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November 21st, 2013

Stop Bludgeoning Young Gay Men with Our AIDS Tragedy

Lesley was my closest friend to become sick in the 1980’s, and he fought bravely until his death from AIDS. Today, there are little rituals I have to honor his memory, and I often write about him, the first of many friends lost to the epidemic.

taregdy face grab 4 CROP BLOG SIZEBut there’s something I will not do. I will not dig up Lesley’s body and beat young gay men with his corpse. Lesley didn’t perish so I could use him as a scare tactic. He wasn’t a cautionary tale. He wasn’t a martyr. He was a man with the same passions and faults as anyone else, and I won’t use his death as a blunt instrument.

Plenty of us are more than happy to rob graves, however, in an attempt to frighten gay men into acceptable behaviors. This kind of horror-by-proxy happens all the time. Concerned but misguided gay men of a certain age hear whatever the latest HIV infection rates are, and they pull the AIDS Crisis Card.

“If their friends all died like mine did, maybe they would think twice before having sex without a condom,” goes a typical remark, drenched in self pity and tenuous logic.

This statement misrepresents our lost friends and oversimplifies the state of HIV today. It projects our grief in the direction of those who bear no responsibility or resemblance to what we experienced. It subtly blames our departed friends for their mistakes, and then tries to equate them with a new generation of gay men who are much too smart to buy into it.

So frozen in time is our victimhood, it hardly allows for the facts of the here and now. Young gay men are more aware of HIV than my generation ever was. They simply relate to it differently, having come of age since the advent of successful treatments. Asking them to fear something they have literally grown to accept is as realistic as asking them to perform “duck and cover” drills in case Russia drops the bomb.

To view these young men and say, in effect, “if only you saw all the death that I saw…” is a wishful fantasy that disturbs me on all sorts of levels, and it says far more about us than it does about them.

I understand these attitudes come from a place of complicated emotions, ranging from grief, primarily, to our own shame or guilt over dodging a bullet — and it may come from a sincere need to share our experience with others. The punishing tone that often accompanies it, though, isn’t going to win the respect or investment of younger men. It makes us as relevant as old men on the front lawn waving a rake at youngsters.

I take our community history very seriously. I’ve written a book about the dawn of AIDS in Hollywood, have read And the Band Played On more than once, cheered on the activists in the documentary How to Survive a Plague, and can’t wait for the release of Sean Strub’s upcoming AIDS memoir, Body Counts. There is enormous value in preserving our history — and in recognizing that many of us still carry trauma born of that time.

Community advocates have stepped up work to help us process what we went through a generation ago. Post Traumatic Stress Disorder (PTSD) is a very real phenomenon for longtime survivors, and excellent community forums have been mounted to explore these areas by the Medius Working Group in New York City and the “Let’s Kick (ASS) AIDS Survivor Syndrome” project in San Francisco. Hopefully, other cities and LGBT organizations will follow suit.

That important work is quite different, however, from allowing our past to blind us to the present. When we raise our finger and say in a voice filled with foreboding, “people think you only have to take a few pills and that’s it,” we are denying the actual experience of a lot of people with HIV. For many like me, taking a few pills a day is, in fact, the only impact HIV has on my life. Research suggests I will live a normal lifespan and am more likely to die from cigarettes than HIV. And I’m not going to deny all that in order to advance a fright-show storyline that isn’t my experience.

There are young voices telling new stories, thankfully. Gay writers living with HIV such as Patrick Ingram, Josh Robbins, Tyler Curry, Aaron Laxton, Robert Breining and the irascible Josh Kruger are peering across the generational divide (I have HIV antibodies older than they are) and they seem bemused. Their blogs suggest a post-AIDS life of full engagement and purpose. I consider this progress. If their lives (and writings) don’t include burying friends or serious health concerns, wasn’t that our goal all along?

Nowhere has our AIDS tragedy mindset done more damage than in the rollout of the unfairly maligned Pre-Exposure Prophylaxis (PrEP), the prevention breakthrough that allows HIV negative people to take anti-HIV medication to avoid infection. It is largely viewed as an alternative to condoms, which has quickly labeled HIV negative men taking PrEP as “barebacking sluts” by people coming unhinged at the very idea of unprotected sex. (Note: I remember when gay sex never involved condoms. It was glorious. I always thought getting back to a place where we had a real choice in the matter was kind of the point.)

There is something about the simplicity of PrEP (a pill a day! no condom negotiation! no guilt or judgment!) that is driving older gay men up the wall, considering their resistance to it and spurious claims of inefficacy, cost, and side effects. Tellingly, younger gay men have voiced fewer objections.

The facts are these: PrEP is at least as effective as condoms when used properly. The drug currently used for PrEP, Truvada, is well tolerated with few side effects. And despite fears and misinformation, it is being covered by insurance providers (do you know of even one claimant that has been denied?). For those without insurance, Gilead, the maker of Truvada, has a generous patient assistance program that allows you to earn a sizeable income and still get the medication.

Perhaps, in the end, we are simply victims of our own success as advocates. We successfully entrenched the immediate, mortal danger of HIV, the shameless inaction of our government, and the profit-driven, opportunistic role of the pharmaceutical industry. Anything that veers from that narrative, especially for those of us who lived it, feels like betrayal. Yet here we sit, in an age that confounds so much of what we once knew to be true.

The 1980’s are history. They are not a prevention strategy. The war as we once knew it to be, the one Lesley and so many others fought so valiantly, is over.

May they rest in peace.

Mark

————————————————————————-

PLUS…

ericrofes markichestDOTcomMy friend and early mentor, Eric Rofes, was an out, gay, kinky, deep thinking anthropologist that wrote the important book Reviving the Tribe, about building community among gay men during the AIDS epidemic, and Dry Bones Breathe, his follow-up work. He was one of the first to write about the value and even spiritual importance of anal sex for gay men and even exchanging bodily fluids (when he said as much at a forum for gay men in Atlanta I organized in 1995, it was as if a bomb went off, such was the hysteria). For a thoughtful overview of Eric’s work and influence, check out a piece from Charles Stephens about the Rofes legacy — and where his worked wasn’t fully realized. Whenever I fear my writing might seem provocative, I think of Eric Rofes, his bravery, and his lasting influence on the work of many of our leaders. Eric died far too early in 2006 of a heart attack. (Photo credit: Markichester.com)

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38 Responses to “Stop Bludgeoning Young Gay Men with Our AIDS Tragedy”

  1. Sean Strub Says:

    November 21st, 2013 at 4:25 pm

    Great column, Mark, and I especially like the Duck and Cover analogy (as well as the nice plug for Body Counts!) I agree that it is important for gay men who can’t or won’t use condoms to have access to Prep. For those who prefer the “belt and suspenders” approach and want to use Prep in addition to condoms, bully for them.

    The science is clear that if used consistently and properly, Prep protects one from acquisition of HIV. But the science is also clear about something else, that doesn’t get as much attention as the exciting and liberating promise many see in Prep. That is the side effects, both known and unknown, to use a Rumsfeldism. It is important that those contemplating Prep, especially young people who haven’t witnessed first-hand overmedication with anti-retroviral treatments, are fully informed and educated about the side effects before making a decision about Prep.

    While most people I know who take Truvada tolerate it well, toleration isn’t the same thing as an absence of side effects. Anyone interested can google “truvada side effects” and get a library of information on the topic, or go to the POZ forums and learn directly from those who have taken it, but two especially serious ones are:

    1. Lactic acidosis, a serious, sometimes fatal, medical emergency. Symptoms include weakness, unusual muscle pain, trouble breathing, nausea, vomiting, a fast or irregular heartbeat, and/or feeling cold, dizzy or lightheaded

    2. Serious liver problems with liver enlargement and fat in the liver. Symptoms include jaundice, dark colored urine, light colored stools, lack of appetite, nausea, and/or pain in your lower stomach area.

    And the longer one takes Truvada, the greater the chance of experiencing these side effects, so it isn’t a matter of just taking the drug and tolerating it ok and thinking one is in the clear and won’t have problems. Who knows what it means to take it for 10, 15, 20 years or longer?

    I have profound osteoporosis (and several plates and more than a dozen pins and screws as a result) that I believe was induced or exacerbated by one of the components of Truvada. That drug isn’t the only cause of bone demineralization, of course, but it is a serious one that accrues over time.

    No one should take Prep without being aware of the risks and making their own risk/reward analysis. I fear that in the excitement and promotion and, yes, hype, over Truvada, the seriousness of these intense chemotherapeutic treatments sometimes get lost.

    I wish “treatment advocacy” was as much about educating people about the treatments as it is about trying to get people to take them.

  2. PrEP Advocate Says:

    November 21st, 2013 at 4:40 pm

    Great article! Thank you for supporting PrEP.

    I wish your article examined PrEP’s relation to condoms. The academic studies that show PrEP’s effectiveness made guided counseling mandatory and combined PrEP with condom usage/traditional HIV prevention methods.

    For example, the iPrex study insisted that all study participants use condoms and maintain existing HIV prevention methods. An interesting point to consider is that taking the pill served as a reminder and catalyst to effectively use condoms.

    Right now, it might be too soon to promise that PrEP means no more condom negotiation. While the thought is exciting (in all sense of the word), the studies support PrEP as a tool to add, not to replace.

    If anything, opening access to PrEP and advocating its usage may put condom-only strategies finally to rest and allow for a more comprehensive and people-centered approach.

  3. Josh Robbins | I'm Still Josh Says:

    November 21st, 2013 at 4:50 pm

    Mark,
    I am so inspired by your candor, your voice and the resonance of your message. This piece particularly is one that (besides being mentioned– and HEY! Thanks for that! *Wink Wink*) I have been contemplating how to best put to words– but now you’ve done it. So, thank you. There is one thing however, that I do feel that many of us who didn’t experience the nightmare that I can only watch in films like: Still Around, Sex in an Epidemic, and those that you mentioned, don’t do enough– give honest and deserving gratitude to those that have not been as fortunate as us, thanking the long term survivors and understanding that sometimes the stories being told about those moments in this virus’ timeline can bring more comfort and resolution, affirming our sensed call-to-action for something, sometimes we yet to understand. So, as small and out of place temporarily this may feel– thank you, Mark, for where you’ve been, what you’ve experienced, the stories you tell, the wisdom we all take from your sharing, and for the commitment that you’ve made to continue to inspire so many of us– those look up to activists and humans, like you. :)
    Xo!
    -Josh

  4. Jeton Ademaj Says:

    November 21st, 2013 at 4:52 pm

    great essay, Mark. i expect some of the people guilty of this behavior will not be amenable to seeing it as you describe. i’m curious to hear their perspectives and/or rationalizations.

  5. Butch McKay Says:

    November 21st, 2013 at 5:12 pm

    Thanks Mark for your honest discussion of the situation. Thank you for leading the discussion at North Florida ManREACH over the weekend that included this topic. I have been saying the same thing for a long while, but in less powerful terms After 25 years of losing hundreds of friends, I honor them still by listening to the new generation and letting them know I am there for support. I am so thankful they have not had to experience all the loss I have suffered, I wish to GOD I have never had to go through what I have been through. Let’s celebrate the fact that death is not happening at an alarming rate any more. My friends who have passed would lead this celebration. It is a new day and our community is up to the challenge. If you can’t be supportive step aside. We need to listen more and preach less. It took me a awhile to adopt this approach but now that I have, I am learning and finding new avenues to be supportive. Keep your messages coming, Mark.

  6. Simon Thwaites Says:

    November 21st, 2013 at 6:15 pm

    Hi Mark a good article which pulls a bit on my heart strings. I was musing about your line “To view these young men and say, in effect, “if only you saw all the death that I saw…” brought up a few emotions as I’m one of those guys who tells the stories and recounts the past for the present to hear. I found an echo in those words similar to what veterans say during Remembrance day when regaling their stories of war or a personal battle they were in. I hear a soft echo in between the lines of the Jewish people arguing today that there was indeed a holocaust. We did live through a terrible time, were our friends and family were devastated. We had no medications and then AZT with it’s story. No one should hide or diminish the truth. I have seen over time memories forgotten and washed under the carpet because it is not politically correct now to talk about how bad it was, yes the horror stories. In a time were governments become complacent and the general public believes the war against AIDS is over because we have the wonderful pop a one a day pill someone needs to bang a few heads together to get anything done. So you need both the horror stories and the amazing wonderful shining moments when one spirit shines as they combated AIDS and yes still died because we DON’T have a cure yet. I agree education prevention is a totally different from years gone by because there have been changes and victories, won by some very special people who aren’t with us today and it’s okay to say why they aren’t that to is part of that education. Maybe when one feels there love one is being used as a bludgeon tool to educate others or as you eloquently state “rob graves”a step back a visit to view the AIDS quilt (the ultimate in effigy and love a person has shared and yes a panel the size of a grave plot) might bring back the memory of a wonderful life cut short by this thing, this AIDS which is still with us. On the eve of AIDS awareness week here in Canada and soon to be our local AIDS Vigil I will take the time, I am still here, I remember and you will not be forgotten. oh..ps. the wars not over

  7. Emily Brown Says:

    November 21st, 2013 at 7:33 pm

    Hi Mark!
    This was amazing, thank you! Lives cut short are still whole lives, and so much more than cautionary tales to be used for judgmental, prudish advice. I shudder to hear my friends’ legacies reduced to puritanical “lessons learned.”

    Thanks for putting this so eloquently. I love this message and I think youth need heaps of pure, judgment-free love from their elders.
    XO,
    Emily

  8. Jeton Ademaj Says:

    November 21st, 2013 at 7:34 pm

    Sean,

    where is the “PrEP hype machine” you refer to? for that matter, please cite some examples of the treatment advocacy anywhere in the USA (or anywhere) that you feel omits mention of treatment education and only tries to get people to take them?

    i recall you’re a critic of earlier treatment in the absence of still-pending results from the START trial, but your closing statement seems to be an unsupported intensification of your prior position.

  9. Lewis Gannett Says:

    November 21st, 2013 at 7:34 pm

    I turned 17 in 1969, a terrific age to join the gay coup d’etat that was taking over the world. Then came the 80s. Somehow I’m still here, inexplicably negative. Like everybody else of my generation I knew a lot of men who died horribly. And of course, I know fellow survivors. Maybe my experience is an oddity. Be that as it may, here it is: I don’t know any gay people my age who disparage young gay men for having unsafe sex. Really: not one. It doesn’t come up. This is what comes up: an occasional expression of sorrow, and sometimes amazement, that conversion rates are still so high. But that’s about it. I don’t hear older queers harrumphing about boys fucking without condoms. In fact, we avoid the subject because it’s a major downer. That embarrasses me; it makes me feel ashamed, frankly. Especially when I think about young MSM of color and homeless queer youth, about whom we should be raising holy hell. Where’s gay leadership on those issues? What happened to sexual-health outreach? What’s so sacred about marriage, military service, the parade down Normal Street? It seems we need more talk about safe sex. Not less.

  10. Eric Karas Says:

    November 22nd, 2013 at 6:27 am

    I totally disagree with you. I came out in 1990 – I came right out into the community meeting people who had lost ALL not some of their friends. It was so drummed into us to use condoms that I did so even with my first boyfriend and we were monogamous. We were brainwashed into safer sex rules. Thanks to that in 2014 – me and my best friends are mostly HIV negative. (no judgement for any that aren’t) Just saying the message worked. I have now seen HIV prevention places abandon talking to youth about safer sex because it “doesn’t work” or isn’t reaching them. Combine that with all the barebacking porn and expectations of non condom sex and guess what? Young people are not getting the message and at risk. yes they won’t die in 3 weeks but they still might get HIV. Then I saw a whole conversation between 20 year olds from NYC talking about what an asshole Larry Kramer is – (and he kinda is) but they had NO CONCEPT of the gay history of HIV/ACT UP etc and the importance of that man. When I go to documentaries or plays or anything about the AIDS crisis I don’t see a young face in sight. This is something that should NOT be forgotten – the government response, the religious community response, our community response – it is important history and it dishonors the people who died for you to ask people to stop talking about it. I don’t see young gay men being bludgeoned with anything. Except Lady Gaga.

  11. Dave Watt Says:

    November 22nd, 2013 at 7:56 am

    Thank you Mark for this timely article. As we prepare our World AIDS Day events and messaging, this is a great reminder to keep our audience in mind. What impact will our message have? Will our messaging reduce stigma or add to it?
    Kudos bud!

    Dave

  12. TheBrutalKremlin Says:

    November 22nd, 2013 at 12:08 pm

    PLEASE!

    I wouldn’t say anything to these young men if THEY LEARNED ANYTHING FOR THE FORMER DEATHS.

    Facts: HIV is on at 1982 levels, and Seroconversions is rife amoung young 20s; it isn’t ‘fashionable’ to wear a condom; and the porn producers, sauna owners, et. al. are making a FORTUNE off of killing young lives off.

    Yeah, go ahead, keep ranting. Silence (still) = Death. Albeit more prolonged, expensive and isolted than ever before.

  13. Bradford McIntyre Says:

    November 22nd, 2013 at 2:00 pm

    I don’t buy into that our youth are being Bludgeoning to death by the AIDS tragedy. If anything, telling our story is meant to educate and save lives!

    If you talk to many of our youth, they have not had and/or are not receiving HIV and AIDS education. The so called PILL ( many HIV+ individuals are not on only one pill but a handful) is mistakenly seen as a cure and many of our youth now choose not use protection.

    In the GLBT communities world wide, HIV infections not only continue but they are climbing at alarming rates. I believe, non condom talk and barebacking are the driving force. One can read study after study, article after article on the increase of HIV infections primarily among GLBT communities around the world.

    While you voice taking a few pills is the only impact HIV has on your life, I beg to differ. An HIV infection affects every aspect of ones life! There are constant trips for regular blood work, which will be life long. There are side effects of the antiretroviral drugs. One can develop resistance and many are not even able to tolerate the medications, leaving them without treatment. Depending on where you live the HIV/AIDS medications that cause facial wasting/lipoatrphy, are still in use today. An HIV infection may have a negative impact, mentally, emotionally, physically and spiritually. There can certainly be many circumstances to deal with having been infected with HIV.

    HIV can have an affect on relationships and dating .There may be stigma and discrimination from family, friends and co -workers.

    A life of taking medications, which can also get very complicated as we age and need to treat other illnesses and take more medications.

    Those who would make light of an HIV infection or the lack of need to use a condom do a disservice. As long as HIV exists we will need to include talk about using condoms to prevent infection.

    PREP was initially designed for an emergency; if an individual believed they may have been infected due to a broken condom. Now it is seen as an easy out for not using a condom, when there can be serious side effects, especially with continual use.

    Thank you Sean for your comments on the side effects of PreP..

    Personally, I wouldn’t be taking HIV/AIDS medications if I wasn’t HIV+ and I didn’t need them…these are chemical therapy drugs that affect each and everyone of us differently and many experiencing the negative side effects. And the long term effects of PREP will not be realized for many years to come.

    I would also like to say that while you often write about GLBT individuals not using condoms; there are in fact countless GLBT who have and continue to use condoms successfully …those single and in relationships… preventing them from infection and infecting others.
    I have been in a monogamous relationship and it will be 14 years in January, and my partner is not HIV+.

    It is still important to promote condom use and share our story of both the earlier days of the epidemic, as well as, where we are at today with HIV infections.

    Bradford McIntyre
    Vancouver, Canada

  14. mark Says:

    November 22nd, 2013 at 4:37 pm

    hmmmm…..hiv negative here… saw many die.
    i’ll agree to disagree. can’t believe how others can be so nonchalant ……. saying ‘oh well, the kids won’t listen. let them get aids because it’s really not that bad now. kids are gonna do it anyways.
    my god

  15. Hugh Says:

    November 23rd, 2013 at 12:41 pm

    Again? Every M. King story begins with “once upon a time” and ends with healthy gay men taking PrEP drugs and having bb sex. If there is one HIV negative person out there who thinks this is a good idea, please raise your hand. It just has to be noted that the loudest, and most persistent, voices for Truvada are Gilead (it’s manufacturer who’s only goal is to make billions off of it) and HIV positive gay men, many of whom are also promoters of bb sex. Interesting. I have never imagined a dividing line between those who are HIV positive and those who are HIV negative but this campaign is beginning to establish one between myself and at leas one small faction of HIV positive gay men who are intent on pushing this “prevention” method, completely disregarding it’s many pitfalls.

  16. Michael Bouldin Says:

    November 23rd, 2013 at 6:58 pm

    Oh God, fucking finally. This is, hands down, the best piece on HIV/AIDS written in 2013. I have something similar in the works, maybe slightly more cerebral, but if there’s a co-sign function, consider it done. Bravo.

  17. Steve Says:

    November 23rd, 2013 at 8:55 pm

    Hugh.

    You can sero-sort but to your own peril. I am in my early 50’s and have 100% practiced safe sex sense the 80’s. Late last year I tested POZ with no risk factors, I sero- sorted for Neg only. I had a few POZ friends try in vain to explain to me what I am telling you now…I didn’t listen, and frankly I don’t think you will either.

    The hard cold fact is that acute primary HIV infection seems to be the most common form of transmission. HIV is being spread by “Neg” men who do not know they are POZ. yet.

    cART compliant, undetectable POZ men are statistically non-infectious, so why are u beating up on us?

    Personally I choose to BB now because it is great sex! I wont waste my time with a condom EVER again!

    I also choose to have sex with responsible healthy POZ men because I find they are a lot more focused on their health and current STD status. I have vaccinated against Hep A&B and have taken full Gardisil vaccination series

    Curious when was the last time you had a full STD check with throat and anal swabs, urine screen and blood draw for Syphilis? My POZ FB’s get full checks at the very least every 3 months!

  18. Michael Petrelis Says:

    November 24th, 2013 at 1:27 pm

    Mark, Thanks for penning this great column and putting a lot of emotionally fraught gay and HIV issues in perspective. This rings so true and wish AIDS Inc would heed your advice: “The 1980′s are history. They are not a prevention strategy.” I’ve just tweeted a link to this column and hope it is widely read.

  19. Philip London Says:

    November 25th, 2013 at 5:55 pm

    Ok from a London perspective. Been poz 18 years. It’s horrible. Shitty. Rough. Painful. Dangerous (I fall a lot from 90% numb feet from the meds). I’ve had strokes from the meds. Broken vertebrae falling. Wrists. Arm. But…. Yeah. I’m alive and enjoy every day. We can’t bludgeon as you put it the younger gay community or MSM. But we can educate. The best sign of the utter disregard for those who have died is happening in London, right now. THT (the Terrence Higgins Trust) the UK’s formost HIV charity is selling off its main community /treatment/therapy/headquarters, a place where people left their entire legacys too, thinking that it would be there forever. And they got interred there too. Real people, real ashes. Real bodies. And the THT bofffins are flogging it off to make a quick profit, and no one cares. To me, that’s the biggest sign that those who have died really have fallen off the radar. Imagine the outcry if a Jewish community centre where people were buried were to be sold off. Or a military centre. Or a community centre where black history was made, and people from their community were interred. But gay men, long term survivors? ..well…. We are swept under the carpet. The THT board are honoured and knighted. While our sacred spaces are sold.
    Just a thought, from a man in London who feels that no one seems to ‘get it’. No one. And no one cares anymore.
    Were history, members of a gay holocaust that’s denied by the young, we are sero sorted, filed away, ignored…and watch on bemused by the utter madness and stupidity of it all.
    Am I depressed? Sure. Bitter? No. Regretful? A little.
    But I look on in horror, and sometimes want to bludgeon, whack peoples faces in the horror of what we saw, and maybe show them the reality of my day…a pill? Pah! I have 37 a day. I’m not alone, and am so lucky in having the most awesome fella in my life. Without him I’d be dead, I really wouldn’t want to live. Now… When you face the reality of that, I look forward to how those gaga obsessed idiots would judge. Walking in ones shoes Etc.
    Oh well… That’s my thoughts. Time for bed methinks. Way past my bedtime, and overdue for the next mouthful of lovely scrummy chemicals. Oh. Lucky me!

  20. edfuone Says:

    November 26th, 2013 at 2:11 am

    “The war as we once knew it to be…is over.”

    Yes, the battles of that war that we once knew are indeed over. The war, however, has NOT been won, and the war is NOT over. All that has changed are the nature of the battles, and we are still losing.

  21. Mark Hubbard Says:

    November 26th, 2013 at 8:14 pm

    I’d like to respond in two major ways to
    Sean’s comments re: Truvada side effects.

    I agree that potential users need to know both about the known side effects as well as the potential for unknown ones.

    First, however, the science is anything but clear.

    Sean omits that if one googles “Truvada side effects,” (and I’ll skip elaborating on the pitfalls of that) what one will see is documentation of side effects in HIV positive persons.

    He omits that the unclear science on these includes the rationale that they occur as the result of an interaction between the drug and the chronic inflammatory state those infected with HIV experience. We don’t really know if the side effects will be similar in HIV negative users.

    We also don’t know that “And the longer one takes Truvada, the greater the chance of experiencing these side effects,” both because of what’s unknown and because that is not always how side effect manifest.

    Second, and I commend Sean for bringing up the risk/reward analysis, is the question of “compared to what?”

    Just exactly to what should a potential user compare the known and potential for unknown side effects?

    To contracting HIV? Because in some populations that’s a very likely side effect of not adding a complimentary or alternative strategy to their current risk reduction efforts.

    To erectile dysfunction? To an inability ejaculate? Often omitted from these discussions is the fact that in those who experience them, condom side effects directly impact the very experience which they are supposed to protect.

    or in terms of a broader background and context . . .

    To mass incarceration?

    To poverty?

    To smoking?

    To taking drugs made in someone’s basement or bathtub?

    To living in a high crime area?

    To making less in one’s commercial sex work job?

    Yes, people need to hear the full story, and I mean the FULL story. They also need to be empowered to make their own assessment based on their own context and values.

  22. Mark Hubbard Says:

    November 26th, 2013 at 8:22 pm

    Re: bludgeoning

    I love me some Mark S. King and I know he knows how to write a headline.

    Here’s why I think this piece is so important.

    Lazy reminiscing is sucking the productivity out of rooms (where youth are noticeably under-represented) where prevention and treatment planning occurs all over the U.S.

    This takes, as Mark alludes to, two forms:

    “They don’t know what it was like” (as an answer to every issue from increasing infections to barebacking.) Bullshit. What it was like may be interesting but what is important to folks living in the now is what it is like today. Hanging on platitudes and history is NOT doing the job. Out thinking must transcend our experience and focus on the now.

    Which leads me to the second cliche:

    “They think it’s just a pill a day.” Guess what? For many of their friends that’s exactly what it is. So let’s get on with looking at the data, thinking creatively, and asking those impacted about their experiences and enlisting their help with finding solutions.

    That’s what I’ve seen (over and over and over and over . . .

    None of this sweeps history under the rug. Presented properly, history can be interesting to everyone including youth. Too often there is an overt or subtle air of “why aren’t you like we were?” though that sabotages these efforts.

  23. drumstick Says:

    November 27th, 2013 at 2:12 am

    Prep isnt going to help you with syphillis, gonnorhrea, hep C or a host of other infections we forgot about once HIV made the scene.

    Using condoms makes good health sense. Thats the message I got as a 23 year old virgin in 1989.

    But, at 49, when I hear guys tell me “it only means taking a pill once a day” and going on about how it “gave new meaning to my life”, I often think to myself. “What am I affraid of. Maybe it’s just better to get infected and get it over with.”

    If I’m thinking like that at 49, what are they thinking at 29…

  24. Rickster.Trickster Says:

    November 27th, 2013 at 3:07 am

    While I found your article interesting youtoo are guilty or making gross generalizations YOU accuse we elders of. I don’t want to be beaten over the head by young gay men that have no respect for me, my story, my age, my experience. Especially when They as ME about those years and what it is like being a long term survivor. I am NOT irrevelant to the face of aids today. Not all of us as you so well stereotyped are stuck in victimhood.PTSD is real in our community ELDERS that survived Vietnam are also long term survivors of aids so they have a double whammy. Not all older gay me toe the party line regarding prevention, barebacking, condom usage and the like. Believe it or not many of us are well educated men that continue to use our brains and are free thinkers. We don’t ht young men over the head or wag fingers at young gay men. We embrace them as we do each other. Dialogue is best when it comes from an open mind. I submit that ‘elders’ are no more guilty of being obsessed with the 80’s than ‘young men’ are obsessed with telling us we are wrong, irrelevant. uninformed, closed minded victims.
    In my opinion this issue is a draw and the only way out of it is education and discussion

  25. Steve Craftman Says:

    November 27th, 2013 at 8:32 am

    Fact is that PrEP and TasP together are more effective than condoms in preventing HIV transmission. Just a higher risk of other STIs. Is it my imagination or did we think nothing of going for our quarterly STI workups in the seventies? Am I the only one who cruised the waiting room?

    We’ve been living unnatural sex lives for the past thirty years and PrEP (especially) and TasP are helping us return to business as usual. Yes, tenofovir (one of the ingredients of truvada) has some extremely nasty side effects (ask me: tenofovir nearly killed me last last year), but truvada is only the first PrEP drug. Anyone remember AZT? I sure do, and the guys it killed, but I took it anyway.

    Life is a series of risks. We decide to take them or we don’t. I loved my motorbike, but my luck ran out and I live with a permanently broken ankle and my beloved bike was sold for its scrap value.

    It’s important to remember our experiences of the eighties and nineties, but I’m also getting pretty sick of writing posts about my experiences of those times and having to add in a disclaimer (often longer than what I said in the first place) that this is the view/experience of a long term survivor and is extremely unlikely that these issues will ever touch you.

    What we need is an experienced historian, who wasn’t too closely affected by those years and so can write dispassionately about them to write our stories for us. For the future, we need more research into preventative drugs, rather than the endless cry to put a condom on it. We need to reconnect with each other in a natural way, and I don’t care what anyone says, my ass knows when there’s a bit of latex between me and my man!

  26. erikbear Says:

    November 27th, 2013 at 9:49 pm

    …and stay the hell off my lawn! LOL ;)

  27. Bradford McIntyre Says:

    November 29th, 2013 at 2:39 pm

    Condomless sex increasing in US gay men – especially in HIV-negative and untested men
    The proportion of gay men in the US who have had anal sex without a condom at least once in the past year has increased by 9% in the last six years, data from the country’s Centers for Disease Control and Prevention (CDC) reports.
    http://www.aidsmap.com/Condomless-sex-increasing-in-US-gay-men-unless-they-know-they-have-HIV/page/2807818/

    Condoms save lives, but many gay men still are not using a condom putting gay men in the U.S. at the forefront of HIV infections.

  28. Bradford McIntyre Says:

    November 29th, 2013 at 8:10 pm

    All around the world, HIV infections among gay men are escalating!
    One simple reason: many gay men are having sex without a condom are being infected with HIV and infecting others. Anyone who is going to engage in sex should demand a condom be used or say no to sex. We are talking about peoples lives here. An HIV infection is life long.

    Hong Kong: Gay men still highest at risk in ‘record-breaking’ HIV figures
    http://www.pinknews.co.uk/2013/11/26/hong-kong-gay-men-still-highest-at-risk-in-record-breaking-hiv-figures/

    We live in different times and today, sex without a condom is dangerous!

  29. John Lam Says:

    December 2nd, 2013 at 11:22 pm

    I disagree, there’s nothing wrong or unethical about using someone’s plight as a lesson for the current generation. It’s more about how it’s delivered. Are we saying, “if you dont use condoms you will die a horrible death like my friend Lesly,” or are we saying “If Lesly and his friends knew what you know now,…”

    Also let’s take this out of the context of HIV; growing up my parents always used their immigration experience (poverty, lack of education, etc) to encourage me to focus on education. I’ve never personally experienced immigration and all the baggage that comes with it (pun intended!), but I incorporate their lessons into how I pursue my educational and professional goals. So as activist working in the 3rd generation of HIV – why can’t we do the same?

  30. Don W Says:

    December 4th, 2013 at 4:40 pm

    OK, fair enough, bludgeoning doesn’t work. But what would you suggest? There is something seriously wrong with the current situation. It’s no wonder so many older gay men feel like Cassandras.

    How do you propose we address the vast new wave of HIV infections? Are you saying “the kids are all right,” that it’s No Big Deal that half of them are going to blithely acquire a virus that will chain them to an uncertain and expensive pharmaceutical regime for the rest of their lives?

    Your rosy projections about PrEP concern me. It’s a fantastic discovery, and I deeply hope it prevents many unnecessary infections. But even if it were 100% effective against HIV, it’s not a magic ticket to another “glorious” era of condomless sex. There are still lots of very good reasons to use protection.

    Gay men are rapidly recreating exactly what we had in the late ‘70s – and not just the glorious part: a large, closely interlinked network of people engaged in unprotected, multi-partner sex. All it will take is a newly emerging, untreatable pathogen (and they turn up all the time – remember Avian Flu? Hantavirus? Legionnaires’ Disease?) and we’ll have the perfect storm for a devastating new plague.

    There’s no free lunch, and apparently there’s no free love either, unfortunately.

    So, Mark, we’ll put down our rakes and stop shouting at the damn kids to get off our lawns. But what do you suggest we do instead?

    (Thank you for this. I believe we begin with the truth as it is for us today. We don’t inflate it. We share stories of the past with younger folks because it is our history and people performed bravely, not to scare them into behaving to our satisfaction. We take a breath and have the humility to understand how complex and powerful sexual behavior is and has always been, especially when it comes to changing it. We put forth condoms, sero sorting, treatment as prevention, and new tools like PrEP in ways that support people, not shame them. We value individual sexual expression and we promote personal responsibility. We acknowledge that generation gaps aren’t limited to heterosexuals, that it is possible for a new generation to address HIV risk in their own way, that the intersection of grief, blame, and righteous anger is a complicated one, and most importantly, that no matter how hard we work or warn people or share our tales, nothing is going to bring back our loved ones. That truth might be the hardest to really accept. — Mark)

  31. Don W Says:

    December 5th, 2013 at 9:51 am

    Mark, I actually haven’t lost any close friends to HIV/AIDS. I came out in 1993. I remain negative. Certainly the worst of the plague years were stilI in recently memory, but I was never personally affected in the way you and many others of your generation were. So in a sense this is not my history, I am not here to speak on behalf of you or other survivors, and I don’t think I’m coming from a place of trauma.

    But I do work in the public health sphere, and I’m worried. The “sexual ecology” that we are in the process of joyfully creating poses tremendous risks to everything the LGBT community has gained in recent years. I fully recognize how fraught the issue of changing sexual behavior is, at the nexus of human nature, morality and health. But I don’t get the sense that anyone is seriously trying. “Use a condom, every time” is now snickered at like a Nancy Reagan nostrum. But it worked for a lot of men.

    I happen to think that a world full of healthy gay men is a better world. I’m not particularly haunted by ghosts from the past, but I feel a sense of foreboding at the prospects for the future.

    I am utterly perplexed that this is not being taken more seriously.

  32. mike m Says:

    December 14th, 2013 at 2:12 pm

    ok boys.bout time we start talking bout this.i was diagnosed in jan 1990 but prob had it b4..i still think it was manufactured by the gallo.truvada has def changed my lifebeen at the end of the line about 5times with the med cocktails.also have won 6 gold medals 2 silver and 2 bronze @ gay games.hiv poz.so my message is what? it is not the same animal it was in the 80s and 90s and i have believed a long time now that hiv will not kill me. i am 61 boys and lived threw the 70s and 80s in sf and 5 # 1 bars in sf..the amount of gay men i have known to die of hiv is staggering.one thing i have done over the decades is to take vacs from the meds. truvada is the only one that brings me back to undectable ea. time.our kidneys and liver need to take breaks at times. i am not suggesting to others to do so but if you do….stop all meds at once and start all at same time again.

    i work full time and plan on to 70.i wanna be here to watch gallo be brought down for developing it and administering it to the world. and all my dead lovers and friends

    back in 1980 wrking @ the I-BEAM and it first hitting SF i read a report in the cron bout how hiv was offered to NATO…AND WAS TURNED DOWN.the article was reprinted form a DUTCH paper. was offered to NATO as a population control in AFRICA.surprised?our gov has been working on diseases since WW2 and just put all the NAZI and Japanese biological scientist on the payroll.and looks like they have been busy over the decades.

    (*sigh* — Mark)

  33. Scott jordan Says:

    December 23rd, 2013 at 2:59 am

    You’re an idiot. Talk to me in ten years about how great the new drugs are.

    (I’ve been on meds for 25 years already with no side effect that a change in regimen did not fix. In another ten years, there will be multiple drugs available for PrEP and the rest of the HIV spectrum. Any questions? — Mark)

  34. QNetter Says:

    May 16th, 2014 at 6:15 pm

    Eric was a good friend of mine too. He would be proud of what you do here.

  35. Phil Says:

    May 16th, 2014 at 8:16 pm

    Yeah Eric would love this. Good work and well written. It’s a new day and not everybody sees that. That’s OK.

  36. jawnbc Says:

    May 16th, 2014 at 8:46 pm

    The “cocktail” came on the market in 1995–less than 20 years ago. So no one’s been on “meds” for 25 years, unless you count the non-productive, highly toxic AZT that was taken en masse in the absence of any other treatment options besides prophylaxes. Most people got access to some version of the current treatment regime from around 1999 onwards–15 years ago, in other words.

    There are two problems with Truvada as PReP. The obvious one is that PReP doesn’t stop any other STIs and we’ve seen explosive epidemics of syphillis, gonorrhea and other STIs in poz guys over the last 10 years. Were I poz and having sex with another poz guy I might well consider not wrapping up. But based on the epidemic of syphillis in particular–which, if untreated or untreatable, will kill you–probably not very often. Except with a primary partner–but then again my husband and I haven’t used condoms with each other for a decade now.

    The second problem is that men are being told to take the treatment to prevent having to take the treatment. If not taking Truvada means eventually becoming positive and THEN taking Truvada, doesn’t it make sense to wait until you’re infected? Otherwise you’re just extending the time on the drug. We have ZERO data about how tolerable Truvada is beyond 10-15 years. Most effectively pharmaceuticals develop intolerable side effects–some about quality of life, others about staying well–in the longer term. There is no reason to assume Truvada is different. We certainly know that a lot of the first generation “cocktail” users developed other meds-related issues that made them sick or killed. them.

    I would argue that folks in serodiscordant relationships might find some real value in Truvada as PReP–especially for the poz partner who fears infecting their neg one. That’s not how PReP is being rolled out.

    The big beneficiaries of PReP are the manufacturers of Truvada. They will get even more obscenely wealthy by trebling or quadrupling their “market” for this very expensive drug.

    In a decade we’ll be mourning the unintended consequences of PReP’s roll-out among queer men. Sadly.

  37. John Butterfield Says:

    May 16th, 2014 at 11:45 pm

    Really? As a 53 year old gay man with most of my generation in the ground I cannot disagree more. I am not whining and telling you to do as i do,nor do I blame those who passed for “bad” lifestyle choices. I am telling you you are clueless as to the loss we suffered.

    Its manageable, I’ll take PREP its just something I can live with ….. Great. Yes a lot has changed since that time meds are better (who is getting rich off that ?) something you should think of as the pharmaceuticals are in no hurry to find a cure as they making money hand over fist. If the cure is found in the west especially in the US who will get the $ and how much will it cost?

    I see a lot of reckless choices being made all i can say is i hope they have healthcare, who do you think is forking over the money for all those meds?
    Its not just about you! your choices affect all of us one way or another. Grow up.

  38. Rick Guasco Says:

    September 4th, 2014 at 3:01 pm

    Of all people, it’s hard to imagine gay men guilt-tripping other gay men. I’d always been the type of person to second-guess myself or think, “if only…”, but when I tested HIV-positive in 1992, the first words that came to my mind were, “no self-recrimination.” There’s nothing anyone can do to change the past. We can learn from it, but all we can do is go forward.

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