A Memoriam and A Reckoning

Thirty years ago today, the man seated at the left died of complications from AIDS. The man standing on the right is me. This photograph was taken six weeks before he died. We were just 31 years old. Last week, the Food and Drug Administration for the first time approved a cancer therapy for an indication not based on the part of the body being affected, but rather for use with any solid tumor possessing a specific genetic feature.  The treatment is commonly referred to as an immunotherapy. The two events, thirty years apart, are linked.

Three decades is a long time. In the years just after a loss, the pain is very fresh and raw and the overwhelming feeling is one of sadness. Over time, the sadness never goes away, but it shares the space with other emotions. Perspective comes into play, thankfully.

During the cab ride to the hospital that last time, he reached across the seat and said that he wished we could get married. I replied that we would never live to see that day. A few days later he was gone.

Afterwards in 1993, I attended the IXth International AIDS Conference in Berlin, Germany where they keynote speaker stated that in order for the epidemic to change course a treatment would have to be oral, effective and cheap and that nothing like that was on the horizon.  I was present again in 1996 at plenary session for the XI International AIDS Conference in Vancouver when speaking of the potential promise of new treatments, Dr. David Ho uttered the words “eradication of the virus” and you could hear a pin drop in the room.

Joe died at thirty-one years of age. He is young, frozen in time. I have aged thirty more years – also something I did not entirely anticipate.

When the epidemic began, science and medicine knew very little about viruses and very little about the immune system. Many people would die while we would learn about both.

And so there are two points to make.

The first is that there are moments in life where something is seemingly impossible – where you are so caught up in what is happening in the moment that it seems as if it will never end and that things will never change. It does end and things do change though. Good happens if you are patient for it. You will see things you never expected you would live to see.

And the second is that but for the ugly, ugly thing that was the AIDS epidemic, it is highly doubtful we would have drugs that are administered to people that help their own immune systems fight cancer – a therapy held out as hope, but which many did not think would come to pass.

A Memoriam. A Reckoning.

Photograph by Janet Beller

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4 Responses to A Memoriam and A Reckoning

  1. Claire says:

    Thank you for this, Mark. Our inclination to see progress as a forgone conclusion fails to recognize the audacious and mind boggling leaps over the “impossible.” It’s not our species’ brain’s best feature.

    And thank you for noting the second point too. Once again, we learn what we were told in church and school: our fortunes are linked, and John Donne was right. No man is an island, entire of itself. And while any man’s death diminishes, our gains are shared as well.
    We owe the generation of activists like you a great debt.

  2. Peter says:

    Beautiful and brave…thank you for sharing this with the world.

  3. Meg Wholey says:

    It seems there’s almost no chronic disease involving the immune system: rheumatoid arthritis, multiple sclerosis, certain skin conditions – that isn’t being addressed with targeted immunotherapy at this point. I, too, thought the epidemic would never end, and that my professional life would be constituted by work with people dying too young. Attending the 3rd International AIDS conference in DC was my first experience of seeing the crossroads of science and politics. I’m glad life is long – in the Cancer Arena, I wish we’d share our attention and support between prevention and treatment.

  4. Jeff Davis says:

    Thank you for this. I am so sorry for the pain you have endured and the loss of Joe. I hadn’t read this perspective before and really appreciate your sharing.

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