. Armstrong says.
“Chronic viral infections are not unheard of—even infections of lymphocytes, as occurs with the AIDS virus. In the majority of people there’s no disease as a result,” Dr. Armstrong says. “After infectious mononucleosis, people may carry the Epstein-Barr virus for years without any disease, although we don’t know how long a person will be infectious. A herpes carrier can transmit the virus with no apparent disease,” he says.
“Some people infected with the virus have been followed for years and have not developed AIDS.”—Donald Armstrong
Dr. Armstrong, a reserved man, organized the Intercity Infectious Disease Rounds, during which the city’s leading infectious-diseases specialists share information about puzzling cases. In 1980 and 1981, doctors began presenting cases of what is now known to be AIDS. “When a number of cases of an unknown disease occur, it’s an epidemic,” he says.
Since then, as an expert in opportunistic infections, Dr. Armstrong has seen several hundred AIDS patients. He and his colleagues at Memorial Sloan-Kettering, along with researchers at the Greater New York Blood Program, are studying the natural history of infection with the AIDS virus. Previous plasma donors who were found to be asymptomatic carriers of the virus, and lymphadenopathy patients with AIDS infection, are being followed and compared with a control group of uninfected homosexual men in Ithaca and New York City. From this study, the researchers hope to learn what happens to people infected with the AIDS virus.
Dr. Armstrong is head of the AIDS Treatment Evaluation Unit at Memorial, and he heads a drug-discovery unit, supported by the National Institutes of Health, that looks for and tests new drugs against AIDS. So far, the unit has tested dideoxycytidene, a drug related to AZT; it will soon put patients on AZT, and will test the effects of high and low doses of AZT. Trials of AZT and alpha interferon are being planned.
“We’re in the infancy of learning about this complicated group of viruses,” he says; precautions are in order. A practical man, Dr. Armstrong is in favor of making sterile needles available to drug addicts, to see if that would reduce the risk of infection.
“If individuals know they’re at risk, whether they’re positive by test or not, they should alter their behavior to protect other people and themselves. Whether they’re heterosexual or homosexual, if they have sexual contact with anybody else without using a condom, they’re taking a risk. Condoms may not be perfect at preventing infection, but they’re better than nothing.
“The gold standard is celibacy. If everybody were celibate, there’d be no further spread of this disease by sexual transmission,” Dr. Armstrong says. “But it’s not practical to assume that everybody’s going to be celibate. Not from a moral point of view but from a practical one, the more partners you have, the greater your chance of contracting the disease.”
’With AIDS in heterosexuals, we are now where we were with homosexuals in 1980 and 1981: The epidemic curve is up and up. The time to take action is when relatively few are infected, as now,” says Dr. Fred Valentine, head of NYU’s AIDS Treatment Evaluation Unit.
“If we could magically stop transmission of the virus today, we would still see thousands of cases of AIDS every year for the next five years, because of the numbers of people who are infected with the virus and the length of its incubation period. In 1991, according to projections, there will be 74,000 new cases of AIDS nationally at a cost of $8 billion a year,” Dr. Valentine points out.
Tall, lean, gray-eyed, and harried, Dr. Valentine, 52, ate his lunch—a sandwich—at three in the afternoon while we talked about prospects for patients. AZT, though it is not a cure, is a promising way to manage the disease. “In patients who’ve had PCP, it prolongs life at significant cost in side effects. Because it can cause anemia, about half of the patients require regular blood transfusions of up to three or four units of blood per month. And it will be necessary for them to take the drug forever, and get blood transfusions forever. We need something better,” he maintains.
A vaccine is a possibility, but it is not likely to be developed soon. Conventional vaccines are given before the patient is infected. Antibodies may prevent a virus from entering cells, but once the virus is in the cells, antibodies cannot eliminate it.
Although patients develop several different antibodies to different parts of the AIDS virus, the antibodies may not be effective in eliminating the disease. “You can isolate antibodies from a patient who goes on to die of the disease,” says Dr. Valentine. “Besides, the AIDS virus seems to change its stripes frequently to avoid the immune response. No two isolates of the virus are genetically inherited. It makes the flu virus—however changeable it is—look like an amateur,” he says.
All we have now is education, the cornerstone of preventive medicine. “We need an educational campaign of the sort that’s used to sell Coca-Cola. You have to keep repeating things. The gay groups have mounted vigorous educational campaigns to alter high-risk behavior, but mainstream America isn’t listening yet.
“It’s hard to do an educational campaign that involves talking about sex, because many Americans find it difficult to talk about sex. AIDS, however, is everybody’s concern. People must inform themselves and they must be sure to inform their children. Having casual sex and many partners, whether homosexual or heterosexual, simply has to stop, because of the risk.
“Condoms are a sensible public-health measure to decrease the risk. I have talked to my sixteen-year-old daughter about this. She could probably tell you everything that I’ve said today,” Dr. Valentine says. “It’s a damn shame, because sex is fun, but the chance of becoming infected with a fatal agent now exists.”