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The Persistence of HIV Fear in the Age of PrEP

March 2, 2016

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.

Damon L. Jacobs, L.M.F.T., is a New York-based licensed marriage and family therapist and HIV prevention specialist and founder of a 13,000-member Facebook group "PrEP Facts: Rethinking HIV Prevention and Sex." Follow Damon on Twitter: @DamonLJacobs.

Copyright © 2016 Remedy Health Media, LLC. All rights reserved.

More From This Resource Center

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Do HIV-Negative Gay Men Need Condoms if They're on PrEP? Here's What I Tell My Patients

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This article was provided by TheBody.

Reader Comments:

Comment by: Rob Green (Lausanne, Switzerland) Thu., Jan. 5, 2017 at 3:01 pm UTC
My husband/partner/whatever you want to call us, is a doctor specializing in the field of STI's. It's great to use but in combination with safe sex practice. This drug does not prevent someone from contracting other STIs. Safe sex is still the best practice. It's foolish to think otherwise.
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Comment by: Hans Schuppert (Amsterdam, the Netherlands) Tue., May. 10, 2016 at 5:36 am UTC
Hello Damon,

Thank you very much for sharing your story. I'm on PrEP now for a few months and I recognize so much. It is almost my own life story.

Greetings from Amsterdam,
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Comment by: Anonymous Wed., Mar. 9, 2016 at 3:44 pm UTC
Since you've co-opted HIV websites to advocate "gay (HIV-) sexual liberation", how would you feel if every single one of your sites were overwritten by, say, men's rights activists demanding male birth control?

It is a relevant question, as most of what you write seems to come from a place that presumes your own privilege, while casting yourself as victim to an audience that has experienced far greater levels of hardship. It is self contradictory and tone deaf. As a white person with HIV, I wouldn't dream of writing to a magazine for black people, talking about criminalization. I wouldn't dare publish an article in a women's magazine telling them about the slut shaming of poz guys.

So I ask, with all sincerity, have you done anything for people living with HIV lately? Have you told your followers to curtail their stigmatizing language before you announce pain at the phrase "Truvada Whore"? Have you suggested that HIV+ men who question PrEP may not literally want other people to become positive, before complaining that you've been accused of spreading disease? I've read no shortage of articles focusing on your unique brand of pharmaceutical-fueled sexual freedom, written in magazines read by people who have died and bankrupted themselves trying to get these same drugs which they need just to live. In this time, I've observed a conspicuous absence of regard for people living with HIV. Let alone the disenfranchised communities that are predisposed to contract the virus. It's almost as if you perceive HIV-and by extension all existence-through the narrow optics of your own desire to get off.

Advocating your own interests is only empowering to a point. As someone who regularly reminds his audience he is a Licensed Marriage and Family Therapist, what would you call someone who continues beyond that point?
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Comment by: Kevin Paul (San Diego CA) Fri., Mar. 11, 2016 at 8:00 pm UTC
I be so confused by the article and by this response. So much angst!!! Gilead's social media advertising campaign seems to be working very well.

And "with all sincerity," how long does my brave friend Anonymous, expect the gay community to 'do for' "people living with HIV?" It has been 35 years. Stop with the passive disregard for HIV infection. I survived the 80s and the 90s without PrEP. My grandmother always said, "Never leave home without your rubbers."

Comment by: Don Wendek Wed., May. 4, 2016 at 2:15 pm UTC
Some of the most passionate advocates for PrEP are people living with HIV. If you spent some time in the Facebook group "PrEP Facts," founded by Damon, you would find that a sizable percentage of the members are HIV+. They find consistent support there, and everyone is open to learning from their experience. Damon actively facilitates this dialogue and does not tolerate an ounce of stigma or serophobia.

The result is that positive and negative men are connecting in unprecedented ways -- sexually, intellectually and emotionally. Guys on PrEP know more about the poz experience than any other HIV-negative people I know. Can they relate 100%? Of course not. But on balance the uptake of PrEP, and advocacy by people like Damon, is doing more to break down those barriers than any anti-stigma ad campaign.

I fully understand the need for the poz community to have its own spaces. They exist. But I don't think that the HIV news media can be deemed among them. They are not analagous to the black media -- they cover science and medicine, not just a community.

Everyone has an interest in following developments about the epidemic, and PrEP is an extremely important one.
Comment by: Anonymous Wed., May. 18, 2016 at 11:57 am UTC
Don, some of "the most passionate advocates for PrEP" are HIV+ "thought leaders" who are increasingly denounced by the rest of us. They don't do anything for those with HIV, they've abided a complete lack of recent progress for people with HIV. Since literally every single gay and mainstream website already ignores people living with HIV and our needs, what should be a place for those of us with the virus, if not ones dedicated to HIV specific news? The HIV- already monopolize every single other media forum, with specific sites dedicated entirely to PrEP. Do we really need every single HIV news sites to devote nine out of every ten articles to PrEP too?

As for "PrEP bringing people together", you really don't need to go any further than the same computer you're using to see that PrEP users are engaging in the same sort of discrimination we've been seeing for decades. 20 years of proof that HIV treatment renders people uninfectious didn't make a dent in stigma, why should we delude ourselves into thinking that a prevention pill for the negative would be any different when we can plainly see that's not the case? Honestly, some of the most bigoted behavior I've seen from the HIV- has consistently been from PrEP users, and most of the HIV+ gay men I know agree.

As for Kevin Paul, the HIV- troll who blames people with HIV for having the virus one minute, then happily acknowledges that he's on PrEP...dude, it's already been explained to you that you don't get to be on PrEP and blame HIV+ people for having the virus. I don't know of women who happily blame unwed mothers for not abstaining one minute, then toss back birth control the next. Show some integrity! The gay community owes people with the virus logical consistency, compassion and the allowance to fight for ourselves, the lack of which is evident in what you write.

Comment by: Michael Irwin (London, UK) Fri., Mar. 4, 2016 at 7:18 am UTC
Latest research indicates that HIV+ people die, on average 13 years younger than their HIV- peers. I understand that many people pop a pill daily for years and continue to enjoy rude health. Others of us aren't so lucky. I got ill when I seroconverted eight years ago and never fully recovered. I am not alone. Any condition that knocks years of your life is a killer condition. This is still a killer illness.
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Comment by: Drumstick (Canada) Thu., Mar. 3, 2016 at 9:25 pm UTC
Dead on. Living with this fear of sex/pleasure for so long has warped the perceptions of my generation. Like a Japanese warrior coming out of the jungle. We refuse to release our fear. To put our guard down. Until we start addressing the fears of HIV negative men, we never going to make any progress because they see it as all or nothing game. Tackling stigma for poz guys is easy. Tackling fear among neg guys to help them make the right choices is another.
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Comment by: john beach (scranton, pa) Tue., Mar. 8, 2016 at 4:47 pm UTC
I contracted hepatitis about 3 years. I came out late in life, and had a blast, did all the parties, clubs, lots of sex too. i always used condoms, I NEVER barebacked but some how I screwed up. I am now terrified of having sex and have not had any since my diagnosis three years ago. I'm just so afraid to get another disease or worse, hiv.

Comment by: James Xavier (Los Angeles. ) Thu., Mar. 3, 2016 at 3:10 pm UTC
This is just a small section excerpted from a dialog I had in a PrEP post with a 34yo gay male. This hysterical rant went on for 4 long posts in response to my writing basically the same thing Damon just posted:

Gay sex WAS literally diseased at one point in our gay male history (late 1970s / early 1980s). a new disease was killing gay men left and right and nobody even knew what it was called at first, let alone how to treat it.

Denying history because you don't like the sound of the word "diseased" is stupid and ignorant.

You say "heterosexuals aren't given the same message" about condoms and? so what? life isn't fair. the bottom line is that, scientifically speaking, anal sex is the riskiest form of sex (compared to vaginal, oral, etc etc) because the human anus is very easily torn internally and becomes an easy pathway for almost any disease possible.

We need to get people to see the old school STIs for what they are, just another virus like the flu". if you truly believe this, you are exactly what's wrong with the gay male community right now. antibiotic resistance is becoming the single biggest health crisis of the 21st century for ALL people, gay and straight alike. do you know how serious this is? your attitude is "who cares if you catch something, there's a pill for that" and i'm here to tell you that soon there WONT be "a pill for that", because the diseases -- spread by people like you who share this kind of reckless, immature, completely selfish, casual attitude towards sex -- are going to develop drug resistance after more and more people overuse more and more antibiotics after getting infected.
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Comment by: Derrick Woods-Morrow (Chicago) Thu., Mar. 3, 2016 at 5:50 am UTC
Damon as part of your Facebook group I truly appreciate all you've done for the community. I didn't grow up in the 80s/90s as a gay man, I simply was a young boy of the 90s who came out in the 21st century, but I've had my fears as well. Most of which have been dispelled after two years of Prep adherence. I wanted to ask a question about the recent case. I consider myself a scholar, often exploring rhetoric, supposition and semiotics in my graduate school work. The more I read the recent article about the person who seek converted the more I read the language as bad journalism, poorly worded, full of supposition with a ridiculous amounts of blindspots. It leaves me to wonder if I am uneducated, which I am not, or if the story seems to fit a certain agenda and is leaving out many facts integral to understanding what happened. Am I missing something and if so what is it? Why have you yourself chosen to believe the article , when it quotes the doctor as saying "I believed" or "I trusted"... Terms like this are not truth they are simply supposition of his patients adherence. To me the argument quickly falls apart. What are your thoughts.
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