Gentle Reader –

I was asked to answer this on Quora (www.Quora.com) and thought it might prove of interest.  Comments are, as always, requested.

AJL

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This is a question that brings back nightmares.  What was it like to care for Patients with  – as it was called at the time – GRID (gay-related immune deficiency) syndrome ? Sheer terror, interspersed with a heavy dose of denial.

Around midnight, sometime in late 1982, Cook County Hospital Admitting Ward, Chicago:

“Doctor Layon, your next patient is here….” was how I learned of the need to return to Admitting from the warmth of my on-call room.  The voice was that of the ward clerk, Reba McLin was her name, a large and motherly woman who seemed to love being on nights……I think because there were fewer supervisors around, which allowed her to “be herself”; and a wonderful woman she was.

Arriving on the Ward (the third floor of the old Men’s Unit, now gone), I am a second year resident in Internal Medicine, responsible for one of several general medical services at Cook County Hospital.  I pick up the Emergency Department admitting sheet – giving detail about why this patient, a young man, had been admitted – and begin walking the, perhaps, 100 feet toward him.  He was lying on a stretcher and even from this distance, I can tell he is sick – I mean “sick” in the way physicians use that word – breathing rapidly, somewhat jaundiced.  At about 75 feet he sits bolt upright.  At 50 feet he massively vomits, at 25 feet he falls back and appears to be unresponsive.  I am thinking, as I continue my, now rapid, walk toward him, that there is no-one here to help me.  If this man has suffered cardiac arrest, it is just me.

At his stretcher, he is in cardiac arrest, so what am I to do ?  I check that he has no pulse – none.  I turn him in his side and clear his oropharynx (mouth) of vomitus – there are no gloves.  And I then start:  Mouth-to-mouth (there are no masks to do mouth-to-mask) breathing and chest compressions.  Although all of this happens in seconds, it feels like slow motion.

This occurs perhaps a year after the New England Journal of Medicine articles describing what we now call HIV disease (then called GRID and eventually AIDS even before we knew of the viral etiology).  We at Cook County in Chicago had a plethora of these cases; we were all scared.  The cause was unknown, although the people we cared for were IV drug abusers, gay, or bisexual; some denied any of these risk factors, and while we thought they did so out of fear or embarrassment, we couldn’t be sure.  Some were from Haiti or were hemophiliacs; the disorder seemed to have something to do with blood, but the rest was a puzzle……drugs, sex, mosquitoes, needles……we were at sea with no compass or chart.

So, as I leaned over to start rescue breathing, I think to myself, as I place my mouth over his: I am committing suicide.

Twenty minutes later, he has had all that modern, 1982-era medicine can offer, and is dead; I am pretty sure we did not get a post-mortem examination, so we never know exactly why he died or what was fundamentally wrong.

But, what was it like……?

Think of everything you know and respect; everything that seems solid, stable, even time-less.  Then think of all of this collapsing on a time-scale so rapid that you can see it.  That is what it was like.

Remember that Mr. Reagan, cruel man that he was, was president of our country.  He and his administration denied this disease, even implied that the people who had it deserved it (please see, among others: And the Band Played On: Politics, People, and the AIDS Epidemic, by Randy Shilts).  This was almost 5 years before C. Everett Koop, the Surgeon General under Mr. Reagan, broke with the Reagan administration policy and came out forcefully in support of education and research for this disease.

You are dying of something we don’t understand and don’t want to acknowledge.  This is what it was like.

Senior physicians, the (mostly) men who were my teachers, wanted nothing to do with these patients.  There hadn’t been anything so frightening and lethal since the influenza epidemic of 1918, and my professors – not all of them, but most – were frightened.

You are dying of something we don’t understand and don’t want to acknowledge.  This is what it was like.

Respected physicians were calling for a moratorium on care to GRID / AIDS patients.  No surgery, even if needed.  No admission to the intensive care unit, even if needed.  ‘Well, they will just die and they might make me sick’.  One of the bright lights battling this attitude was a physician named Cory Franklin, the Chief of Intensive Care Medicine at Cook County Hospital, who argued that if we cared for these patients we could at least improve whatever time they had left.  In Cory’s medical ICU GRID / AIDS patients were admitted and cared for; but he was only one bright spot in an ocean of darkness.

You are dying of something we don’t understand and don’t want to acknowledge.  This is what it was like.

If things were bad with the Reagan administration and the medical profession, they were multiply worse amongst the general public.  You “looked gay”, you were at risk for discrimination and physical abuse.  People thrown out of jobs, out of schools, out of their homes, out of – yes – hospitals (I know personally of one such case, and there were others).

You are dying of something we don’t understand and don’t want to acknowledge.  This is what it was like.

Making rounds one day with my team, one of my junior residents – he considered himself a very religious man – refused to care for a man on our service with GRID / AIDS.  “He did it to himself. His behavior is immoral.  I don’t want anything to do with him.”  I remember looking at this young resident, who I thought I knew; who, until that moment, I respected…..collapse on a time-scale that I could see.  I should have fired him on the spot but, coward that I was, I didn’t.

You are dying of something we don’t understand and don’t want to acknowledge.  This is what it was like.

But there were bright spots, of a sort.  Some of us refused to be swept away by the fear and loathing so prevalent.  I am not sure, to this day, why that was so, why we were so.  Was it because we were “better” ?  No.  Braver ?  Absolutely not.  Smarter ?  Hardly.

There were in the group of us – certainly at County and later at the University of Florida / Shands Hospital where I penultimately landed – who cared for these sick humans a not insignificant number who were “dissenters”.  About the recently ended Viet Nam War (a handful of us were veterans who had gone to medical school after the war), about the way gays / bisexuals were treated (some of us were gay or bisexual), about the way ethnic minorities were treated (some of us were Black and Latin), about the economic disparities in our country (we were all Americans).  We were those who didn’t just accept convention, conventional wisdom.  I don’t mean to make us sound better than we were, but in this context at least – the care of GRID / AIDS patients – we went beyond what most would do.  But what “most would do” was so very abysmal in those days.  So very, very abysmal.

One of my partners discovered and wrote up the first cases of HIV adrenalitis, a relatively uncommon cause of adrenal cortical insufficiency.  He was encouraged, by one of our senior physicians, not to submit the cases for publication because the disorder didn’t really exist.  Unfortunately, he followed that bad advice and some-one else published first.

The very first paper I published was on T-cell subsets in IV drug abusers; this was thought to be of significance for the disease at the time, rather than just a marker of the infection.

In closing……

So, you ask what it was like in those days.  It was like every day life is now, but interspersed with terror.  Was I going to die after doing mouth-to-mouth breathing on that young man ?  Was I going to get sick after the latest needle-stick injury I suffered ?  We were scared, but at a low-level, chronic and ongoing basis.

The sun came up and went down.  We loved and laughed.  We were silly and serious.  We argued and complained.  We were jerks and good people.

But occasionally, just occasionally, a relatively small group of us worked in a way that was considered a bit unusual for the time.  We treated GRID / AIDS patients as if they were just sick people, fellow humans with a new and disturbing disorder, rather than morality-war stereotypes.

Today, it is different, HIV disease is now a treatable chronic disease.  But at the beginning, oh, my friends, at the beginning……