A positive blood test was a death sentence.
Welcome to SBH Bronx Health Talk, produced by SBH Health System and
broadcast from the beautiful studios at St. Barnabas Hospital in the Bronx. I’m
Steven Clark.

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 literally wasted away. Lesions often
grew on their brain, causing dementia. Thrush, a painful fungal infection, ravaged
their mouths, tongues and throats, impairing their ability to eat or drink. A virus
destroyed their retinas and their eyesight. Spots appeared on their skin, 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 shied away
from funding research for better treatments.

Today, nearly four decades later, HIV/AIDS is a chronic and often manageable
disease. Patients who are compliant with their meds can expect to live long and
normal lives.

Today’s episode of SBH Bronx Health Talk departs from our regular format where
we interview a featured clinician. Instead, we will examine the evolution of the
HIV/AIDS crisis in New York City, based on interviews held recently with
medical experts at SBH Health System who have witnessed the journey up close.
This included a roundtable discussion with five infectious disease specialists who
started their medical training at the beginning of the epidemic and an interview
with the hospital’s Director of HIV who has been on the front lines for nearly 30
years.

Dr. Ed Telzak, chair of the Department of Medicine at SBH and an infectious
disease specialist, remembers being a young physician at a Manhattan cancer
center with a very large HIV population. At first, the symptoms left doctors
bewildered and isolated. Eventually, the city’s major health institutions introduced
weekly intercity calls to discuss this puzzling illness. This helped them identify
new risk groups and the importance of such things as donor screenings prior to
blood transfusions.

One of the very strong memories I had when I was at Memorial was a lot of
people died from cancer and a lot of people died from HIV. 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 Nebraska would come. People died alone. I
think the staff felt an obligation to sort of be involved in their death 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. The more experienced infectious disease doctors, he
recalls, didn’t know what to make of the patient’s symptoms. A lung biopsy
showed the patient had pneumocystis (NEW-MO-CYSTIS), a serious fungal
infection of the lung, and was placed on a ventilator. Doctors treated him with a
daily injection of Pentamidine (PENT-A-MY-DINE), 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 and Bactrim was a known treatment for pneumocystis based on all
the leukemia population in children who developed pneumocystis. Bactrim
was a proven therapy but he was getting worse. I gave him these daily IM
injections…in his thigh, in his right and then in his left. He probably over the
course of 10 days wound up dying and that was the beginning of a series of
patients, all young gay men, who came in. Many had pneumocystis, but also a
range of bizarre infections that most very experienced ID doctors had not
seen.

Within several years, local hospitals in New York City, as well as in cities like San
Francisco and Los Angeles, became inundated with HIV positive patients. Even
more heartbreaking, the doctors as medical students and residents would see during
their rotations in pediatric units a large number of children with AIDS. Dr. Judy
Berger, Director of Infectious Diseases at SBH, was a medical student at Mount
Sinai and resident and fellow at hospitals in Brooklyn.

I was in medical school from 1976 – 80 and didn’t know there was HIV, but
we began to see IV drug users by 1978 see IV drug users come in with swollen
glands and we would send them for biopsies and there were all.

It was a disease, says Dr. Berger, initially focused around the 4H’s: homosexuals,
Haitians, hemophiliacs, and heroin.
Dr. Jonathan Samuels first saw patients dying of AIDS when he came to New York
City at around this time to train.

I remember there was one Christmas. They were just so many of them and
they were so sick and then weren’t going to get better. It was so sad. Then
AZT came out and they 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 peter out and they would get really sick
and die. And then they would be dead.

Recent research shows that the AIDS virus actually first landed in America a
decade earlier, around 1971. It’s now believed that the time between acquiring the
infection and the onset of symptoms, on average, runs about 10 years. This
contradicted a once accepted premise that an Air Canada male attendant was
“patient zero,” spreading the disease through sexual partners along his route. The
disease, it’s since been determined, started in the Congo. It then spread as the
result of a roaring sex trade, rapid population growth and unsterilized needles by
rail and river after the Congo gained its independence in 1960.

Patients typically came to hospitals for care in the later stages of the disease. It
was part stigma and part denial – after all, there was no rush to begin treatment.
Once diagnosed as HIV positive, little could be done, remembers Dr. Telzak.
People were not motivated to be tested. Many of the patients we saw
throughout the ‘80s already had AIDS by the time they were first tested. The
median lifespan was 12 to 18 months. – As time went on, 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 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 drawbacks when she trained in the
Bronx.

I remember with AZT it was very difficult for them to tolerate things, to have
to take it every four hours, but it would keep them alive longer. The
medication was so difficult for them to tolerate that it was almost equivalent
to the disease.

There were concerns before, during and after the deaths of these patients. In some
cases, healthcare professionals didn’t want to take care of them. Surgeons didn’t
want to operate on them. Funeral homes didn’t want to bury them.

Dr. Telzak says he began to feel as if he were a palliative care doctor. Dr. Berger,
who started working at St. Barnabas Hospital in the early 1980s, remembers the
precautions that were taken by staff.

We started wearing gloves. When it was first suggested we wear gloves, it
wasn’t accepted readily. They felt that the patient would feel stigmatized. It
was really an issue of educating people that you would wear them on
everybody. As long as you wore them for everybody, it wasn’t a matter of
being stigmatized.

There became more clarity among physicians when The New England Journal of
Medicine published an article on June 7th, 1981. A month later, on July 3rd, The
New York Times ran its first article with the headline “Ran Cancer Seen in 41
Homosexuals.” By the end of 1981, the disease better known then as GRID (for
gay-related immunodeficiency) had affected at least 335 people and killed 136.
In the mid-80s the NIH developed a consortium of clinical trials at several major
New York City institutions. This led to incremental improvements in care with the
arrival of individual drugs. Doctors did whatever it took to keep their AIDS
patients alive. Dr. Carol Epstein, then a fellow in infectious diseases at a hospital
in lower Manhattan, remembers counterintuitively using steroids on patients during
acute episodes of pneumocystis (NEUMO-CYSTIS) pneumonia. The steroids
saved their lives by calming the inflammation. Yet they 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. It was like hitting the AIDS lottery. These “elite
suppressors” or “long-term non-progressors,” as they were called, were blessed
with robust immune systems that withstood the infections. Dr. Epstein has treated
one patient now for nearly 30 years.

One of the patients in my private office I’ve seen since 1992. He’s a super in a
building Yonkers.

Over the next few years, organizations like Act Up rang the bell in search of
answers. Dr. Telzak, who at this time was also spending time at the New York
City Department of Health, believes Act Up helped save patients through their
efforts.

It was the beginning of very intense patient advocacy and group advocacy. I
think Act Up, in retrospect they were a pain in the ass and no one could do
their work. They came in. They took over the commissioner’s office.
Ultimately they had a dramatic effect on the amount of the investment the
federal government made. I mean Reagan and Bush were not interested. It
was like God’s message. This was a marginalized population. I think their
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.

In the summer of 1996, hope surfaced. Scientists presented startling data at the
International AIDS Conference in Vancouver. Revealed was the extraordinary
power of new antiretroviral drugs. Called protease inhibitors (PRO-TEASE), when
used together they formed what became known as combination therapy (or
HAART – highly active antiretroviral therapy). Although not a cure, the drugs
overnight altered the course of the epidemic. Doctors were better able to treat
their patients’ opportunistic infections.

We all felt if we could get patients to take their medications, something better
would come along.

There was a good deal of skepticism about the drugs at first – and the taste of the
medication was nothing less than foul. Dr. Berger remembers how patients coated
the inside 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. To Dr. Berger
and the others doctors, this was a parting of the seas, manna suddenly delivered
from heaven.

The world changed. Our attitudes towards taking care of HIV patients.
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 found themselves planning for
the future. Ralph Belloise, director of HIV at the SBH Health System, has been on
the front lines in treating HIV positive patients for 29 years. He’s seen what it was
like then, and how it is today. The rates of infection in New York State, where
treatment is paid for and social support is robust, continue to fall annually. Testing
goals are continually surpassed. Those in the Bronx who get engaged in care in a
timely fashion is at an all-round high, at 84 percent.

There are people who have been HIV positive for years, who take their meds
every day. And people who have been disabled and able at work. If you take
your meds every day, you’ll do well. You do have section of 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, could be back in the upper stratosphere.
And it could become resistant. And then you have the group who pay no
attention to their care because of their psycho social situation. Transsexual
population. But we’re not seeing a large portion of the population that is not
taking care.

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 (PRO-FE-LAXUS), 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 take a post
(POST)-exposure prophylaxis to prevent an infection. Unlike in the ‘80s,
intravenous drug users today can walk into a pharmacy to get clean needles.
Belloise says he still occasionally sees patients with T-cell levels like in the ‘80s,
patients with very compromised immune systems. This is mostly the homeless and
the mentally ill. Yet, the majority of the HIV infected patients he sees may never
even get an illness diagnosis.

Don’t use AIDS any longer, our epidemic is predominantly HIV positive.
They will never have an AIDS diagnosis, put on medication early. Won’t even
have HIV illness diagnosis, just HIV infection as long as they take their
medication every day.

To date, more than 100,000 New Yorkers have died from AIDS-related causes.
Both well-known people like Arthur Ashe and Perry Ellis and Halston, and those
whose families chose to abandon them as they lie dying in isolated city hospital
rooms. And while an estimated 125,000 HIV positive people live in the city today,
20 percent of whom don’t realize they are infected, they have a right to believe
they now have a future.

Dr. Berger met last week with a recently diagnosed HIV positive patient.
I told this patient that he will live a long life if he takes his medications.
In addition, she recently wished a happy birthday to another HIV positive patient…
on his 80th birthday.

Thank you for joining us on SBH Bronx Health Talk. For more information on
services available at SBH Health System, visit www.sbhny.org. Thank you for
joining us.