Psychiatr News July 21, 2006
Volume 41, Number 14, page 6
© 2006 American Psychiatric Association
25 Years of AIDS Epidemic: A Psychiatrist Learns to Heal
Marshall Forstein, M.D.
Marshall Forstein, M.D., is an associate professor of psychiatry at
Harvard Medical School and director of adult psychiatry residency training at
Cambridge Health Alliance. He chaired the APA Commission on AIDS from 1992 to
2004.
It has been 25 years since the first AIDS cases were identified. To mark
that grim anniversary, a psychiatrist who has long fought against the
disease's ravages was asked by Psychiatric News to look back on how
treatment and he have changed.
No one "has touched me for six months. Even my own mother won't come
near me." After introducing myself as a psychiatry resident in 1982,
these were the first words spoken through a cascade of tears by a 35-year-old
gay man when I asked how he was doing.
Only a few months before, I had been reading as much as I could about
"GRID" (gay-related immune deficiency syndrome), which had been
recently reported in Los Angeles, New York City, and San Francisco.
After completing my internship in San Francisco in 1980, my partner and I
moved to Boston for my residency at Massachusetts General Hospital. Little did
I know how quickly I would be caught up in the medical care, social activism,
and politics of what we came to know as HIV disease.
The epidemiology suggested that whatever was causing the collapse of gay
men's immune systems (soon followed by the cases of AIDS in other populations)
was sexually transmitted. A decade of sexual liberation appeared to be the
wave on which this disease was riding, a wave that turned into fear and
anxiety that permeated the gay community.
As I became more immersed in the clinical care of people with AIDS, some
colleagues and supervisors warned me about becoming too identified
professionally with this stigmatizing
disease.
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Marshall Forstein, M.D.: "Colleagues and supervisors warned me
about becoming too identified professionally with this stigmatizing
disease."
Courtesy of Marshall Forstein, M.D.
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At the same time I was seeing more patients with AIDS in the medical
setting, we began the unrelenting experience of losing patients, friends, and
colleagues to the epidemic. The Era of Unremitting Grief had begun. We visited
the AIDS quilt that spent days laid out on the vast expanse of the Mall in
Washington, D.C. Amid thousands, in eerie silence broken only by sobbing, and
sometimes wailing, we discovered panel after panel marking the passing of
people we had known. I remember wondering if any of us would survive the
disease or the overwhelming loss. The image of thousands of gay men, their
lovers, friends, and families grieving together on the Mall between the
Washington Monument and the Capitol is forever etched in my mind. In
retrospect, becoming involved clinically, academically, and politically served
as a mechanism to contain my personal fear and anxiety about the epidemic that
was exploding around me.
After leaving residency, I served as medical director of the Boston Gay and
Lesbian Counseling Service. After the discovery of HIV as the causative agent,
I was asked to help develop a counseling and testing protocol for the ELISA
antibody test that Massachusetts's state laboratory was developing. "To
test or not to test" became the dilemma for a generation of gay men and
then for injecting drug users at a time when there was no treatment to offer
for the underlying HIV infection that was almost always fatal.
At that time, testing was encouraged as a way to inform people who believed
they had been at high risk for contracting HIV to change their sexual and
injecting drug-use behaviors. In the absence of a definitive treatment for HIV
infection, only prophylaxis for opportunistic infections was available, and
many gay men believed that testing for antibodies would only further
stigmatize and isolate already marginalized people. Later, the reticence I had
in promoting testing turned to advising testing once we had ammunition against
the virus.
As the epidemic grew in nongay populations, community-based organizations
had to find ways to treat people whose only commonality was being HIV
infected. Increasing numbers of psychiatric patients, intravenous drug users,
women of childbearing age, and children began to constitute what became known
as the "changing face of AIDS." These individuals often found
support in agencies that had evolved in the gay community. While people with
AIDS were quite diverse, HIV infection helped to create political and social
coalitions in the interest of pushing for more AIDS funding for research and
treatment.
In 1985, in addition to seeing AIDS patients at Cambridge Hospital, I had a
half-time private practice that had become about 70 percent people with AIDS.
Few psychiatrists, even in the rich psychiatric mecca of Boston, were willing
to involve themselves in the care of patients with this devastating
disease.
I ministered to a patient population of young, previously healthy,
productive gay men and their partners who had been blindsided by the disease
without even knowing what was coming.
Within six months, about half my patients had died, leaving me bereft,
financially diminished, and trying to sort out how one could tolerate doing
this work with no end in sight.
I began to teach and find ways to contribute without just filling up my
patient hours with people who would die. I learned from my patients and their
survivors how to face a premature demise, and it has not escaped me that my
partner and I soon adopted our first child in the midst of it all.
I began to make lists. One was of close friends in San Francisco, New york,
Vermont, Boston, and elsewhere who had died. One was of patients I had already
lost, and one was of the people we knew who were infected and might all too
soon move from one list to another.
In retrospect, the first of these lists might have been titled "Dear
friends for whom I have not yet had time to grieve." How many funerals
should a man of my age expect to attend? How do I answer patients wanting to
know if I would come to their funeral?
Were it not for patients and friends who taught me how to live in the face
of death, I might have abandoned what had become a major focus of my
professional life.
The words of a patient return to me as I try to capture what it felt like:
"It was like standing in a beautiful field with my friends and lovers
when the shooting began. All around me lay the dead, and yet I remained
standing, wondering how in the midst of all this horror I had been spared. It
makes no sense."
We spent a good amount of time together in psychotherapy trying to
"make sense" of the insensible. Together we bore witness to
preserve the memory of legions of gay men, and later all people, who had
succumbed to this virus.
Today many of my patients are living longer, healthy lives. Remarkable
advances in our ability to treat persons living with HIV infection have
occurred in the past 25 years. Where I was once at the bedside of patients
suffering from tuberculosis, pneumocystis carinii pneumonia, and candidal
esophagitis and managing issues of distress and dying, I now take adavantage
of the availability of viral-load monitoring and a larger palette of
antiretroviral medications and see a decrease in incidence of AIDS and death
from it.
But these trends are also powerful reminders for psychiatrists to continue
to broaden their scope of assessment and intervention. Opportunistic
infections, CNS malignancies, metabolic and electrolyte disorders, and new
medications can all cause significant CNS disease and dysfunction.
However, the ominous sense of foreboding never abates, and people who
became infected in recent years face more complex psychological and social
issues than did the generation that preceded them. and people are still dying
of AIDS, though at a slower rate.
My patients sometimes still wait, unsure about how to go forward with their
lives in the face of the infection still within, though it may be shackled for
the moment.
In reflection, this epidemic has brought forth the best and worst in human
beings. The challenges ahead are unparalleled, with ever-new generations of
young people at risk for HIV, often the most vulnerable and marginalized in
our society.
In developing nations, armies of children born to parents they lose to AIDS
remain unschooled, unfed, unparented, and often armed. No existing social
structures can provide for the needs of these youngsters, who are left to the
kindness of others or to fend for themselves.
As the 25th year of this pandemic passes, I experience the fragility of
life in every moment, committing myself to doing what i can, working through
those lists, believing that one might indeed heal the soul, if not the heart.
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