AIDS at 25: An Epidemic of caring

[Guest guest]

AIDS AT 25: AN EPIDEMIC OF CARING

By ABRAHAM VERGHESE

San , June 4, 2006

A quarter-century ago this week, when the Centers for Disease

Control first reported the affliction we now know as AIDS, I was a

25-year-old medical resident. While I didn't even notice the report

at the time, the milestones of my life and medical career - and of

thousands of other doctors like me - have since been inextricably

tied to the history of the virus.

By 1983, when I moved to Boston to begin specialty training in

infectious diseases, I was well aware of AIDS. Like so many young

doctors at that age and in that era, I was caught up in the " conceit

of cure " : the hubris that made us feel that science could find an

answer to most things. On my first weekend on call at Boston City

Hospital I saw my first AIDS patient, a man about my age, and though

I have since seen hundreds (perhaps thousands) of people with

H.I.V., the image of his anxious face is indelible in my mind.

What followed over the next 10 years was a war, a long siege, with

many casualties - every patient I saw would probably die from the

disease that brought them to my office. Like a combat veteran, I

find myself compelled to describe to my current medical students

(most of whom were not born in 1981) what it was like: how the

metaphorical veil of shame and secrecy that traveled with this virus

tainted everything; how being an AIDS doctor could distance you from

other doctors, and even from friends.

When Gallo and Luc Montagnier (or Luc Montagnier and

Gallo - a side story) discovered the human immunodeficiency virus,

it felt initially like the siege had been broken. But in fact, the

blood testing that followed simply revealed the enormousness of the

global problem.

While other specialties had their spectacular cures, their

breakthroughs, it seemed as if those of us in infectious diseases

had taken on the mantle of cancer doctors (except that oncologists

uniformly had more cures and far better results than we did).

My generation of infectious disease physicians - most of us male and

heterosexual - found ourselves transformed not just by disease but

by the unique population of patients we encountered. We were more

homo-ignorant than homophobic. The battle did not make us just

empathetic; it left us with a deep regret that it took a disease

like this for us to understand how much we could learn from gay men.

My patients taught me about courage, about bravery, about organizing

for a cause, about dying for one. They left me with an abiding

conviction that has not faded the armor to shrug off the slings and

arrows of pettiness and malice that we all encounter: there are

bigger things at stake in life than just your happiness or mine.

We became zealots for the cause of our patients, even if zeal was

all we had to give. We had no cure to offer, and so we began to

leave the thresholds of our medical-industrial complexes and visit

our patients in their homes, at their deathbeds. Paradoxically we

discovered that our presence, our promise not to desert our

patients, our continued care brought about a sort of healing, by

which I mean helping the patients come to terms with their illness,

with their deaths, and meanwhile diminishing for them the sense of

spiritual violation that any serious disease brings, none more than

this one.

I went at great personal cost to the international AIDS conferences;

I watched with awe as politics eclipsed science and as gay activists

rattled the cages of stodgy government entities like the Food and

Drug Administration, and got results. I took my young sons to so

many memorial services, for Jim, and - men who were my

patients, but who were also volunteers in our clinics, who were

fellow soldiers in this battle and who were my dearest friends.

These men all died, and though they never lost hope, I did, as one

drug after another failed to live up to its promise. I became a

therapeutic nihilist. I did not think I would live to see the day

when we had something that could really control the disease and

extend life. When that moment came in America, with the drug

cocktails in the mid-90's, I cried for all the patients I had known

in four cities who would never have the Lazarus-like resurrections I

could now bring about.

H.I.V. clinics changed. From being poignant settings full of brave

laughter in the face of great tragedy, clinics were now all

business, all about side effects and drug resistance. Don't get me

wrong - I would not want to go back to the old days. But once

treatment was available, the challenge seemed to be elsewhere.

Today I see so many of us who came of age at the same time now have

one foot in Africa or Asia, as if we need the the kind of challenge

we once faced here. It is as if we have carried the lessons of the

AIDS protest group Act Up abroad, to prove that one can make a

difference even in a poor country, one can find ways to pay for and

distribute drugs, one can make an impact on transmission from mother

to child.

I refuse to dwell on the numbers, the dire predictions and the

pessimism about a vaccine; though I am sure there is some truth to

all of that.

On my desk I keep a picture sent to me by a friend, Rick Hodes, a

doctor who has spent his professional years in Ethiopia. It shows a

beautiful, chubby-cheeked Ethiopian child, wearing colorful local

dress, and holding in his hand a photograph of a scrawny skeleton in

rags. The photograph is of his former self, taken a few months

before he got the H.I.V. medications that Rick scrounged money to

buy. Victories are now to be won in that fashion, one child at a

time.

I wonder now what I would have done if I had known in 1981 that AIDS

would be as huge as it turned out to be. I am ashamed to admit that

I might have gone into another field - say cardiology or

gastroenterology. This is why I have such optimism for the future,

because I meet so many students and residents now who, knowing the

magnitude of the problem, are still going into infectious diseases.

They want to do something about global health, and have put their

money where their mouth is by volunteering abroad before medical

school.

I think perhaps that is the legacy of my patients, the legacy of the

nurses and physicians' assistants and social workers who taught me

so much, the legacy of people from all walks of life who toiled

against AIDS when there was no hope. My students seem to know what

we had to so painfully learn: the secret in the care of the patient

is caring for the patient.

__________

Abraham Verghese, the director of the Center for Medical Humanities

and Ethics at the University of Texas Health Sciences Center at San

, is the author of " My Own Country " and " The Tennis Partner. "

New York times. nytimes.com