Triumph, Complacency, and How to Survive a Plague
By David A. Wohl, MD – March 6, 2013
When I was in prison last week (no, I am not a former Governor of Illinois), seeing patients in the state maximum-security facility, I strode in with more than the usual ‘don’t mess with me’ swagger – my eyes focused ahead of me with a dragon slayer’s intensity. It was not all an act. I felt newly empowered and bold. The previous night I watched ‘How to Survive A Plague’, a documentary by David France about the founding of ACT-UP and the early days of the HIV epidemic. Nominated for an Academy Award (you can stream it instantly for free on Netflix), the film is less than artful but is a looking glass to a terrible and frightful time that I must admit, I rarely think of now.
I had been a medical student and resident during the early nineties and in the middle of that decade an Infectious Diseases fellow. I know very well what the plague years were like. However, the hollowed faces of my first patients and their quiet struggles to survive have become a gauzy memory, overlaid with a decade and a half of phoenix-like recoveries, a cornucopia of glitzy new meds, and the radical concept of geriatric HIV medicine. The complacency that comes with worrying more about a patient’s blood pressure and LDL cholesterol levels than their CD4 cell count, only adds a layer of top soil on these buried memories. But the film’s extensive footage of buyer’s clubs and KS speckled young men, protest marches and mimeographed treatment guides, reminds me of where this all began.
My first patient of the day was a large older man, recently incarcerated, who had been seen in the clinic only a couple of times before. He slowly sauntered into the room, shuffling a bit from side to side and then wiggling a bit as he shimmied to sit on the exam table. Prison-issue eyeglasses magnified his life long disconjugate gaze making it difficult to know which eye to look at – I played it safe by talking to the bridge of his nose. His lab report told a modern-day story of early diagnosis: a CD4 cell count over 700/mm3, a viral load in the 4-digits. When he was first diagnosed on admission to the prison, he had been told he was too healthy for HIV medications. But at the last visit, my colleague told him that thinking about therapy has changed and that we were treating HIV pretty much in everyone without long delays. He was told to prepare to start HIV medications. I too explained the evolving science, the change in the way we had come to regard uncontrolled viremia as, well, uncontrolled, and potentially harmful to the patient as well as others.
People in prison, it will come as no surprise, are not generally the trusting type. They lie and are lied to. It’s a means of surviving both inside and out in the ‘world’. I could tell he was considering carefully whether I was a quack or worse. He grilled me about alternatives to the meds, food requirements, interactions between these and his blood pressure and diabetes medicines. “What was the name of that three in one pill again? No, the other one,” he asked more than once.
Like most everyone starting medications, he wanted to hear all about side effects and what horrible things the pills I was pushing could do. It was then that the images from the previous night ran through my head. With my mind’s eye I saw the crowd of activists that demanded a new wonder drug called ddI, the bags of ganciclovir and foscarnet that people pushed on poles to fend off blindness from CMV retinitis, the desperation to take anything, even dextran sulfate, to slow the consumptive fires of AIDS. I replayed the most dramatic scene of the documentary when the perpetually gray and grizzled ur-activist Larry Kramer quieted a room of squabbling members of a disintegrating ACT-UP by screaming “Plague! Plague!” as one would announce an approaching tsunami; snapping the bickers to stunned realization of what they had lost.
I looked my patient straight in the bridge of his nose, and with a steely reserve in my voice channeled Larry. Had you cancer, I told him slowly, I would pour chemotherapy into your veins, make your hair fall out, and have you puking into your steel toilet after each dose. And, you would thank me for it. You have an infection that left untreated, kills, and that has no cure. But, it does have a very effective treatment – and one pill a day, at that. So, if this pill makes your elbow itch or your hair glow in the dark, so be it, as it will let you live a long time.
Just like that old craggy Larry Kramer, I made my point and my audience of one was quiet. Until, he said, eyebrows raised, “It will make my elbow itch?”
We talked a few minutes more and we finally settled on an antiretroviral regimen that I thought would work well for him. He reluctantly walked out and looking at his back I thought about how he could not realize all that it took to get him that one pill: the small group meetings in Greenwich Village and San Francisco, the bull horns, the shouting, the die-ins, and the eventual response of the treatment community including regulators, pharmaceutical companies, and clinicians. Perhaps all persons living with HIV should see this film. Certainly, their providers should. But, warning, may cause self-righteousness and intolerance for whining.
A version of this article has been posted on the Clinical Care Options (CCO) website along with additional clinical thought posts by Dr. Wohl and other HIV care experts. Go to: http://www.clinicaloptions.com/HIV/Treatment%20Updates/ClinicalThought.aspx