October 6, 2016
This time, at least the "cure" news broke over the weekend, so I got to understand the science and anticipate the full range of responses and feelings before my week started.
On Monday a psychotherapy client asked, "Did you see the news?"
"Yeah, I saw it." I said, knowing exactly what he was referring to. "What was it like for you to see the headline?"
"It isn't real, is it?" He looked at me, then out the window, already guessing the answer.
I hate these conversations. This client* is a long-term survivor of HIV. He's seropositive, and one of a very few survivors of his circle of chosen family from the early years of the virus, before antiretrovirals and the first possibilities of survival. He understands the nuances of HIV research, understands how to read between the lines of a sensationalized write-up of an early stage clinical trial. And, still, the impact of seeing "cure" in a headline, something we have fantasized about for so long, left him initially hopeful, then crumpled in tears for the rest of the day.
This is the problem with news stories and headlines that are prematurely celebratory at best, and oversimplified, irresponsible and devastating at worst. For long-term survivors, hope triggers a particular kind of trauma made complicated by its relationship to grieving.
Ironically, this particular clinical trial makes use of the virologic "kick-and-kill" strategy, which is a terribly apt metaphor for the process of triggered traumatic memory. However, unlike the idea in virology that triggering the viral reserves makes them accessible to treatment that can target and destroy them, memory doesn't work that way.
Our memories, feelings and grief aren't limited. They aren't eradicated through their triggering. We're felled again and again. Our traumas and memories aren't vanished. With complex pervasive cultural traumas, such as life in plague time -- there is no over. In Post-Traumatic Plague Syndrome, every time there is a promise of a cure, we have a flicker of possibility of an "after." Hope triggers memories of multiple losses: the loss of loved ones and the loss of hopes and visions of a possible life called into question by viral experience.
We learn to cope, to strategize, to remember with grace and gratitude alongside our loss and anguish, and to make meaning from our experiences and reimagine a future: That's the work of psychotherapy. But the relentless activation is exhausting and antithetical to the emotional stability required for long-term resilience.
Later in the week, a younger client came into my office. Also queer, he's seronegative and came of sexual age into a world where HIV had become, for those who have access to consistent and appropriate care, manageable. He's been on pre-exposure prophylaxis (PrEP) for about a year. He said to me, "So, I read this article that there's a cure now, or will be soon. So, does that mean that soon I can stop taking these drugs?"
Some of the fine print of the RIVER clinical trial, not alluded to in the (original "British Scientists on Brink of HIV Cure") headline, is that this trial involves people who are dealing with primary infection, meaning they have been recently infected (within six months). This means that, even if the trial were successful, it has the potential to increase the viral divide further, as diagnosis within six months of infection/exposure requires consistent and appropriate medical care, which is not available to many people in the global community most deeply impacted by new HIV infection, both in the U.S. and abroad.
Years before I became a psychotherapist, I was a member of ACT UP/Los Angeles. One of the national campaigns ACT UP worked on was the AIDS Cure Project, in which we laid out demands for a fully funded and resourced search for an AIDS cure. But many of us also believed that one of the key demands necessary for any cure or vaccine to eradicate the virus globally would be a universal health care system.
Medical discoveries are necessary first steps, and so are clinical trials with 50 participants. But the reality is that even with isolated functional cures and remission stories, we won't have a truly functional cure for the epidemic until we have a cure that is accessible to everyone. Otherwise, a cure for the few just runs the likelihood of increasing the surveillance of those who are seropositive or at risk of infection, as well as increasing stigma across viral load, class and race.
It reminds me of the early months and years after the success of the cocktail was confirmed in 1996. When the headlines blared news of the discovery that might turn HIV into a chronic, manageable illness, three of my most beloved friends had died within the previous year. People like to tell the story of these moments as moments of what if. What if their loved one had made it a few more months? Like everyone who lost people in those early years, I fantasize that if they had just held out a little longer, they might have survived. But the reality is that, lacking accessible health care, most of my ACT UP comrades and loved ones didn't have access to the drugs for a long time.
The truth is, even though I'm seronegative, I'm like my long-term survivor client. Every time the headlines chirp about a cure, I'm visited by ghosts. I look around my chosen family, at my psychotherapy practice and the communities within which I teach, supervise and practice, and I remember all of my long-gone friends.
Here's what the headlines do: They keep us fighting. When our memories are stirred up, we weep, we remember. On good days we take care of each other a little better. We mourn the dead and fight for the living.
Of those three beloved friends of mine who died on the cusp of the cocktail, two were men of color. Two had been intravenous drug users. Two had lived below the poverty line more than once. All three were in precarious financial positions from paying for their health care and medications. Two had been sex workers as young queers trying to survive. If they had lived until the headline announced the cocktail and the end of AIDS as we knew it, it still wouldn't have been true for them. It would have been years before they had access to the medication. Some of our friends made it that long. Many didn't.
The headlines are wrong. The plague as we know it is not over. Not even close.
* In all case examples from my clinical practice, clients' identities and details are changed significantly to disguise their specificity and identity. The issues raised are actual questions and issues from my clinical practice, supervision or teaching.
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