Scientific American: Early tests can be falsely negative

from – Porn stars all across Fresno were told to put their clothes back on and go home a couple of weeks ago on the news that a 29 year-old adult actress named Cameron Bay tested positive for HIV.

Shortly thereafter, the Internet lit up. News, judgments, and jokes shot left and right in newsrooms as freely as bodily fluids fly on set. Countless reporters and pundits surely worked overtime to do the deep background: who were Ms. Bay’s co-actors, who did what to whom, and inquiring minds want to know: were condoms used? Imagine the frenzied speculation, all those sticky keystrokes.

Don’t get me wrong: the details of the whodunit have medical import. Public health workers need to find who is at risk.

Those who are at risk need testing and education including reminders that early tests can be falsely negative and must be repeated. Since this isn’t the first case of HIV among the scantily clad actors of Fresno, CA, Ms. Bay’s diagnosis demands we try again to get porn stars to practice safer sex. My guess is legal maneuvers will never do much to affect the sex lives of the nude and infamous, but if porn viewers could learn to have fun even if with a condom on set there might be a hope.

Twitter captured all this and more. It showed the diversity of our reactions to Ms. Bay and people like her. Some tweets expressed a sense of inevitability:

Some were judgmental. Others were pragmatic. Many were unprintable.

Something important is lacking though: concern for Ms. Bay. This young woman just learned that she has an incurable and potentially lethal disease. Our first emotion, I think, should be concern. We should commiserate. We should be grateful for our health and hopeful for hers. Here’s a rare example:

Undoubtedly, it was Ms. Bay’s responsibility to protect herself. Abstinence, Being faithful and Condoms are the ABC’s of HIV prevention. But since millions contract HIV every year despite knowing their ABC’s, I’m going to go out on a limb and say it’s not always that simple. Sex is complicated, and not fully encompassed by logic, willpower, commonsensical public health messaging or a few square inches of latex.

Porn stars, too, are easy to oversimplify. Dressed (at least temporarily) in garish or stereotypical costumes, they have sex on camera, they say things most can’t imagine saying, and they behave on screen like simplified primal versions of the complicated people of ordinary life. We project a mixture of desire, disdain, and pity on them, and often we forget to consider the person under all that exposed skin.

I learned this from Jose*, a patient in my HIV clinic. Jose was a muscular guy who wore tight black shirts and a jet-black goatee. The list of movies in which Jose engaged in unprotected anal sex was long. Very long. None of the titles can be repeated here so let’s just say somebody is making good money dreaming up new variations on the Bareback Mountain theme. I asked Jose once how many men he’d had sex with in his life, and he said, “Gosh, I really have no idea,” as if it had never occurred to him to count. He estimated several hundred with a shrug.

I met Jose when he left California to be closer to his family, and “to escape the crazy life” of adult entertainment. Despite a grocery bag full of pill bottles, Jose’s immune system was gone. HIV ran freely now. Jose said he was taking his medications at first but then, months later, admitted his adherence was haphazard at best. One day he confessed he had stopped altogether.

Jose seemed as mystified by his cessation of treatment as I was. But he confessed that his identity was so wrapped up in virility and the desire of men and women alike that taking pills for a deadly illness was intolerably antithetical to who he was.

He lived life in the moment. He hung out with his sister and visited her two young daughters after school. He moderated family squabbles and tried to keep a nephew out of jail. He worked as a patient transporter at a local hospital. He dreamed of becoming a chef. And he waited. Jose knew AIDS would get him, soon.

Periodically I treated the advancing horsemen of the AIDS apocalypse: the warts that blossomed on his fingers and genitals, a case of pneumonia, a skin infection from a fish tank. I also listened to him as he faced death.

One day he showed me a dark purple spot on his leg. We both knew what it was even before the biopsy results came back: Kaposi sarcoma (KS). At first the KS was a painless purple memento mori, but more spots appeared higher up his leg and soon came to clog the lymph channels that drained that leg. Soon, his leg had swollen so badly he could no longer fit his foot into shoes.

The KS marched on. By the time KS filled up the lymph nodes in Jose’s chest and crept into his lungs, Jose’s face was thinning and his enviable physique had begun to waste away. When breathing became difficult, Jose cut back to part time work. He didn’t want to quit entirely; he said he liked helping patients get oriented to the hospital, especially the ones who were there for the first time. He knew it could be a scary place. Throughout, Jose was resolute and cheerful. He enjoyed board games with his nieces. He traveled. He slept. And he waited.

When Jose went on hospice I had been a physician for ten years. I had seen many people die. But I had never seen someone face death so unflinchingly, so calmly. Jose was afraid, absolutely. But Jose was also courageous and determined to hold his head high to the end.

Jose made it impossible to oversimplify him. He died nearly six years ago, but I thought of Jose immediately when I heard about Cameron Bay’s HIV diagnosis. Without the memory of Jose, I might have dismissed Ms. Bay as a fool and a degenerate. What was she thinking?! But Jose taught me not to reduce her to a character on a stage, and not to pretend I know very much at all about Ms. Bay and the complicated life she leads.

Soon after Ms. Bay revealed her HIV diagnosis, her boyfriend Rod Daily announced he too was infected with HIV. Sigh. It turns out Ms. Bay might have been infected the old fashioned way after all: by living life and having sex in the midst of an HIV epidemic. This week a third porn star tested positive for HIV, and another porn set was shut down. Temporarily.

Not only is it tempting to have an oversimplified view of how porn stars get HIV, it is also easy to oversimplify the relationship between HIV in porn stars and the worldwide HIV epidemic. Porn stars are not the cause of the HIV epidemic. They are its public face (et cetera). We could arrest HIV transmission entirely in the porn community, yet HIV would rage on around them. Porn stars, like all of us, make bad decisions and suffer hard consequences. They deserve our compassion, and I hope they get it.

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