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Being on Both Sides of HIV

Fall 2005

Being on Both Sides of HIV
I remember the first time I read about a new clustering of odd infections and cancers among urban gay men. Even then, in 1981, I recall a feeling of uneasiness and dread coming over me. Initially drugs and lifestyle were blamed. As the epidemiologists did their detective work, it became clear. We were dealing with a new disease, one for which we were woefully unprepared.

As a physician and a gay man, I monitored this story as it slowly developed. It was both fascinating and horrifying. Those of us in medicine and in groups at-risk obsessed about it, argued about it, worried, and waited. By the mid-1980s, the disease was no longer something we just read about. It was here. My patients and my friends were getting sick.

It is painful to search my memories of the time between 1985 and 1995. Treating people with HIV certainly was not what I had envisioned for myself as a family practitioner. I remember the frustration, the futility, and the loss -- the unimaginable loss. Medically, we had so little to offer. We became good at preventing everything we could, treating what was treatable in terms of opportunistic infections, and preparing our patients and ourselves for the day when all of that failed. By the late 1980s, a medical practice devoted to AIDS was one in which human suffering and death became commonplace. Our patients coped regularly with blindness, disfiguring tumors, dementia, uncontrollable diarrhea, and that awful experience of simply wasting away. People turned to all kinds non-traditional remedies out of desperation, and for the first time American physicians learned there was a role for such remedies.

Those of us treating HIV/AIDS coped with the emotional burden in different ways. We had to maintain a professional demeanor and as much optimism as we could muster, but it wasn't easy. I had to stop going to funerals at one point. It was just too hard. All of us had to build up a sort of emotional barrier; otherwise, we couldn't have faced the reality of the epidemic on a daily basis. Among the care providers whom I know personally, I still see the emotional scars of that experience.

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In 1987, I recall seeing something that instilled my first glimmer of hope. I had a patient with dementia for whom we were able to get the new drug AZT. After only a few days on the drug, his dementia got markedly better. The effect was short lived, but clearly real. I knew then that it was a waiting game. Treatments would come with time. Medical science had a path to follow.

One of the things that strikes me as remarkable about the HIV/AIDS epidemic was the timing. The disease hit just at a time in history when science was developing tools to identify and treat viruses. Treating viral diseases was the frontier of medicine.

We could target viral enzymes exclusive of their human counterparts. Computer modeling of molecules was feasible. By "accident," we discovered how to amplify viruses and count them, allowing for an immediate determination of a drug's efficacy. What if AIDS had hit 20 or even 10 years earlier? The serendipity of these events has made me question coincidences forever.

In 1995, the battle came to my doorstep. I had the odd experience of being on both sides of the equation. That year I had to stop practicing medicine. At the time I took the shock fairly well. I was very sick and no stranger to the processes and expectations that went along with this disease. My disease hit me hard. I had a couple of close calls. I'm here today because of 2 things. I had one of the best doctors in the business, and I did everything he said. Joe Gathe is my friend and my doctor. Joe has not only one of the keenest minds in HIV medicine, but also something that can only be called instinct. Joe's hunches are almost always right and his experiments usually work. I have been the benefactor of both.

Being on Both Sides of HIV
In 2000, thanks to Joe and the generosity and guidance of Katy Caldwell (executive director) and Gordon Crofoot (then clinical director) at the Montrose Clinic, I ventured back into the thing I love the most -- practicing medicine.

It's a different world now.

For someone with my history, the ability to offer the treatments we have today seems nothing short of miraculous. To be sure, the drugs are hard to take and the side effects can be tough to live with, but we are alive. I find myself having to remind my patients that these drugs, problematic as they may be, are the only things preventing the progression of a disease that, otherwise, will almost surely kill them.

But tougher still is understanding how or why people become HIV infected now, especially those who are fully aware of the risks. This I will never understand. How can someone give up the one thing I would give everything to have back?

I turned 50 this year. HIV disease has dominated my existence for half of my life. After 25 years of HIV/AIDS, I hope we can remember all that we have been through and all that we have lost. And, I hope we have learned something in the process.

Wayne Bockmon, M.D., is an HIV-treating physician and medical director at The Montrose Clinic in Houston.





  
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This article was provided by The Center for AIDS. It is a part of the publication Research Initiative/Treatment Action!. Visit CFA's website to find out more about their activities and publications.
 

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