Diary of an HIV Doctor:
Life During the Early Years of the Epidemic
by Daniel S. Berger,
MD
ACT UP and other AIDS
activists were often chaining themselves to various public
buildings. They were frequently getting arrested while shouting
and attempting to increase public awareness for AIDS. Two
Republican presidents refused to demonstrate the slightest
cognizance of the rapidly developing national emergency. It
was commonplace to see individuals who looked like skeletons,
many riddled with Kaposi’s sarcoma lesions. We were desperate
to help patients with opportunistic infections with little
or no treatments. Cryptosporidium, PML, toxoplasmosis, CMV
encephalitis, CMV retinitis, cryptococcal meningitis and MAC.
The year was 1984, 1985, 1986, 1987, 1988, 1989 or 1990.
During this era people like
Martin Delaney were busy making drug runs across the border
to Tijuana, Mexico to obtain ribavirin. Jim Corti was bringing
in compound Q from Shanghai, China. Jim brought in, then illegal,
clarithromycin (Biaxin) from Italy by request from me for
my patients with MAC (later finally approved by the FDA).
Several people in California and Texas were involved with
the production of bootleg Hivid (ddC). A Philadelphia research
lab was raided of its gp160 treatment vaccine. Also during
this heart wrenching time period, Steve Wakfield, then the
executive director of TPAN, was often busy visiting many members
of the community at the hospital and providing education,
support and other valuable services at TPAN. TPAN served an
indescribably invaluable service during those days. It was
not uncommon for “Ask the Doctorî night at TPAN to be attended
by no less than 100 people. They were thirsty for any advice
to result in their ability to help themselves feel better,
let alone survive.
Was it really 10 or 12 years
ago? Can many HIV-negative community members or the more recently
and newly-infected individuals understand what life was like
for someone with HIV or AIDS 10 years ago, let alone during
the 1980’s? How does one begin to attempt sharing with our
readers this kind of experience? It may be said that it is
unfortunate that most have little frame of reference for life
during those times. One could easily have been a Faust fan,
selling one’s soul to the devil in return for merely understanding
the reasons behind the existence of this epidemic, the reasons
why our community had to endure the loss of many of its closest
friends and the disappearance of valuable talent.
But let’s continue to put
things in perspective. In 1987 there was nothing. During 1988
AZT was approved but still nothing available for CMV retinitis,
the number one cause of blindness for persons with AIDS. In
1989 IV ganciclovir was approved. HIV doctors were constantly
occupied with treating the blood infections that resulted
from infected central lines. Long term indwelling central
catheters were needed for the administration of drugs to treat
CMV retinitis. The ensuing hospitalizations and infections
continued to weaken many HIV positive individuals. Life was
all about hospitals for many of those infected with HIV.
There was the prevailing
hopelessness and a conservative notion of what the standard
of care should be. There were many nights of lost sleep, many
days of preoccupation and worry. However, as a young HIV treating
physician, I could not let my frustration and periods of depression
show. I remained stubborn, putting on my most optimistic face
mask so that one could continue to provide the necessary hope.
I implored patients to obtain alternative sources of treatment.
We used AZT combined with bootleg ddC and a chemotherapeutic
agent developed from a Chinese cucumber known as compound
Q. While compound Q was found to kill HIV infected cells,
it had to be administered intravenously. I could not provide
Q through the medical office or clinic. Patients organized
infusion groups (known as Q groups) at individual homes during
many evenings. I needed to be present and supervise the infusions
and treat the usual and frequent allergic reactions that may
have occurred. I was sure this renegade treatment was effective
since it raised T-cells, sometimes even doubling the count,
and patients often reported improvement in HIV symptoms. Peter
Jennings hosted a special television program on PBS devoted
to compound Q treatment featuring Martin Delaney and the late
Larry Waits, MD. Project Inform issued a bulletin highlighting
the effects and benefits of Q.
Therefore, compassionate
track Videx (ddI), illegal ddC (later FDA approved) in combination
with AZT and often with Compound Q, NAC or glutathione was
more the norm in my practice during those early years. I endured
the behind-my-back criticism by peers and other conservatives,
but knew I was doing everything I could for a very bleak picture.
Viral load testing was not yet discovered. In 1990, Drew Badanish,
one of the founding graphic designers of Positively Aware,
and another TPAN hero, Steve Whitson, who eventually became
Editor of Positively Aware, were some of my heroic
patients. They, along with many others who were taking these
same combinations, made it to the era of protease inhibitors
to talk about it. Many are currently working full time, their
loved ones at their side. They can reflect on those interesting
times and what was HIV drug therapy in 1990.
Eventually, Zerit (d4T) and
Epivir (3TC) were approved, though we knew little of the optimum
way of prescibing these new agents. Trials with thymus immune
globulin and thymic humoral factors, as a treatment to stimulate
T-cell growth and differentiation, came and went. Later we
participated in clinical trials for a new class of investigational
agents known as non-nucleoside reverse transcriptase inhibitors
(nevirapine or Viramune), protease inhibitors, interleukin-2
and Sustiva (efavirenz). As HIV drugs were being added to
the national formulary, we saw less illness and less hospitalizations.
Slowly there was more
hope.
There isn’t a day that goes
by when I don’t think of those times and remember people not
forgotten. I am thankful for the many who survived and made
it to a new millennium. I am grateful for the support I received
from many loyal patients and the same stubbornness and fortitude
that many HIV positive individuals maintained through many
hard times. I hope that lessons can be learned and safe sex
may return to being en vogue. Many of you indeed understand;
fortunately many of our readers have survived those tragic
times.
Daniel S. Berger, MD is Medical
Director for NorthStar Medical Center, Clinical Assistant
Professor of Medicine at the University of Illinois at Chicago
and Editor of AIDS Infosource (www.aidsinfosource.com).
Of recent, he is a medical consultant for Positively Aware
and will feature a regular column entitled The Buzz.
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