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January 18th, 2011

Five Things About HIV (They’re Not Telling You)

In the early 1990’s, I was invited to participate in a roundtable discussion with national public health officials. They wanted to gauge what those on the front lines were thinking about HIV/AIDS prevention campaigns. I gave them an earful.

“Why won’t you tell gay men that being a top is less risky?” I lamented. They always resisted “promoting” anything that might conceivably transmit HIV, no matter how remote the odds, and it drove me nuts. “Give us something to feel better about…” I said. “Won’t you even say that oral sex is lots safer? Why can’t you throw gay men a bone?”

Gay men are still forced to piece together the latest facts about HIV, largely due to the reticence of public health messages — or in some cases, just plain homophobia.

Thank goodness for people like Sean Strub, lifelong AIDS activist and founder of POZ Magazine. In his blog posting on Poz.com last month, Sean joined a chorus of advocates who are furious over a fearful New York City public health commercial. The spot says “it’s never just HIV,” and shows horrific HIV outcomes that include broken bones, insanity and even a gruesome shot of anal cancer.

GrimGrab5Sean sees the campaign as another example of how public health gets it wrong, investing in failed “fear-based” messages while keeping a lid on information that could make a real difference.

In this video episode of My Fabulous Disease, Sean and I discuss five things we believe either represent what is wrong with prevention campaigns, or demonstrate strategies being ignored by public health officials. Pay attention to my links in this post, because I document the research and campaigns we discuss.

We refer to Swiss experts who suggest people with HIV with undetectable viral loads may be non-infectious (for more on this topic check out a great video interview with AIDS physician Paul Bellman, M.D. and his article “Vanquishing AIDS” posted on AIDSmeds). We discuss an infamous 1987 Australian commercial called “The Grim Reaper,” (photo, above) and refer to research that concludes that fear-based messages do not change long-term behavior.

TaikoYou might enjoy comparing the difference between the NYC “It’s Never Just HIV” spot (in all its frightful foreboding) to the endearing, life-affirming Japanese campaign “Little Taiko Boy,” (left) which presents sexuality in an honest and entertaining manner — complete with music, shirtless dancers, and a drag queen goddess! By the time the goddess presents the film’s lovers with bejeweled condom packages, I was enchanted… and happy for them and their impending bout of safer sex.

Does anything in our talk surprise (or offend) you? Did you know HIV negative people could take a drug regimen immediately after exposure (sexual and otherwise) and greatly reduce the risk of becoming infected? Do you agree that stigma against those living with HIV may be greater now than ever before? This is an important community discussion, and I’m always up for constructive debate or dissent.

Meanwhile, my friends, please be well.

Mark

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Guess what, everybody? This is my 100th posting on My Fabulous Disease! I want to thank you for your warm welcome to the blogosphere since I launched in March, and I hope you will help celebrate by sharing this post with friends or colleagues. And I just joined Twitter! Follow me @MyFabDisease. Thanks!

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15 Responses to “Five Things About HIV (They’re Not Telling You)”

  1. Mark Hubbard Says:

    January 18th, 2011 at 9:34 am

    Love you Mark and love you Sean.

    I have some small criticisms and some big kudos.

    On point #1, I wish you had said, “in situations where one partner is positive and one is negative, an undetectable viral load may rival a condom.” That’s a stronger and more valid point. For an average person in an average U.S. city, however, I think the point as you made it is tenuous, simply because most of his or her partners are likely to be HIV negative and incapable of transmitting HIV. Kudos for making the point about unknown (and implying acute) infections and mentioning a belt and suspenders. We musn’t forget that overcoming inhibitions about talking about sex before having it could be a big help.

    Big kudos for getting on one of my favorite soapboxes – PEP. It would have been more balanced, however, to mention one study that showed that gay men who were given starter packs were rarely good at knowing when to use and actually using them. This isn’t an argument against PEP or starter packs, but it’s an argument for both comprehensive PEP programs that include awareness campaigns and further research on how to best implement PEP.

    Thanks for giving NYC hell about an (almost) laughably rediculous NYC ad.

    Keep up the great work guys.

  2. Jim Baldridge Says:

    January 18th, 2011 at 10:03 am

    I loved this video! I love your take on things – bold as brass and devil-may-care! These 5 things we discuss here at The AIDS Project of Central Iowa quite often, especially the fear tactics don’t work point. I am a drag queen and have been a – if I may say so – pretty hard worker in the HIV/AIDS fund raising and awareness front here in Iowa. I have been shouting into a microphone for YEARS – wear a damn condom, don’t die! And they smile at me and cheer along with me, then bareback anyway. I figured it out that I can yell and scream and throw startling stats in these gay boy’s faces til the cows come home but they are gonna do what they want, no matter what I say. So, what do we do? How do I as a performer who really cares about this topic and the kids at the bars, how do I get the message across – be safer, be aware of HIV/AIDS, care about their sexual health – and NOT use those old ACT UP slogans and stuff? I need to change my script as the world changes its script. Watching this video will help me, but comments here and other places would be very helpful.

    Thanks for this video and the whole series!
    Jim

  3. Bill K Says:

    January 18th, 2011 at 10:41 am

    Great piece, Mark! On a side note, that’s the first time I saw the two ads that you mention. I’d heard about them, but never saw. Scary stuff!

  4. Nick in Iowa Says:

    January 18th, 2011 at 12:38 pm

    Well done both, as usual. PEP is a mushrooming topic that I’m fairly confident will be discussed in depth at a conference in Iowa City soon held by the University of Iowa Hospitals and Clinics. I hope everyone knows how serious it is to actually start PEP, however. This is not the morning-after pill or just taking a couple of aspirin. These drugs can be seriously impacting on the person taking them, and the effects should be known — but as Sean points out, if it can prevent an infection, the benefits will far outweigh the sickening/serious side effects.

  5. Junior Says:

    January 18th, 2011 at 5:54 pm

    To me, it seems like nothing is working. It seems to be a damned if you do and damned if you don’t situation. You can post all kinds of ads and gay men are still going to become infected and practice risky behavior. You have a group of gay men who want to become positive (bug chasers, etc). You have a group that acts like it doesn’t exist because they haven’t come across it so they will sleep with guys that they think are cute and do risky things with them. You have guys who are lonely, desperate, etc and when they do finally get someone in a sexual situation; they will allow just about anything just to keep the guy next to them as well as get that chance to actually have sex. Also, you have to get through the alcohol and drugs as well.

    A lot of times when people are getting ready to have sex, the emotion is so high; they aren’t trying to talk or remembering ads. The strength/urge that happens when you are kissing, licking, rubbing, and getting real close to penetration overpowers everything. We have to figure out a way to battle everything I mentioned above.

    Lastly, when talking about HIV/AIDS, it good to have fear ads. There is a lot of fear that comes with being HIV+. The variable/unknown of the disease is scary as hell. There are a lot of other diseases that come along with the package that a lot of HIV+ people deal with. Showing positive pretty people living with the disease isn’t helping just like everyone is saying the fear ads isn’t helping. I have 3 positive friends who constantly tell me that so many guys are willing to sleep with them without ever even mentioning a status. A lot of them will ask for their loads not knowing they are positive. There have been several times where they will tell the guys that they are positive and the guys will say well just don’t come inside me; pull out when you get close.

    I’m really not trying to be pessimistic but it seems like people are just going to go with their fantasies, feelings, etc and we just have to keep treating them once they become positive and keep hoping for a cure. Hell, we can’t even get the HIV+ people to stop having bareback sex with other HIV+ people. If my HIV+ roommate comes home with gonorrhea and syphilis one more time, I’m going to scream and tear this house up. I’m scared for the negative roommate because he has had some STD’s like 4 times which tells me a lot and I’m so scared that he’s going to come here one day and say, “I’m positive.” Sorry for rambling and going on; this argument just seems useless to me sometimes because NONE of the ads (fear ones or creative ones, etc) are working. :-(

  6. Sean McShee Says:

    January 19th, 2011 at 12:07 am

    Mark and Sean,

    Loved the Japanese ad (but are the English lyrics dubbed over original Japanese lyrics?). A couple of point

    First thing they’re not telling us – I have some questions about this. The Swiss study concerned monogamous het couples which means it really can’t be generalized to gay men in non-monogamous situations. As viral load tests always refers to some time in the past, viral load can change. From what I understand, infections such as syphilis will increase CD4 counts. As these are the cells that HIV targets, these infections can cause viral load to spike. Given high rates of syphilis among HIV positives, I think this raises a serious problem. I think this is going to be a major argument within the community for the immediate future as test and treat or testing and linkage to care plus are the only treatment as prevention techniques that are relatively cheap and work on two levels (treatment and prevention). In the current political fiscal climate, we cannot expect immediate funding for either Pep, PrEP, or even microbicides which does not mean we should not be demanding access to them. If this is correct, we really need to have a thorough discussion of the differences between group level variables (averaged community level viral load) and individual level variables (individual viral load test results from some time in the past). This is critically important as group level data will be more stable than individual level data. It’s true that group level data is composed of individual level data, but individual level data will vary randomly in many different directions. If the number increasing viral load matches the number decreasing viral load they will tend to cancel each other out.

    I am surprised that you didn’t list among the things that they are not telling us, sero-conversions in the context of relationships. Given romanticist bias, people tell to down play risks in relationships compared to recreational or commercial sex. Yet some studies have some a substantial number of sero-conversions in relationships. Partly this is due to more opportunity for sex in relationships, but it is also due to factors, such as intimacy, inherent in relationships (however one may define them) that make condoms particularly problematic in relationships. We may need public health campaigns targeting specific contextual issues and how to compensate. For example in the late 80s I was working in an HIV prevention program targeting needle users, predominantly het. We had to develop a strategy for het monogamous couples that wanted to have children. I remember telling people that both partners should test simultaneously to confirm baseline status and continue using condoms and being monogamous for another six months, then retest. If both parties tested negative the 2nd time, then they could try to have children. Given my history with relationships, I’m the last person anyone would go to for relationship advice (unless they wanted to sabotage one), but some strategy like this might be an honest way to discuss HIV risk in the context of relationships.

    Finally, some of the ‘them’ telling ‘us’ is also ‘us’ but in the context of a hierarchical bureaucracy that tends to be politically risk avoidant. And if there were more jobs available in the field, many more of use would jump at the chance to work in something useful, meaningful, and interesting.

    Thanks for starting this discussion.

  7. Max Smith Says:

    January 19th, 2011 at 4:29 pm

    At age 56 I’ve been sexually active with men for the entire HIV epidemic. On 01 / 10 / 2011 my HIV test was negative. How is this possible? My primary means of sexual expression is frottage…. face to face body rubbing to ejaculation without anal penetration. Because skin is waterproof, whether a partner is poz, neg or of unknown HIV status does not matter. What matters is my mantra No Anal Sex In Any Position, No Exceptions. A 1% condom failure rate is an unacceptable risk when a permanent infection is on the line. Also, oral sex is safer sex, and without a condom enhances intimacy. For those partners who want to get off with anal sex: a dildo or vibrator is used.

  8. Don Says:

    January 20th, 2011 at 1:22 am

    Love the facial scruff Mark. Grrrr

  9. Sue Says:

    January 20th, 2011 at 8:50 am

    Who knew this and didn’t speak out?

  10. 5 Things About HIV They’re Not Telling You- by Mark S. King : HIV Education: Speakers, Author, and Humorist Says:

    January 21st, 2011 at 10:14 am

    […] S. King of the wonderful site, My Fabulous Disease, recently sat down with Sean Strub to discuss “Five Things About HIV They’re Not Telling You”.  It’s the antithesis of Death Anus, in that they discuss real science and hopeful […]

  11. Timmy Curtis Says:

    January 21st, 2011 at 3:56 pm

    To Max Smith: As someone who has used well over 250 condoms (that’s a guestimate, but it’s probably more) and has NEVER had one break while topping or bottoming (using various brands and generics), I can say that proper lubrication and “installation” goes along way to ensuring they do not break during intercourse. My status is still negative after 20 years of anal sex.

  12. Max Smith Says:

    January 22nd, 2011 at 2:46 pm

    Good for You and may You continue to be blessed. After choosing never to have anal sex, I lost interest in it. What still worries me, and the reason for my extreme position is having seen the devastation of HIV in the 1980’s, seeing the early deaths of people on HIV meds in recent years to organ failure (heart attack etc) and knowing about the increasing rate of numbers of people in recent years who still are becoming positive for HIV.

  13. Jamie Says:

    February 6th, 2011 at 9:29 pm

    Mark thanks ever so much for your information and input on HIV and AIDS. My husband was diagnosed in January 2009.The doc immediately began testing me. I’m tested every six months. We don’t know how he contracted it. When he was diagnosed he was in full blown AIDS stage 4–5. Our infectious disease doctor has told us both that most folks whom get AIDS usually have been carrying it for 10 years. Before it ever makes them sick of they ever start having symptoms. He’s always been a faithful husband. And although he says I’ve the only one that he’d ever been with.The doctor has told us that most people contract it sexually.

    Mark you really touched me by the information that you took the time to share. Thanks again very much.
    Jamie

  14. Czarina Flo Says:

    November 10th, 2011 at 12:23 am

    I sure came to this wonderful video late!
    But better late than never to watch your entertaining and informative take on such vital issues.

    Just to hear mention of Eric Rofes’ radical -for-the-time wisdom – smothered by the establishment still! – that gay men’s love and gay men’s sexual lives are as valid as anyone else’s brings memories of him back to me. A visionary.

    I just came across – well, str8 old ladies are slow on the uptake, understandably – a most wonderful resource that, IMO, does things right to hopefully effect change in the younger generation: http://www.dcfukit.org/

    Thanks Mark.
    Love, flo

  15. John Jordan Says:

    May 8th, 2012 at 12:06 pm

    I’m positive with a CD-4 count of less than 200 my doc said to me and my wife to start using condoms every time we have sex so i stop trying to have ex wife my wife which almost ruin our marriage in fear of transmitting it to her and cause a rift between us but don’t worry we have had sex just oral sex me going down on her her not giving me BJ”s which i miss as well as penetration and a normal sex life drove me nuts just thinking about the life i once had my wife is negative thanks the lord:) it was a close call for me over a year ago was fairly sick but my meds helped so i live on with a new outlook on life i crave more info on HIV /aids, the reason she is negative is a birth defect at my end my doc tells me my sperm can’t get out but still experience per-cum in which they tell me i may give her HIV well if that’s the case she should have it right be have been together for over a decade and never used condoms so what the fuck just confuses me to no end really not scared of my illness now which helps my marriage we are so in-love so whats your take on this????sincerely J.J:)

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