HIV of the mind

HIV is preventable, yet it’s still with us. Is it time for all, gay and straight, to stop framing sex as a lethal weapon?

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Photo by Antonio Zambardino / Contrasto / eyevine

Photo by Antonio Zambardino / Contrasto / eyevine

Jill Neimark is an award-winning science journalist and author, and a contributing editor and feature writer at Discover Magazine. She lives in the US state of Georgia.

My friend Dave died twice. He died the way we fall asleep and fall in love, lose our money or lose our way: slowly and then all at once. He died of HIV of the body. And he died of HIV of the mind.

A Jersey kid who loved trains and got a job as a subway conductor, Dave was infected with HIV at age 20 in the early 1980s, just a few months after he came out. His response was to simply slam the door shut on sex. He became celibate. Antiretroviral drugs saved him – but back then they were monotherapies to which his virus inevitably evolved resistance.

By age 40, Dave was living in a posh section of midtown Manhattan, where many HIV-positive individuals had been granted subsidised apartments. You could see the ghost of good looks in his face, and a goofy sweetness that made him almost universally likeable. Then he fell in love – although chaste love – with a twentysomething straight kid. To the kid, Dave was the patient father-figure he’d never had. To Dave, this was ardour long deferred. Within a year, their friendship had splintered apart, wrecked by its incompatible needs. There was a brutal argument. As his friend walked out the door, he tossed back an insult: ‘I hope you die of that damn HIV.’

Dave looked down as he repeated those words to me. ‘I would never kill myself. But if I die of HIV, it might be a relief.’ Not long after, Dave got a case of resistant thrush. His oesophagus was inflamed and it hurt to eat. The early HIV drugs that had saved him had led to resistance to similar drugs now available for triple therapy, and his viral counts soared. A new intravenous antifungal, caspofungin, was available. He tried it for one day and then walked out of the hospital. He went home. And within weeks he was dead.

Dave died of a virus but I think he also died of loss and shame. He died slowly from the slings and arrows of stigma, from searing grief, from the daily disconnect of viewing one’s most intimate act as a potential lethal weapon. He suffered all the conflicting emotions both the straight and gay worlds harboured about HIV. And then one day, he just died.

That was then, this is now. Things have changed, right? Apparently not. In spite of extraordinary research breakthroughs and new effective treatment and prevention, the HIV epidemic continues to chug along. There are 50,000 new HIV infections a year in the United States – a steady flow unchanged since 2007 (the peak was 130,000 a year in the mid-1980s). And the reasons are not so much medical as they are behavioural, psychological and cultural.

The US Centers for Disease Control and Prevention (CDC) recently announced that if HIV infections continue to rise at current rates, half of young gay men will have HIV by the age of 50. Infections have been increasing among young men who have sex with men, especially young, black men. Emory University in Atlanta, Georgia, reports that a black gay or bisexual man in Atlanta who becomes sexually active at age 18 now has a 60 per cent chance of becoming HIV-positive by the time he turns 30. Nationwide, condom use is steadily dropping and unprotected anal sex is increasing. New HIV infections have proved similarly resistant in Europe and Asia. There are still 6,300 new HIV infections a day worldwide.

The epidemic continues despite remarkable good news out of the 21st Conference on Retroviruses and Opportunistic Infections (CROI), held in Boston this year: TaSP, or Treatment-as-Prevention, works. A two-year study, called PARTNER, followed 800 couples, both gay and straight, where one was HIV positive and one was HIV negative. All admitted to inconsistent condom use. With a total of about 45,000 acts of penetrative sex, not one HIV-positive individual on the therapy transmitted the virus to a partner. PrEP, or Pre-Exposure Prophylaxis works. If you’re HIV negative and engaging in unprotected sex, one pill daily of the anti-HIV medication Truvada prevents transmission of the virus. Taken daily, it slashes risk of HIV transmission by at least 96 per cent. PEP, or Post-Exposure Prophylaxis, works. The therapy consists of two to three antiretroviral drugs taken for 28 days, within 72 hours of a possible exposure. In a case-control study of needlestick injuries to health-care workers, PEP decreased risk of HIV by 81 per cent.

Sounds simple, yet triumphing over HIV infection has unleashed decades of confused emotions and conflicts, making it surprisingly difficult to stamp out the disease.

Take the prophylactic treatment, PrEP. Even though PrEP has been approved in the US since 2012, fewer than 1,800 individuals are taking it. One gay man told me: ‘If we could time-travel back to the darkest plague days, everybody would be on PrEP. But in 2014? It’s just not happening.’

One reason is the worry that PrEP might replace condoms, ushering in a new era of unbridled bacchanalia and increasing other sexually transmitted infections. Back in the plague days, fear of AIDS infected us all, gay and straight, and shut down most of the establishments catering to gay sex far more effectively than police raids. Now, in a more relaxed era, when HIV infection is regarded as a treatable, chronic illness, risky behaviour is increasing – and in some quarters the backlash against risk is vitriolic.

That vitriol spews out of the great viral divide – the chasm between the HIV-positive and the HIV-negative that appeared with the infection itself. Some men have chosen to ‘sero-sort’, or partner only with men who have the same HIV status as themselves. Name-calling is intense. Men who advocate regular condom use are sometimes scoffed at as ‘condom Nazis’, while men who enjoy condomless sex are labelled ‘barebacking sluts’.

‘We are still living on a battleground, wondering who is responsible and who is a whore, who gave me HIV and didn’t tell me,’ says Mark King, the HIV-positive author who writes the popular, outspoken blog My Fabulous Disease. ‘To embrace treatment as prevention, we have to get past all that.’

Michael Weinstein, the head of the largest HIV/AIDS health care organisation in the US, the Los Angeles-based AIDS Healthcare Foundation (AHF), has joined the fray, calling Truvada a ‘party drug’. In protest, a movement has begun with the Twitter hashtag #removeWeinstein. But Weinstein, like other men of his generation, lived through the worst of the plague. They created AHF in the 1980s to care for people in the last, gruesome stages of AIDS – covered with lesions, dying of pneumonia, and wasted to mere skeletons. Even though HIV has shrunk from monster to mere illness, they still support condoms as mandatory gear.

The world has changed since then. Today, instead of police raids on gay establishments, we have legal gay marriage. In 17 states, a gay man can have the proverbial white picket fence of Andy Rooney’s America: he can walk down the street holding his husband’s hand.

Yet old stigmas are entrenched. If 17 US states have legalised gay marriage, 35 states and at least 66 nations have laws that criminalise exposing another person to HIV. In a stunning 2008 case, a man named Nick Rhoades was convicted of criminal transmission of HIV in Iowa after a one-night hookup, even though he was on medication that rendered his viral load undetectable, he used a condom, and his accuser did not contract HIV. He served 18 months in prison, and the label of criminal sex offender is on his police record for life.

Positive or negative? Marriage or jail? Which is your fate, and what does it mean? Today’s gay men are fed up with everlasting stigmas and understandably resent the burden of medical risk they must bear.

Technology has made that risk-taking easier than ever. Today, men seeking sex with men can arrange instant hookups through apps such as Grindr and Manhunt. They might identify themselves upfront as HIV positive or negative (Grindr has ‘tribes’, for instance, and one is ‘poz’) and on some apps, you can check PNP (for ‘party and play’, which indicates the use of increasingly popular recreational drugs such as crystal meth).

Some admit to simply wanting to get the virus so they can stop worrying and just have sex with other HIV-positive men. At the very extreme end of this is a behaviour called ‘bug-chasing’, where men seek out HIV-positive ‘gift-givers’ to infect them. Damon Jacobs, a 42-year-old licenced family and marriage counsellor in New York City, says that he went on PrEP when he found himself with exactly those thoughts. ‘A few years ago, after a break-up, I was getting back into the world of dating, and condoms were not as popular as they’d once been. I was seeing people with HIV living and thriving. I found myself thinking: if I don’t use condoms and I get HIV, well, maybe it won’t be the worst thing in the world. Those thoughts freaked me out. It wasn’t if I get HIV, it was when.’

‘Gay sex is the naughty sex. It’s the sex for which you don’t take your partner home to sleep under your parents’ roof’

Some see HIV-positive status as a coveted state. Since positive men on antiretroviral therapy are virtually unable to transmit the disease, some are choosing to partner only with such men. ‘Limit your condomless sex to poz guys with undetectable viral loads, and avoid condomless sex with casual negative partners,’ advises Marc André-LeBlanc, a Canadian HIV/AIDS activist, on a Canadian online HIV magazine called Positive Lite. Undetectable has become the new negative.

The stigma surrounding anal sex, perhaps more than anything, explains the rise of HIV of the mind. Studies have suggested that anal exposure to HIV poses 18 times more risk for the receptive partner than vaginal exposure. Yet, says Jacobs, ‘pleasurable anal sex is simply taboo in this society’. David Stuart, a substance use adviser at an HIV and sexual health clinic in London, puts it this way: ‘Gay sex is the naughty sex. It’s the sex for which you don’t take your partner home to sleep in your historical bedroom, under your parents’ roof.’

But if no one admits to the potent brew of feelings anal sex arouses, then medicine can’t do its job. The stigma around anal sex plays out in the doctor’s office, where acceptance and compassionate care are necessary to stem the epidemic. An anonymous college student told his story on a site called My PrEP Experience. After two boyfriends had cheated on him, and one had snuck a condom off during sex, the student wanted a pharmaceutical brand of protection. He wanted PrEP. ‘We don’t prescribe this to people like you,’ he was told by a physician. ‘I felt like she [the doctor] had already labelled me as whore and, as far as she was concerned, the appointment was over.’ Eventually, the prescription was written by the doctor’s boss and, after jumping through some administrative and insurance hoops for a few weeks, the student went to receive his pills. He was the first in his town of 130,000 to be given PrEP. It takes a confident young man to persist in spite of that kind of humiliation.

Todd Heywood, an HIV-positive activist who lectures on safer sex practices to gay men at universities around Michigan, told me it is very tough for young men to talk to doctors about condom ‘slip-ups’ or ask for an anal swab for sexually transmitted diseases (STDs), and such swabs are not FDA-approved anyway. One young man had to ask Heywood to advocate for him with a doctor at the county health department because they were refusing to swab for anal chlamydia and gonorrhoea. He had both.

And so, many men just avoid the matter of HIV and STDs entirely. Robert Grant, a senior investigator at Gladstone Institutes in San Francisco, was surprised when he first recruited young men for the groundbreaking study on Truvada. ‘One third had never had an HIV test. We had to test them, of course, and 10 per cent were already positive and didn’t know it. That conversation where you say: OK, take this test, and here are the things you can plan to do to stay HIV negative, that isn’t happening enough.’

When the conversation does happen, it’s beneficial. PrEP currently requires regular follow-up with your doctor – and that creates a structure in which all kinds of concerns can be discussed. During check-ups, individuals can get tested for other sexually transmitted infections. John Sewell, an HIV negative man on PrEP, told me: ‘The opportunity to talk to a doctor regularly, and to receive counselling about my decisions, is as valuable to me as PrEP, if not more so.’ His experience is backed up by the first PrEP trial, where just participating in a study and being counselled decreased risky behaviour.

As Rupert Whitaker, MD, a British psychiatrist and specialist in behavioural medicine, puts it, ‘Men today must think about far more than condoms. They must learn the meaning of undetectable viral loads, the potential risks and rewards of PrEP, the possibility of living a long life on HIV drugs.’ Stopping people from dying is not enough. PrEP is not enough. The actual behavioural drivers of illness and wellness must be openly discussed.

There aren’t many primary care doctors who feel confident opening up a conversation with a gay man about barebacking, online apps, anal chlamydia, and a treatment plan for protection. And how many gay men walk into their primary physician’s office comfortably prepared to discuss all those concerns?

And so, in 2014, in the developed world, HIV infections continue unabated at crushing expense to society because of HIV of the mind. I do not mean to imply the existence of a scarlet H unique to gay male psychology. No, I mean the incredible complexity around being gay in 2014 – when HIV is treatable and preventable, but profound vulnerability to infection remains. I refer to the whole welter of confusing feelings and polarised messages that gay men still shoulder, often invisibly, and that the straight world still struggles with, too. Silence equals death. That was the brilliant mantra coined by the original AIDS activists, the ones who mobilised all of us to action. But there is still a penumbra of silence around gay life, even in the most ‘out’ gay man’s heart.

Comments

  • cosmin
  • Matt

    Enjoyed this. Thanks for putting it out there. There has been such a lack of dialogue, and an overwhelming amount of name-calling, which gets us nowhere.

  • akanna

    Thank you for writing this piece. As an individual working in HIV prevention education, I can attest to the difficulties caused by HIV stigma. However, I would argue that the largest problem looming over HIV prevention efforts in America is the overwhelming apathy of the general population. I have seen this especially in young people who have not received comprehensive sexual health education -- to them, HIV is not perceived as a problem in modern America. If we hope to see HIV disappear, it is important that we pass our (perhaps painfully earned) knowledge on to younger generations. Here's to zero : http://www.unaids.org/en/aboutunaids/unaidsstrategygoalsby2015/

    • Rob McGee

      " I can attest to the difficulties caused by HIV stigma. However, I would
      argue that the largest problem looming over HIV prevention efforts in
      America is the overwhelming apathy of the general population"

      I would suggest, akanna, that one of the causes of this overwhelming apathy is that "stigmatizing HIV" (bad!) has sometimes become confused with "stigmatizing the behaviors that easily spread HIV" (good!). It's appallingly insensitive to treat HIV+ people like Biblical lepers, but there's nothing at all wrong with saying "if you engage in bareback bottoming outside of a totally monogamous relationship, you are a de facto bugchaser, and you're also stupider than a hamster."

    • Rob McGee

      I would further suggest that one of the reasons that the (proper) stigmatizing of high-risk behaviors has become conflated with the (improper) stigmatizing of HIV+ people is that some out-and-proud gay men subconsciously despise their own homosexuality so much that they're willing to romanticize and fetishize the ONE specific activity (bareback anal bottoming) that magically transformed thousands and thousands of gay men into fabric panels in a huge quilt that covered more than half of the National Mall in DC.

      What could be more perverted and homophobic than encouraging today's young gay men to imitate the behavior that led to the gruesome premature deaths of yesterday's young gay men?

  • IndigoBoy0

    Thanks for this!!! It has been a long time since i've read a piece that gets it.

  • http://www.products-from-china.com/ Huang Susan

    Enjoyed this. Thanks for putting it out there.

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  • Tony

    Thanks. When are we gonna catch up with the US in spreading the word on these new preventative measures?

  • Tony

    I'm tired of the fear around sex and the ignorance surrounding this type of prevention treatment. Truvada should be made available to all young gay men who don't use condoms for whatever reason. We have a means to save lives, we should be shouting this from the rooftops. These kids didn't see people die the degrading, painful, horrific deaths of the plague days. We have to educate them that although getting HIV might not be a death sentence anymore - it still fucks your life. There are always going to be people who don't use condoms - now at least there is something that can prevent the spread of HIV- why the fuck don't people know about it.?

    • Rob McGee

      "Truvada should be made available to all young gay men who don't use condoms for whatever reason."

      Seriously? The wholesale cost of Truvada is approximately $1000 per month. If we assume for the sake of argument that a typical young gay man has anal sex 15 times per month, this means that the cost of protecting yourself with Truvada is about $67 per f**k, versus something like $1.50 per f**k for a condom and a generous blob of condom-safe lubricant.

      Of course, Truvada advocates will argue that the cost of the drug is covered by insurance or Obamacare, but this doesn't mean that Truvada is "free" -- it just means that nearly all of the $67-per-f**k cost is being passed on to other insurance customers and taxpayers, including gay men who always use condoms for anal sex, and gay men who don't have anal sex at all, and monogamous married heterosexuals who aren't really at risk for HIV, and so on.

      I might add that if the cost of using condoms is under $2 per sex act, the cost of doing frottage is something like 15 cents' worth of baby oil or KY jelly or Albolene, for those who prefer to do it with lube.

      • Jill Neimark

        Cost concerns me, too--although in the course of my research, I found that Truvada will likely go generic by 2021 (when, I think, Gilead comes out with a "safer" variant that is gentler on the kidneys, supposedly? I'm not sure about this.) It seems embedded in the general pharmaceutical madness--$80,000 for curing hepc, etc. That's a whole other issue: health as a for-profit business.

        • Rob McGee

          I agree that Truvada seems very overpriced, considering that it's merely a reformulation of existing antiretroviral drugs, rather than a completely new drug -- so the only R&D cost for Gilead was in testing Truvada, not in inventing it.

          Again, though, doing frot or oral costs nothing at all, and condoms are super-cheap. But a lot of gay HIV activists would rather spend their time advocating for subsidized Truvada -- because throwing other people's money at the problem helps to create job security for lobbyists, while telling gay men "sheesh, Mary, how freakin' difficult is it to either abstain from anal sex or to Use a Condom Every Time™ you have anal sex?" isn't nearly so lucrative.

          So, while there are valid reasons to be suspicious of Big Pharma greed, there are also valid reasons to be suspicious of Gay Activist greed.

          • Jill Neimark

            It's too bad I can't get Mark King to weigh in here. Mark where are you? :-). I do hear you, Rob. I think all your points should be considered.

            When I researched this, though, I began to contemplate sex without a condom. The reality is that in straight relationships (which is what I know), even if using a condom to prevent pregnancy, from time to time in a relatioship, a woman may not.. (I personally think, for women, condoms are the best birth control--the pill has medical downsides and side effects; spermicidal jellies kill of the good flora that protect you from infections; diaphragms can cause cystitis by pushing up against the bladder). I could speculate on the many reasons why--but I wager that when it happens at a time a woman doesn't want to get pregnant, it's probably a desire to be completely unfettered by any paraphernalia of any kind. I would assume it's similar with MSM, although the situation is different because the risk of HIV is so much higher. However, given that it's happening, what to do? One answer seems to be what I suggested in my piece--good behavioral medicine, where doctors can open a discussion, and men feel free to discuss their hopes, fears, needs, and concerns. Where they can be guided to make better decisions. Of course, this is a broader problem in medicine (I once had the privilege of watching an aneurysm being clipped, and saw the big glob of fat in the curve of the blood vessel in the lady's brain. She was in her 60's and hispanic. I asked the doctor, do you counsel her about diet? He shrugged, 'That's not my job.' And how may folks on statins, or Type 2 diabetics, are given regular counseling by certified nutritionists referred to by their PC's and covered by insurance--to help change the cause of the problem in the first place? Medicine is in many ways failing us.) But if there were some kind of remuneration put in place for this kind of "counseling" (a "longer" first patient visit?), and if doctors regularly called back their MSM patients for their quarterly STD testing, the situation might improve. Doctors these days see their practices as a business anyway, and follow up with other patients to be sure they come in; why not MSM for regular STD testing, and appropriate preventive measures?

          • Mark S. King

            "HIV activists" have been advocating everything from condoms to monogamy to candlelit prayer for the last 30 years, Rob. Your belief in the epidemic-stopping power of frottage, upon which you seem strangely fixated, is duly noted.

            Curbing infection rates is going to take every tool we have, behavioral and otherwise. Your insistence, again, that people who are not using condoms and choose to engages in (gasp!) anal sex are simply being stubborn shows a real lack of understanding about sexual behaviors.

            How difficult is it to abstain from anal sex? You say that with the ferocity of a man who either doesn't care for it, or finds it a shameful act, or otherwise believes intercourse between men is a mere act that can be discarded for life.There isn't enough space here to "unpack" that fascinating point of view.

          • Rob McGee

            Your insistence, again, that people who are not using condoms and choose to engages in (gasp!) anal sex are simply being stubborn

            I would never insist that anal barebackers are being "stubborn"; I'd insist that they're acting like irresponsible retards who can't learn from the lessons of late-20th-century gay history, and who believe that every problem can be solved by throwing other people's money at it.

            Your belief in the epidemic-stopping power of frottage, upon which you seem strangely fixated

            Mark, if you'd turn your keenly observant eyes up to the original post's headline, you'd see that this thread is about HIV in the Men-Who-Have-Sex-With-Men demographic -- where, practically always, HIV has been spread by anal sex, and has never been spread by frot.

    • Rob McGee

      Also, let's unpack Tony's statement about "young gay men who don't use condoms for whatever reason." What exactly ARE the reasons that some gay men don't use condoms? It's certainly not because condoms are expensive or hard to find -- you can buy them absolutely everywhere and the average retail cost is something close to $1.50 per rubber, or even less. Furthermore, there are many places where condoms are given out for free, and in a pinch, they're not hard to difficult to shoplift. And, of course, if it's 3 a.m. and there are no stores open where you can buy condoms, it costs NOTHING to defer anal sex until the next date, and instead rely on frottage or "RU-N2-69" as highly effective risk-reduction strategies.

      One of the main reasons that young gay men don't use condoms -- as I think Tony knows perfectly well -- is that barebacking has become increasingly ubiquitous in gay porn, and also because gay "safer-sex educators" go around saying things like "of course, we all know that nothing beats the sensation of sex without a condom, but you've still got to use a rubber (unless you totally trust your partner or you've both done an instant-result oral-swab HIV test or you're taking Truvada)."

      Which is to say, in short, that gay male culture vigorously and constantly promotes barebacking even while giving lip service to "safer sex." In fact, even before the appearance of the highly effective antiretroviral "cocktail," some gay porn studios routinely portrayed "simulated barebacking" by using careful editing to make it look as though the Top wasn't wearing a condom, even though the actor actually had a rubber on if you looked more closely.

      • Jill Neimark

        Thanks, Rob. I was hoping many viewpoints would be expressed in the comments--all perspectives bring something.

      • Mark S. King

        Yeah, let's blame all this on people saying how good it feels to have sex without a latex barrier between you and your partner. Because keeping the truth from young horny gay men is a great plan. They'll never find out if we don't tell them.

        Since the freakin' beginning of time, mankind has been having sex without condoms. We have done so despite the peril of consequences, which have been many (ask anyone having an affair). To expect this to change in the course of 25 years is ludicrous, and blaming those who want the most pleasurable sex possible only destroys our credibility as prevention people.

        I'm so glad people use condoms. I wish more of us did. But the fact people do not is not some moral failing or act of suicide. If we don't approach our prevention strategies from that angle -- "we know unprotected sex is fabulous but let's explore other options or explain why it is risky" -- we have no hope of crafting messages to young people that they will believe and act upon.

        People get diseases. They get pregnant. They are unfaithful and slutty and in love and get drunk and trust other people and say yes when they should say no. To attribute all of this behavior to a porn outfit that gives their audience what they want? Human behavior is far more complex than that.

        But please, continue railing against irresponsible behavior and bareback porn. That plays well in the heartland and in the South. Where STD and pregnancy rates are soaring.

        • Jill Neimark

          Eloquent. Thanks.

        • zgary

          I suppose getting drunk and getting driving is not an "act of suicide", but it sure is stupid. Life is unfair. You just cant just go out and fuck anytime ( or drive buzzed) you please or with anyone you want. Right now that is a fact. And I have a feeling if AIDS was cured tomorrow another biological pathogen would pop up sooner or later.

  • nullcodes

    The problem is that none of the AIDS activists bother to advocate for funding for the science and finding a cure -- they are all focused on behavioral and social change. You can raise all the awareness you like, people aren't going to change their behavior. The ONLY way to tackle this is by curing it. I mean, we have numerous approaches to cure it but the funds are not available for human trials. I mean the RhCMV/SIV vector-mediated vaccine is a good example of the NIH refusing to fund promising research to the human trials phase. Are AIDS activists even aware of this?

    • Jill Neimark

      Hi nullcodes. I'm not intimate enough with all the research and science right now than to hazard more than an opinion. It seems to me the virus is very hard to "cure"--but that injectables and microbicides may be a really good answer soon coming down the pike. I did write about the cure in 2011, and compared to many other medical conditions, the amount of money and energy going into research for a cure seemed phenomenal to me. But as I said, this is not my beat, so I am only hazarding a guess:

      http://discovermagazine.com/2011/oct/11-the-end-of-aids

    • Mark S. King

      A cure can take many forms, including a complete obliteration of the virus, a functional cure, or a regression of viral activity. Some of these would require ongoing treatment while other do not. Meanwhile, new prevention tools like PrEP don't require behavioral change. And I can assure you that there are many fine HIV activists (the word AIDS itself is fading in usage) who are working hard to address cure research from a variety of angles. Check out Nathalia Holt's new book, "CURED."

  • KC

    Beautiful opening paragraph but it sounds like a line from John Green's book, The Fault in our Stars, "...I fell in love the way you fall asleep: slowly and then all at once."

    • Jill Neimark

      It's an oft used trope. Comes from Hemingway originally:

      “How did you go bankrupt?” Bill asked.

      “Two ways,” Mike said. “Gradually and then suddenly.”

      The dialogue above is from Ernest Hemingway’s 1926 novel, The Sun Also Rises.

      It has been quoted and misquoted as slowly and all at once, all over the place and in many iterations and imitations and allusions and variations since.

      • KC

        Interesting, well that would explain why a young adult book and an HIV article share similar lines.

        • Jill Neimark

          It *is* interesting what sort of enters the collective unconscious. If I google search gradually then suddenly, I see Seth Godin saying that's how companies die, and Prozac Nation, a bestseller, saying that's how depression strikes. I'm sure there are many other examples. I don't know which I like better, gradually then suddenly, or slowly and all at once. Probably Hemingway was the better writer. But it seemed so apropos here--living with something that takes a spiritual and physical toll over many years, then finally and switfly strikes you down.

          • KC

            I probably am falling under the spell of existential psychologists who argue that there is no true sense of "self"... I am ambivalent at least :)

      • KC

        And I do love the opening paragraph, it does beautifully capture the enormity and powerlessness inherent in those experiences. (The book is heartwrenching and beautilul too).

  • Candice

    The first paragraph is plagiarized from John Green: https://www.goodreads.com/quotes/485442-as-he-read-i-fell-in-love-the-way-you

    • Jill Neimark

      Hi Candice, see my conversation with KC from a few hours ago. Thanks.

  • theszak

    The Strategy. BEFORE sex get tested TOGETHER for A VARIETY of STDs then make an INFORMED decision. google "tested together"

    • Jill Neimark

      Hi theszak, testing together can work if you truly trust your partner to be monogamous, and/or discuss any straying with you after it happens (and practice safe sex when having extracurricular sex). The Partner study, and anecdotal experience, shows, however, that this isn't necessarily the case. Those who did get HIV in the Partner study had a strain different than that in their committed relationship, indicating they got it outside the relationship. Since in early and asymptomatic HIV infection the viral titers are often highest, and likeliest to be transmissible, the above strategy could be risky, especially for a partner who is sometimes or always in the receptive position. Regular testing does work for truly committed and honest partnerships, but in the real world this doesn't always pan out.

      • theszak

        > testing together can work if you truly trust your partner to be monogamous, and/or discuss any straying with you after it happens (and practice safe

        The correct term is always... SAFER. There's never zero risk.

        > sex when having extracurricular sex). The Partner study

        http://www.chip.dk/PARTNER

        > , and anecdotal experience, shows, however, that this isn't necessarily the case. Those who did get HIV in the Partner study had a strain different than that in their committed relationship, indicating they got it outside the relationship. Since in early and asymptomatic HIV infection the viral titers are often highest, and likeliest to be transmissible, the above strategy could be risky, especially for a partner who is sometimes or always in the receptive position. Regular testing does work for truly committed and honest partnerships, but in the real world this doesn't always pan out.

        Compare that with The Strategy BEFORE having sex get tested TOGETHER for A VARIETY of SEXUALLY TRANSMITTED DISEASES then make an INFORMED decision. google "tested together"

        • Jill Neimark

          Yes, thanks for that correction--I'm pretty sure CDC recently adopted "safer sex" as a term. I agree testing together is a great idea in a truly trusting partnership (either monogamous, or if fluid, always being open and discussing outside encounters and what protection was used)--but I don't know how reliably common those are.

          • theszak

            Emphasize BEFORE. BEFORE sex getting tested together isn't the same as getting tested together. The Strategy of BEFORE having sex get tested TOGETHER for A VARIETY of STDs will work for any potential sex partners. Prevent new infections. BEFORE sex get tested TOGETHER then make an INFORMED decision. google... tested together before.

  • Rob McGee

    Jill: Do a bit of Googling for the name "Bill Weintraub," or go to wikipedia and look up "frot" -- a term that Weintraub coined in the late 1990s by shortening "frottage," and meaning "male/male frottage, with a particular emphasis on direct penis-to-penis contact."

    The odds of being infected by HIV during "frot" are roughly similar to the odds of having your skull cracked open by a chunk of blue ice from a passing 747. Which is to say that aggressively promoting frot and mutual masturbation as the "default" modes of man-to-man sex OUGHT to be a central pillar of HIV-prevention among MSMs.

    Yet non-penetrative sex remains an afterthought and footnote in safer-sex education, and hardly any gay men have heard of Bill Weintraub even though 99% of gay men have heard of Margaret Cho. Partly this is because Weintraub -- who's in his 60s and was an openly gay activist BEFORE Stonewall -- is often harshly critical of gay-male culture, while Margaret Cho is a no-talent suck-up who built a career on telling gay men how super awesome they are.

    I would add that many gay men would consider it blasphemy to suggest that anal sex is a bit kinky and S&M-ish; the received wisdom is that anal sex is totally "vanilla" and that as long as you use a condom -- or even if you DON'T use a condom -- having anal sex on the first date is no more a big deal than doing "heavy petting" on the first date.

    THIS is one of the "cultural issues" behind the 30,000 or so new cases of HIV every year among men who have sex with men -- but it's not an issue that gets much coverage in gay media.

    • Jill Neimark

      Thanks, Rob. I did run across frot during my research. It was an interesting website.

    • Mark S. King

      You mention frottage as if no one has ever heard of it. That fact is, frottage is what every man does, gay or straight, before discovering HE CAN HAVE ACTUAL SEX. Your reduction of sexual behavior to "if they only knew they could just jack each other off, they would leave it at that" shows a complete lack of understanding about sexuality itself.

      How Margaret Cho showed up in this string I'll never know.

  • theszak

    A thought experiment… Imagine a disease of the future, an organism both parasitic and canabalistic centered around the genitals. If you don’t have sex you die. So A calls B, “Come on over!” B says, “I can’t. I’m going over to C’s.” A cries, “You’ve got to come over now. It’s beginning to gnaw at me!”

  • danmeek

    This is beautifully written and I'd say pretty confidently that Jill Neimark mostly gets it. But as a prevention practitioner and now researcher with a long-standing interest in how the media depict prevention issues and strategy, at the point where you mention bug-chasing, you instantly lose all credibility in my eyes. Only a tiny handful of people have ever intentionally sought out HIV infection. Media coverage of bug-chasing has been 99% hearsay and 1% stories from the same handful of individuals. Journalists have failed to ask the commonsense question, which is 'can I see any reason why someone might, after they test positive, seek to maximise their sense of personal agency by deciding they must, really, have intended to get infected?' In this article, Neimark conflates Damon L. Jacobs' remark about a sense of inevitability -- which was factually accurate if he continued in his pattern of behaviour, even though he didn't in any sense want to get infected -- with bugchasing. Jill and other journalists, every time you do this, every reader who doesn't already 'get it' decides that gay men are perverse, irrational, driven by the death drive -- all the stereotypes that make it so hard to win public and policy support for evidence based community prevention.

    • Jill Neimark

      Thanks for your thoughts. I do see a continuum from "Maybe it wouldn't be so bad" to "I wish I could get it" to the extreme of bug-chasing. I read some very intimate stories in my research of what happens when one partner in a fluid commitment turns up HIV positive. One man described the terror his partner felt over potentially infecting him, and the negative impact condoms and fear had on their sex lives. He described his fear his partner would leave him for an HIV positive man and his wish he could get the virus too so they could go back to their great sex life. He eventually went on PrEP to solve it. The great viral divide appears to be real and the anxiety over avoiding HIV and the fact drugs great it effectively (though not without side effects and it seems from what I read that lifespan with HIV may be about ten years shorter in some) all contribute to what I spoke of in that paragraph. As you may have noticed at the end of the essay I make clear I'm not implying a scarier H unique to gay male society. But in any case thanks for your perspective.

      • Jill Neimark

        Also, for those more interested in this issue, there is the widely praised but controversial film, The Gift, by gay filmmaker Louise Hogarth:

        "One of the most disturbing issues raised in the film is why young gay men would want to deliberately infect themselves with HIV. The men featured in the movie explain that they do so, in part, to fit in with their friends, many of whom are HIV-positive, because they believe that by becoming “poz,” they won’t have to worry about getting the virus, and because the development of anti-AIDS drug “cocktails” means the disease is no longer a death warrant. Hogarth points to healthy-looking former Laker star Earvin “Magic” Johnson, who announced he was HIV-positive in 1991, and says he is the image the younger generation sees of an HIV-positive man. “I think we absolutely have to get the message out that this is not some manageable thing, that you take a pill and everything is OK,” she said. Actor and gay activist Harvey Fierstein, star of the Tony Award-winning Broadway musical “Hairspray,” has rallied support for Hogarth’s documentary, calling it “a film of great social importance.” - See more at: http://www.aidshealth.org/archives/news/when-the-gift-is-hiv#sthash.1PP25oO2.dpuf

        • jamshid

          That timesfreepress.com article is shoddy science journalism.

          "Bug chasing, on the other hand, while still rare -- no one knows the exact extent of the phenomenon -- has become more common".

          I've emailed Sorrell and Alcendor asking for clarification.

          I'll check out the documentary, but anecdotes aren't science.

          This is like mentioning the "knockout game" in a serious discussion about teen violence. I'm not saying it's never happened, but talking about it like a phenomena is silly.

          Andrew Sullivan said it best over a decade ago:

          http://www.salon.com/2003/01/24/rolling/
          But the first thing a journalist has to do is find out if the phenomenon exists to any real extent, how significant it is, and how widespread it is — especially when it deploys the most sensational language to describe an already beleaguered and feared subculture. That’s why this piece isn’t journalism.

          • Jill Neimark

            My piece is actually a reported essay, a particular genre within journalism, and thus though it is studded with facts, it is essentially my take/perspective. It's my essay. I suggested on twitter, where you contacted me, that you contact Vic Sorrel, community editor at the Vanderbilt Vaccine Program, who was quoted in the article I cited, because you are so upset over the citing of bug-chasing. Good luck.

  • Seran Gee

    One of the issues I have with these pro Truvada/PrEP articles is that they do not talk about the epidemiological risks of using this drug. Treatments for many illnesses, not just HIV, have low compliance rates. Every person who does not take the preventative pill (not even a treatment, just something to prevent the disease) regularly poses a risk of mutating the virus should they become infected, which would not be prevented due to irregular use of prep. Remember: prep is an anti retroviral. If, like antibiotics to their respective illnesses, prep results in resistant strains of HIV, it could result in an untreatable and therefore more infectious and harmful (treatments lower transmission rates) strain of HIV.

    Another issue I have with these articles is that they propose that opposition to prep is due to slut shaming when many concerned activists are really just worried about the risk. While Truvada is very effective against most strains of HIV it will not protect against certain, very infectious, mutated strains, which a condom would.

    So why not use both prep and condoms? Well, if you're already planning to use condoms, the risk of infection is already very low. While condoms can break, they do not pose epidemiological risks to our entire community. Really, the best form of prevention, as this article nods to, is testing promotion, ending stigma, and improving access to drug therapies for treatment. Why advertise for these expensive, unnecessary and possibly dangerous pharmaceuticals when people don't even have access to the basic healthcare they need? antiretroviral treatments. These, as shown by the partner study, are sufficient to prevent transmission. If we could just make sure everyone had access to these drugs and there was no stigma to prevent them from getting tested or using the drugs, then we would not only see reduced transmission, but also healthier and happier people living with HIV.

    So in closing, I am against the *widespread * use of Truvada. While I believe that in certain cases, such as for people working in high risk environments or people who cannot/will not use condoms, Truvada is an effective prevention option, I do not support its widespread use because of the epidemiological risks that the drug poses when used widely (especially when we consider how low compliance is).

  • theszak

    A thought experiment...
    During the upcoming Walk for AIDS is it possible that one person will meet another who has HIV infection, whether they know it or not, and have sex? Is it possible that infection could be passed along to an uninfected person? Considering statistical information on the spread of HIV, could it happen at least one person after meeting another person during the AIDS walk will get infected? Two people? Three people Four people? More? How much money is raised by the Walk for AIDS? How much does it cost for a person's treatment from when HIV infection is detected until death?

    Is it possible that the AIDS Walk will result in enough new cases of HIV and AIDS to consume all the funds generated by the event?

  • Erik de Jong

    Thank you for this article…

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