The Persistence of HIV Fear in the Age of PrEP

Damon Jacobs
Damon Jacobs

"But if I have sex without a condom, something bad eventually has to happen."

Believe me, I know how real this thought seems. I sympathize as I see panic in response to reports of one person who acquired HIV while adherent to PrEP (after encountering HIV with incredibly rare Truvada resistance) despite the 60,000+ people on PreP for whom this didn't occur.

My own sexual awakening began at age 14, in the summer of 1985, the same time that Harrison Ford was gleefully displaying his impeccable wounded chest in the movie "Witness," and NBC daytime featured a flurry of handsome hairy hunks in various states of shirtless mayhem. My arousal and fixation on these images made it clear that I was hot for guys, and eventually was going to have to do something with all this lust for fur and muscle.

However, while I was ensconced in these soap worlds, a real-life drama was playing out on the news. Rock Hudson, whom I was familiar with more for his work on "Dynasty" then from his rich movie career, was being talked about everywhere after coming out as having AIDS.

Images of Rock Hudson

Nearly every network seemed to find it necessary to contrast the images of a young, healthy, vibrant Hudson, to the gaunt, ill, and frail man whose body was ravished by this ruthless disease. It became very clear to me at this vulnerable moment that sexual impulses led to illness and death, and if I acted on my desires, that would be me someday.

It took four more years before I would come out and become sexually active. By 1990, when I first moved to San Francisco, I understood that condoms could protect me from "getting AIDS" (the term we used back then). However, I couldn't erase the images of Rock Hudson's tragic and cruel demise. No matter how good it felt, no matter how satisfying the experience, I couldn't subtract the terror of believing that pleasure would ultimately kill me like Rock Hudson, and so many of my new friends in San Francisco.

Although my partners (both HIV positive and those who identified as negative), used condoms in every encounter back then, I still lived from HIV test to HIV test in complete and utter fear that something had gone wrong and I would be next. I constantly and vigilantly scrutinized my body for KS spots that signified the beginning of the end. Every cough, every sore throat, every fever and every night sweat was accompanied by the paralyzing thought, "This is it, I'm seroconverting." I lost sleep, I lost concentration and I lost time worrying.

The Arrival of ARVs

Once antiretroviral medications were available and accessible in the late 1990s, I came to understand that HIV was not so much as a killer as it is a treatable and chronic medical condition. Yet the side effects, especially in the early days, were often worse for some than symptoms of the disease itself. Sexual expression was still accompanied by a sense of dread in the form of "uh oh, is this the time I'm going have to pay the consequences for feeling good?"

It wasn't until I first learned about pre-exposure prophylaxis (PrEP) in 2010 that I could begin to get some distance from the fear.

I learned of the iPrEx trial while I was working in vaccine research in New York City . That was the first study to demonstrate that consistent use of Truvada in HIV-negative people could significantly reduce HIV transmission rates as high at 99%. I was astounded by this report, and decided that this was the best strategy for me to remain HIV negative. I began using Truvada as PrEP on July 19, 2011, and have been using it daily ever since.

PrEP Approval

When the FDA approval came on July 16, 2012, I was waiting for the celebration, the champagne, the confetti. Or at least an acknowledgement by Governor Cuomo. Instead ... nothing.

The news was largely ignored by media, and most agencies, organizations and traditional service providers. How could we have a crucial tool for ending new HIV infections without anyone talking about it?

I thought the largest barrier to people using PrEP was ignorance, and that if people simply learned about it they would grasp the enormity of this opportunity. So I got active and busy. I began speaking to media about PrEP from a consumer standpoint, started writing essays, telling all my family and friends about PrEP, creating a group on Facebook devoted to "PrEP Facts" and even found a way to be included in a front page New York Times article in the Healthline section.

"Finally," I thought, "People are going to know about this, people are going to be happy to learn about this."

Not so much.

Immediately after going public with this information, I received emails from strangers full of hate, venom, calling me a "Truvada whore," "drug pusher," "sex addict," "corporate shill" and one person even called me a "passive murderer."

Literally from day one of starting my PrEP-focused Facebook group I've had people join who wanted to attack people using PrEP, calling us "dirty," "shameful," "compulsive" and "snake oils salesman."

What happened? How could a biomedical tool for preventing HIV with 99% efficacy be received with such vile and hatred?

In all my well-intended educational efforts, in all my fantasies of celebrations and confetti, I overlooked one crucial factor:

The persistent toxicity of fear.

The Theory of Learned Helplessness

Gay men like me have been inundated with traumatic images of Rock Hudson and worse for over 30 years. We have been bombarded with so-called safe sex campaigns that told us that condomless anal sex is immoral and pathological. We have been directly commanded not to "trust him," that "no glove = no love," and that not using a condom 100% of the time is tantamount to signing up for a life of isolation, alienation, depression and illness.

Our brains are wonderfully resilient yet woefully stubborn. Human minds are incredibly adaptive yet often so resistant to change. The psychology theory of "learned helplessness" describes what typically happens when a human being is exposed to a negative stimulus over an extended period of time with no escape. Eventually he or she will give up trying to avoid the source of pain, and accept they have no control over the outcome of a situation. And even when they are given a way out of a horrendous or abusive circumstance, they often choose not to let go of it, and/or respond with rage to the prospect of being free.

I have seen this dynamic play out repeatedly in forums where reactions to PrEP range from suspicion, to cautious trepidation, to ubiquitous fear, to intense rage.

"What about the side effects?" "What about STIs?" "Who can afford this?"

Even when there are scientific protocols and programs to prevent, manage and assist with these concerns, people are still jumping to the worst one central scenario: "If I have sex for pleasure, something bad will happen."

And I can completely understand how that operates. The first year I used PrEP and had condomless sex with both HIV-positive, and HIV-negative-identified partners, I still carried that fear. My 40-year-old mind simply could not absorb that feeling good wouldn't result in a painful outcome.

Once that first year passed, I fully understood that PrEP would protect me from HIV. But then -- what about those other STIs?

STI Panic

I noticed that for the first time in my life I started to worry a lot about getting an STI. In all my panicked nights prior to PrEP, the thought of having an STI never crossed my mind, but now it was suddenly haunting my interactions with others.

"What if this is it? What if he gave you syphilis? What if he gave you gonorrhea? There is simply no way you can have this much enjoyable sex without having to pay SOME kind of price for it."

During the first half of 2013, I flooded my poor doctor's office with calls. My butt was red, my ass itched, SOMETHING had to be going wrong down there. And my doctor, bless his soul, was more than willing to swab and test as needed. But test after test, time after time, there was no STI.

Indeed, my displaced fear and trauma of AIDS had manifested itself in psychosomatic symptoms of syphilis. My mind was still engaged in the learned helplessness of punishment for pleasure, long after that danger was gone. I finally began the process of completely removing fear from sexual encounters, and opened up to receiving the bliss of condomless intimacy with others.

So today, when I look in my PrEP Facts group and see people responding to fears of a sneeze or a headache or a rash, believing that PrEP had failed them, that some mutant ninja version of HIV will inevitably pass through the Truvada barrier, that STIs are waiting in the wings ready to pounce on them, and that there assuredly must be a penalty for pleasure, I sit back, I read, I understand.

And I'm not surprised to see panic about the recent story about that one case of someone acquiring HIV while adherent to PrEP -- and am committed to sharing correct information about why and how it happened, and how incredibly unlikely it is to be anything but extremely rare.

I witness how 30 years of anti-sex based messaging is still impacting our community today. I try to interject with rational facts, data, science and trials, but that seems to come as little comfort.

These are the direct and tangible side effects of fear. And they may be here to stay.

Fortunately, there is a way to cope with these side effects.

Breathe. Relax. Learn the facts about PrEP. Get support from others in your community, as well as social media. Find a sex-affirmative therapist who understands PrEP and the impact of HIV and AIDS on learned helplessness. Eventually with time, experience and willingness, you will also come to relearn that your body can be a way of experience much joy without fear.