A Positive Blood Test Was Almost Like a Death.
From the early 1980s, when it was first identified, through the mid-1990s, the prognosis was dire: Almost uniformly, it was fatal. And, very likely, the end was not kind.
Those afflicted with the disease often literally wasted away. With their CD4 or T cells destroyed and the virus constantly replicating, their immune systems became powerless to fight off infections. Lesions often developed in their brain, causing stroke-like symptoms and signs of dementia. Thrush, a painful fungal infection, ravaged their mouths, throats and esophagus, impairing their ability to swallow, eat or drink. A virus destroyed their retinas and their eyesight leading to blindness. Spots and nodules appeared on their skin; usually painless, but marking them as lepers of this insidious and stigmatizing condition.
Hospitals in New York City were overwhelmed. Doctors, nurses and funeral homes often kept their distance for fear of contagion. Government resources to fund research in search of better treatments were grossly inadequate.
Today, nearly four decades later, HIV/AIDS is a chronic and often manageable disease. No change in a previously lethal condition has been more dramatic for patients and practicing physicians of a certain age. Patients who are compliant with their meds can expect to live long and essentially normal lives.
Dr. Ed Telzak, Chair of the Department of Medicine at SBH and an infectious disease specialist, remembers when he was a young attending physician at a major Manhattan cancer center with a very large HIV population. At first, the clinical presentation of patients with this new disease left even experienced infectious disease doctors feeling bewildered and isolated. Eventually, infectious disease physicians from the city’s major health institutions – through weekly Intercity Infectious Disease Rounds – gathered to discuss and share their experience about this puzzling illness. This helped them identify new risk groups and the importance of such things as screening prior to blood transfusions. Still, it was like putting together a 1,000-piece jigsaw puzzle with the clock ticking.
“One of the very strong memories I had at the institution where I was working was that a lot of young people died from cancer and a lot of young people, overwhelmingly men, died from HIV/AIDS,” says Dr. Telzak. “The people who died from cancer, their rooms were filled with family at the end. The people who died from HIV, they were alone. Sometimes they had a partner, sometimes a crying mother from the Midwest. But most people died alone. Not only did the staff feel an obligation to care medically for these patients, but they also had to support them emotionally an spiritually when they were dying because no one else was there.”
Dr. Telzak treated his first AIDS patient when he was an intern training in Boston in 1981. The patient was a young gay man about his age who had been transferred from a hospital in Cape Cod. A lung biopsy showed the patient had pneumocystis, a serious fungal infection of the lung. Doctors put the patient on a ventilator and treated him with a daily injection of Pentamidine, a medication so rare it needed to be flown in by the CDC and picked up at the airport.
“I remember giving him this daily injection in the ICU because he had failed Bactrim, which was a known treatment for pneumocystis based on trials in a childhood leukemia population who developed this infection,” says Dr. Telzak. “Bactrim was a proven therapy but our patient was getting worse. I gave him these daily IM injections…in his thigh, in his right and then in his left. He died over the course of 10 days and that was the beginning of a series of patients, all young gay men, who came in extremely ill. Many had pneumocystis, but also a range of very unusual infections that even very experienced ID doctors had not seen before.”
Within several years, hospitals in New York City and other major American cities became overwhelmed with HIV positive patients. Dr. Judy Berger, Director of Infectious Diseases at SBH, remembers seeing this first as resident and fellow at hospitals in Manhattan and Brooklyn, before becoming an attending physician at St. Barnabas Hospital in the early 1980s. Even more heartbreaking, her hospital rotations would take her to pediatric units where a growing number of young patients were cared for.
“I was in medical school from 1976 to 1980 and HIV was not a known entity, but we began to see IV drug users come in with lymphadenopathy and we were doing biopsies and finding what is called hyperplasia,” she says. “We had no idea what it was. Maybe, we thought, it was something these drug users were injecting, some kind of antigen stimulation. But, there was something else going on, only we had no idea what. In hindsight, I am sure we were seeing HIV.”
She would treat patients with toxoplasmosis in every organ – the brain, the pancreas, the lungs. This would later be found to be the most common central nervous system infection in AIDS patients not receiving appropriate prophylaxis. At that time, however, the condition was still a mystery.
The disease, says Dr. Berger, was initially focused around the 4H’s: homosexuals, Haitians, hemophiliacs, and heroin. That would soon change.
Dr. Jonathan Samuels saw patients with conditions he had never seen before when he came to New York City to train after completing medical school in Chicago.
“I remember there was one Christmas where we were going around giving everyone presents,” he says. “There was just so many patients with AIDS and they were so sick and they weren’t going to get better. It was so sad. Then AZT came out and some would get better for a little while. Their hair would grow back and they would gain weight and they would start to feel better and then after a year or two they would begin to deteriorate, and they would get really sick and die.”
Recent research shows that the AIDS virus first landed in America a decade earlier, around 1971, with the time between infection and onset of symptoms taking, on average, about 10 years. Contrary to the once accepted premise that an Air Canada male attendant was “patient zero,” spreading the disease through sexual partners along his route, it is now believed to have started in the city of Kinshasa in the Congo as far back as the 1920s. According to the journal Science, the virus then spread as the result of a roaring sex trade, rapid population growth and unsterilized needles, by rail and river around the world after the Congo gained its independence in 1960.
During the 1980s, AIDS patients in the U.S. typically sought treatment in the later stages of the disease. Their reasons were part stigma and part denial – after all, there was no rush to begin treatment. Once a patient was diagnosed as HIV positive, little could be done.
“People were not motivated to be tested,” says Dr. Telzak. “Many of the patients we saw throughout the ‘80s already had AIDS [marked by a T cell count under 200, compared to 1,000 for healthy people and with an opportunistic infection] by the time they were tested. The median lifespan was 12 to 1 months after first diagnosing AIDS.
“As time went on and treatments became better, there was much more motivation to be tested earlier. People started out at a much healthier position. The trick was to keep the patients alive until something better came around to treat them.”
The drug AZT, which received FDA approval in 1987, gave patients and providers hope, but in retrospect, Dr. Telzak calls it no better than a “C minus drug.” Dr. Michelle Dahdouh, an infectious disease expert at SBH, remembers some of the drug’s side effects. “Pancytopenia, fatigue, headaches, diarrhea. For a subset of patients, taking the medication was almost equivalent to the disease,” she remembers. “I remember with AZT it was very difficult for them to tolerate. They had to take it every four hours, but it would keep them alive longer.”
There were increasing concerns during and after the deaths of these patients, as the fear of transmission grew. In some cases, healthcare professionals didn’t want to take care of them. Surgeons didn’t want to operate on them. Nurses didn’t want to enter their rooms. Funeral homes didn’t want to bury them.
“I remember young people going down very quickly,” says Dr. Dahdouh. “There was even a question of where they would be buried. One family came to me and said, ‘Who is going to bury her?’ I said I didn’t know which funeral homes would accept HIV patients, and called a doctor I knew. It was a problem. A lot of funeral parlors refused to take HIV patients.”
In many hospitals, HIV positive patients were isolated from the general population. Dr. Telzak says he often felt like a palliative care doctor and spent as much time helping his patients die as he did trying to keep them alive. Keeping patients alive for days or weeks was often a pyrrhic victory. Dr. Berger remembers the precautions taken by staff. “We started wearing gloves for the first time,” she says. “When it was first suggested we wear gloves, it wasn’t accepted readily by the medical staff. They felt that the patient would feel stigmatized. It was really an issue of educating people. It was decided that as long as you wore gloves for everybody, it wasn’t a matter of being stigmatized.”
Acknowledging the Disease
There became more clarity within the medical community when The New England Journal of Medicine published on June 7th, 1981, a report from a Los Angeles physician on his treatment of five gay men at UCLA Medical Center who had come down with Pneumocystis carinii pneumonia. A month later, on July 3rd, The New York Times ran its first article on the subject with the headline “Rare Cancer Seen in 41 Homosexuals.” According to the article:
“Doctors in New York and California have diagnosed among homosexual men 41 cases of a rare and often rapidly fatal form of cancer. Eight of the victims died less than 24 months after the diagnosis was made.
“The cause of the outbreak is unknown, and there is as yet no evidence of contagion. But the doctors who have made the diagnoses, mostly in New York City and the San Francisco Bay area, are alerting other physicians who treat large numbers of homosexual men to the problem in an effort to help identify more cases and to reduce the delay in offering chemotherapy treatment.”
By the end of that year, the disease better known then as GRID (for gay related immunodeficiency) had affected at least 335 people and killed 136.
In the mid-1980s the NIH developed a consortium of clinical trial units throughout the country with several at major New York City institutions. This led to incremental improvements in care with the arrival of a variety of individual drugs. Doctors were still working in the dark, however, doing whatever it took to keep their patients alive. Dr. Carol Epstein, who was a fellow in infectious diseases at a hospital in lower Manhattan, recalls counterintuitively treating AIDS patients with prednisone during acute episodes of Pneumocystis pneumonia. These patients were immunosuppressed, yet prednisone literally saved their lives by calming the inflammation, she says. Yet, it did nothing to restore their immune systems. Many patients lived a little longer. It was putting a band aid on a hemorrhaging wound.
Occasionally, a patient survived after diagnosis and remained well for a very long period of time. These “elite suppressors” or “long-term non- progressors” were the outliers, blessed with robust immune systems that allowed them to stand up to the infection and beat the long odds. Dr. Epstein continues to care for one AIDS patient she has been treating for nearly 30 years.
In the late 1980s, organizations like Act Up (AIDS Coalition to Unleash Power) rang the bell in search of answers. Dr. Telzak, who at this time was also working at the New York City Department of Health, believes it was their more vocal and visible approach that ultimately helped save patients. “It was the beginning of very intense patient and group advocacy,” he says. “They could be very disruptive, taking over the commissioner’s office so no
one could do their work [and holding demonstrations at the New York Stock Exchange and in the theater district and at other highly visible locations]. But, over the long term, they had a dramatic effect on the amount of investment the federal government made. [The administrations of] Reagan and Bush had not been terribly interested in dealing with the disease or with the marginalized patients who developed the disease. Some felt it was a message from God. Act-Up’s mission was to get funding for treatment at earlier stages. The hell with three years of randomized control trials. You have a hint of a benefit, then you give the drugs out. In fact, they sped up the FDA process not only for drugs that worked against HIV but for many other diseases as well.”
Hope, At Last
In the summer of 1996, hope surfaced when scientists presented startling new data at the International AIDS Conference in Vancouver. Revealed was the extraordinary power of new antiretroviral drugs, called protease inhibitors, which, when used together with other available drugs, formed what became known as combination therapy (or HAART, for highly active
antiretroviral therapy). Although not a cure, the drugs would overnight change the course of the epidemic. Doctors, for the first time, were able to treat the underlying cause of their patients’ opportunistic infections.
There was a good deal of skepticism about the drugs at first – and the taste of the medication was foul. Dr. Berger remembers how patients coated the insides of their mouths with peanut butter to soften the taste. The drug companies gave out water bottles with the pills because patients had to drink eight ounces three or four times a day. But these patients, who had been wasting away, started to gain weight and their T cell levels improved dramatically. This proved to be a truly defining moment.
“The world changed,” says Dr. Berger. “Our attitudes towards taking care of HIV patients changed. Why? Because we had something to offer. It wasn’t just seeing patients and treating their opportunistic infections and trying to be positive. We all of a sudden had something to offer them.”
Patients who were HIV positive and facing death soon found themselves planning for the future. Ralph Belloise, director of HIV at SBH Health System, has been on the front lines in treating HIV positive patients for 29 years. He says that in New York State, where the cost of treatment and social support is subsidized, the rates of HIV infection continue to drop annually. Testing goals are continually surpassed. The rate of those in the Bronx who get engaged in care in a timely fashion stands at an all-time high of 84 percent.
“There are people who have been HIV positive for years, who are now able to work,” says Belloise. “If you take your meds every day, you’ll do well. You do have a section of the population who will be virally suppressed before they adhere to their treatment plan. And you have those who quasi take care of themselves and fall off and say, ‘Maybe I’ll take a break.’ In two months, their levels could be back in the upper stratosphere. And it could become resistant. And then you have the small but challenging group who pays no attention to their care because of their complex psycho/social situation. But we’re not seeing a large portion of the population that is not taking care of themselves.”
The phrase “treatment as prevention” is pervasive today. Medication cannot only virally suppress patients, reducing the amount of HIV in their blood to undetectable levels, but it can prevent the sexual transmission of the virus. PrEP, or pre-exposure prophylaxis, can lower the chances of individuals at high risk for HIV from getting the disease. Those who had an unprotected sexual encounter with someone whose HIV status is unknown can now take post-exposure prophylaxis to prevent infection. Unlike in the ‘80s, intravenous drug users today can walk into any pharmacy and get clean needles. Belloise says he still occasionally sees patients with T-cell levels like in the ‘80s, patients with very compromised immune systems. These are mostly the homeless and mentally ill. But, they are the exception, not the rule.
“We don’t use the term AIDS any longer, our epidemic is predominantly HIV positive,” he says. “Most will never have an AIDS diagnosis, just an HIV infection, as long as they are put on medication early and are compliant in taking their meds.”
To date, more than 100,000 New Yorkers have died from AIDS-related causes. This includes both celebrities like Arthur Ashe and Perry Ellis and Halston, and those from small towns and cities whose families chose to abandon them as they lie dying in isolated hospital rooms. And while an estimated 125,000 HIV positive people live in the city today, 20 percent do not realize they are infected. Hence theimportance of ongoing testing for HIV.
The prognosis is a positive one. Dr. Berger met last week with a recently diagnosed HIV positive patient. “I told him that he will live a long life if he takes his medications,” she says. In addition, she recently wished happy birthday to another HIV positive patient. He was turning 80.
A companion piece on the evolution of HIV/AIDS treatment can be heard on SBH Bronx Health Talk, SBH’s weekly podcast, at http://www. sbhbronxhealthtalk.org/e/the-hivaidepidemic-a-look-back.