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HIV/AIDS Blog Central

My Fabulous Disease

Five Things About HIV They're Not Telling You


A Video Blog

By Mark S. King

January 12, 2011

In the early 1990s, I was invited to participate on a roundtable with national HIV/AIDS public health officials. They wanted to gauge what those on the front lines were thinking about HIV 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 publicly resisted "promoting" anything that might conceivably transmit HIV, no matter how remote the odds, and that attitude drove me nuts. "When you don't acknowledge what gay men already suspect," I told them, "you lose credibility! Give us something to feel better about engaging in… won't you even say that oral sex is a lot 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 just plain homophobia.


Episode 28: Five Things About HIV They're Not Telling You

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.

Sean 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 what strategies are being ignored by public health officials. Pay attention to my links in this post, because I document the research and campaigns we discuss.

Grim Reaper

Photo credit: National Advisory Committee on AIDS (NACAIDS)

We refer to Swiss experts who suggest people with HIV with undetectable viral loads may be non-infectious. We discuss an infamous 1987 Australian commercial called "The Grim Reaper," and refer to research that concludes that fear-based messages do not change long-term behavior.

You might enjoy comparing the difference between the NYC "It's Never Just HIV" spot (in all its frightful foreboding) to the life-affirming Japanese campaign "Little Taiko Boy," which presents sexuality in a straightforward manner (complete with music and sexy-time lyrics!).

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 hope you will consider sharing this with friends and colleagues. I'm always up for constructive debate or dissent.

Meanwhile, my friends, please be well.

Mark

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Visit Mark's live blog at www.MyFabulousDisease.com.

See Also
Fact Sheet: HIV/AIDS and Young Men Who Have Sex With Men
Quiz: Are You at Risk for HIV?
10 Common Fears About HIV Transmission
More Personal Views on HIV Prevention for Gay Men

Reader Comments:

Comment by: Charles (Old Bridge, NJ) Thu., Apr. 7, 2011 at 2:19 pm EDT
Amazing video Mark.....Very informative...Being only diagnosed since July 2010 I am still in that phase of early fear, regret, anger etc....but everyday goes by and I embrace my status more and more and make the true me come through.......The most important point you made was the "Gay sex has meaning" comment. Demonizing being gay is by far the most damaging thing I have heard from others. Noone ever openly blamed Straight people for all the other STD's but yet STD awareness by straights has been largely a matter of gays vs straights...I always remind straight people that they did nothing to be straight and I did nothing to be gay. The notion of being gay makes you less than our sraight counterpars is insulting....

Keep up the great work!
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Comment by: Robert T. (Cleveland, OH) Fri., Apr. 1, 2011 at 6:33 pm EDT
As the previous editor of a gay paper, I was asked about 'G.R.I.D.' remember that?! I tossed it off as 'a Republican plot [pre-Hillary!!].
Well, I agree with 'tossing gays a bone'. We KNOW more through experience than anyone gives us credit for. As a long-term survivor, I KNOW we need the nasty images. Nicey-nice HIV prevention messages don't cut it. HIV is nasty. HIV is deadlly. Soft politcally-correct, puppy-dog slogans are NOT effective. If they were then the HIV infection rate wouldn't remain at 50,000+ a year!
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Replies to this comment:
Comment by: Bobby (Cleveland, oh) Wed., Apr. 6, 2011 at 1:41 pm EDT
Anyone smart enough to operate a condom already knows this disease is a waking nightmare. Thats why people almost run screaming when we disclose. We hear enough excuses for why we are stigmatized, we don't need to pretend that it's a prerequisite to stop 21 year olds with the IQs of turnips from reenacting the seventies. What floors me is why so many people in our little infected community feel like this type of commercial is acceptable.


Comment by: Anonymous (Oz) Thu., Feb. 24, 2011 at 4:11 pm EST
I remember being 9 or 10 when that australian PSA aired, it was horrible and as a young gay boy it completely freaked me out. Safe to say that ad screwed up my sex life for the next 20 yrs. Here in Oz they still refer to that Ad as a huge success in hiv awareness.. but youíre article is spot on - 20 yrs on and iím poz. so its long term effects were none - other than cause stigma.
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Comment by: Drew(Sydney AUS) (Sydney , AUS) Mon., Feb. 7, 2011 at 2:01 am EST
Also another note ....In Australia PEP is given Free from any emergency Room of any Public Hospital. Or AIDS Clinic.

Real Universal Health Care !!!

Its time to come Down Under.

Love the Blog !! Very Informative .
Reply to this comment


Comment by: Drew(Sydney AUS) (Sydney , AUS) Mon., Feb. 7, 2011 at 1:03 am EST
Hey Mark,
Indeed fear campaigns do not work (as seen in the Aussie Commercial in 1987) But it must be noted that Australia has one of the lowest infection rates in the western world. Why?????

Because unlike the USA which ignored the early HIV/AIDS crisis with the "head in the sand " approach by Reagan. In Australia as early as 1983 the Hawke Labor Govt created AIDS COUNCILS in each state.
Australia is a success...sadly the USA lags way behind.

Cheers,
Drew xx
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Comment by: Freddo (Baltimore,MD) Thu., Feb. 3, 2011 at 6:34 pm EST
This is a continuation of my last comment. Don't worry almost done.

Although I understand the importance of checking for STD's in cases like mine, what irritated me the most was Dr. Giggles insistence that it could be an STD. He even asked me if we, my partner and I always use condoms when we have sex!

I found all of this annoying, simply because of his presumption that if I, his patient, is a homosexual, there is a higher possibility that I would have an STD. He never assumed that it might be connected to my history of UTI's, and cancer. Moreover, he never acknowledged my declaration that an STD, although possible, was most remote because I am in a monogamous relationship.

Long story (I know maybe too long) short, is that I immediately had that feeling that I was being assumed perceived as promiscuous, something I've never been. Not to place any judgment on anyone who has had many sexual partners, frankly I don't care how much anyone screws around, but I haven't, hard as I tried, I have had a limited partners, even if I have contracted the granddaddy of all STDs. His assumption was vexing to say the least.

I am now in the process of looking for another primary care doctor. I always aim for the pocket.
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Comment by: Brandon (Encino, CA) Wed., Apr. 6, 2011 at 3:55 pm EDT
"it only happens to whores" aka "HIV is a very difficult disease to contract" is almost certainly the most appalling lie foisted onto Gay America within the last decade or so. Somehow we've gone from "all it takes is once" to the widespread perception that HIV is foreshadowed by loads and loads of other STDs which, according to various estimates, are more easily transmitted. Neither I nor any other HIV+ person I know got a burning sensation or a funny wart before being declared positive. Still, the perception prevails that no one "starts out" with just HIV, and with it the stigma that we are all reckless sluts. Continually restating how supposedly unlikely transmission is does us a disservice, and it does a disservice to anyone trying to negotiate risk.


Comment by: Freddo (Baltimore,MD) Thu., Feb. 3, 2011 at 6:18 pm EST
I was summarily floored with #2, on the list. Very recently I developed an urinary tract infection, one of many that I have had since having gone through radiation treatment for, unfortunately, anal cancer. Yes, I'm one of the HIV positive, gay males whom have had the obnoxious "luck" to have been diagnosed with an anal cancer.

Fortunately, it was caught very early, and was assured that it wasn't associated with HIV or HPV, for which I tested negative, at all; hmm.. I don't know, maybe, maybe not. However, there is a history of cancer in my family, my father died of stomach cancer. I survived both the cancer and even worse treatment. and am back to my "normal" self again.

At any rate, back to the more recent event. Yes, went to my primary doctor, whom for one reason or another, I don't like very much, to report the latest manifestation of my UTI, which is, in all transparency, for the sake of my ranting, a swollen testicle, which materialized overnight. Luckily or strangely, I had an appointment with him that very day.

On doing some research, I found many possibilities for the latest bothersome condition: Orchitis, epididymitis, or the mumps! Yes! Men can get develop testicular mumps! Who knew? I thought, "Okay, at least it's not cancer." But you never know. So I waddled to the doctor with my complaint.

Now what I found interesting, and extremely irritating, was that during the examination, Dr. Giggles', as I call him, as he never cracks a smile, first diagnosis was that I might have an infection due to gonorrhea or chlamydia. I was surprised, as I have a partner, and we don't stray. Unless my partner, who is a resident at a Catholic hospital, and unless he's living in a hidden alternate Grey's Anatomy life, or shtupping a horny nun, both of which I doubt, because he barely has the energy for me these days, I could have not have acquired an STD!

Even after stating that we were monogamous, he insisted that I'd be tested for an STD, "just in case".
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Comment by: K White (Hong Kong) Fri., Jan. 28, 2011 at 2:37 am EST
Dear Mark,

I read with interest your article "Five things about HIV".

Not being well versed in U.S efforts to tackle HIV, I am not in a position to comment. However my company is involved in HIV research and is currently performing clinical
trials on a new NATURAL HIV drug which lifts CD4's and drops the viral load to greater levels than any ARV on the market and of course being natural it has no side effects.

So we have been seing a number of people living with HIV and certainly while it is no longer the death sentence it once was, many people with HIV are living with horrific
consequences and very real sickness due to side effects of taking cocktails of drugs.

What is happening in many countries is that we are seeing a number of HIV campaign groups, in an effort to get more people tested, coming out and saying effectively that
having HIV is not a problem. Recently I had my test done in a clinic in Hong Kong (where I am based) and had to endure the pain of the test nurse telling me that "if it does turn
out to be positive, you need not worry as these days you just take a daily pill and all will be fine" so in their effort to portray living with HIV as having a mere cough, it is
spurning a whole generation of young men particularly MSM, who take zero precautions, only have unprotected sex and believe as long as they are tested regularly and therefore
are aware they have HIV (if they do) then its ok!

The future consequences of such ridiculous claims I believe will be catastrophic.

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Replies to this comment:
Comment by: Freddo (Baltimore,MD) Thu., Feb. 3, 2011 at 6:39 pm EST
Dear K. White,

What exactly is this "...Natural HIV drug", and where can we get information about the research?

Freddo


Comment by: JOEY (n.y.c.) Tue., Jan. 25, 2011 at 8:46 am EST
Ive know for some time that being undetectable cuts the transmission rate by ninety two percent which leaves a small window for infection.If you use a condom, zero chance ,if the condom breaks, PEP TREATMENT.There's no way if you follow these simple steps will you transmit the disease to anyone.Because of desperation at the Board of Health to stop the transmission rates among gay men and African Americans i might add that are solely attributed to risky behaviors they have decided to use scare tactics which will make things worse for people who are not educated to the above mentioned.Something has to be done about these dummys at the Board of Health. Just because there are certain populations that practice risky behaviors does'nt mean we should scare the entire population out there.Stupid Stupid Stupid!!!!!!!!!!!!!!!!!!!!!!!!!
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Comment by: Shawn (New York) Sat., Jan. 22, 2011 at 2:38 pm EST
I so agree with this article. I wish I had known about Post-exposure prophylaxis. I never even heard of it until long after it would have been useful. Why are these things not made common knowledge?
Reply to this comment


Comment by: Matt (NYC) Fri., Jan. 21, 2011 at 12:02 am EST
Thank you for this excellent video and commentary.
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Comment by: Kurtis (St Petersburg Fl) Tue., Jan. 18, 2011 at 3:24 pm EST
How ironically I was just discussing with my girlfriend "things they dont tell you" and then I stumble across this post. I have already found your youtube page and subscribed to it. I am sure there are more than 5 things they don't tell you. Thanks again.
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Comment by: fogcityjohn (San Francisco, CA) Mon., Jan. 17, 2011 at 3:37 am EST
Excellent video and comment, Mark. I think one thing you and Sean discuss in your video (and that Gus Cairns mentions in his comment) bears particular emphasis, and that's the question of credibility. If HIV prevention campaigns are going to be effective, they must be seen as credible. And they won't be seen as credible if they're telling gay men things that aren't true in most cases. The fact is that a young gay man with HIV who's on treatment is highly unlikely to develop osteoporosis so severe that his bones break. So why does New York's department of health want to damage its credibility by suggesting otherwise? They need to realize that if people discover that PART of the message is false, they may conclude that ALL of it is.
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Comment by: Sid Jjk (India) Fri., Jan. 14, 2011 at 1:43 pm EST
'tiz time 2 accept open discussions,guyz...
Burn(wish I could use an 'F'-word here) the taboos!!!Especially towards Homosexuals,sex workers etc.
Y can't V juzz stop Bng concerned'bout
"whom the person has sex wid??"
To 5t wid HIV,1st thng V gotta do izzz,
WE MUST GROW UP!!!
Reply to this comment
Replies to this comment:
Comment by: Freddo (Baltimore,MD) Thu., Feb. 3, 2011 at 6:48 pm EST
No offense meant. Although I agree with your sentiment, it wuzz aw4ly diffycult reedng yr post.

F


Comment by: J.D. (Lexington, KY) Fri., Jan. 14, 2011 at 9:44 am EST
I'm an 18-year HIV Prevention Specialist for my state health dept., I've been to my share of AIDS conferences, updates, and Gay men's health summits over the years, AND I've been living with HIV for approx. 20 years ... so I think I'm as well-informed as anyone else.

While it is true that adhering to meds and having an "undetectable" viral load makes one far less likely to transmit HIV via blood and sexual fluid, I think using the term "NON-infectious" is irresponsible. MY viral load is clinically "undetectable," but I still would never dream of being a top without using a condom. Does an undetectable viral load absolve me of any obligations for self-disclosure? How many HIV-negative men do you think would want to have sex with an HIV-poz man even IF he claimed his virual load was undectable?

YES, Mark, being a top if FAR less risky, especially if there is no blood exposure during sex. And YES, the risk of becoming infected with HIV by giving a blowjob to someone with HIV is quite low, especially if one's own lips and gums are in good shape; but even so, would it absolve me of responsibility to self-disclose to someone who wanted to blow me? This is a BIG ethical dilemma, and I don't think it's fair to dismiss such concerns as being nothing more than "fear-based."

I'm sure things are quite different in Los Angeles, where you have a thriving, active, and highly-visible LGBT community, and where attitudes toward HIV/AIDS and people living with HIV/AIDS are probably much more progressive. Out in the Vast Gay Hinterlands, however, "fear" is not so easily dismissed.

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Replies to this comment:
Comment by: Mark S. King (Ft Lauderdale) Fri., Jan. 14, 2011 at 1:42 pm EST
Thanks, J.D. Strictly speaking, "undetectable" and "non-infectious" are not the same thing, and I'll make the distinction more carefully in the future.

But research certainly indicates that those who are undetectable for a length of time have very little chance of transmitting HIV sexually. That's simply a fact. Your passionate views of "obligation" and "responsibility" notwithstanding, this isn't a moral argument (AIDS is fraught with those already) but a practical one. We are simply providing facts from which people can make well-informed decisions.

And neither Sean nor I discussed disclosure in this video -- that's another topic altogether. Neither did we absolve anyone of the need for disclosure. You've confused our conversation about fear-based prevention campaigns with your own views about disclosing one's HIV status.

I'm sure fear rules in places near and far. My objective here is to get past it, and have a conversation more complex than blame, fear, and simplistic answers. The dialogue continues!
Comment by: Freddo (Baltimore,MD) Thu., Feb. 3, 2011 at 7:08 pm EST
I agree with your conclusion that sexual responsibility toward others is a fair enough stance to take in this day and age. Also agree that life is very different if rural areas around the country. Your points are well made. However, it is just as difficult to get the message across, even in cities like LA and NY, considering the distinct cultures within our cities. Fear is fear, no matter where one lives. Moreover the same goes for fear mongering.

My thought, as a HIV positive gay male, who has also worked in HIV/AIDS prevention for that last 15 years, is why does the responsibility of disclosure and/or prevention fall squarely on the shoulders of HIV positive people? Why don't HIV negative people take the initiative and insist on using condoms or performing safer sex as whatever that means to them? I know that there are a multitude of reasons why, for some, but in the gay world, there shouldn't be any. HIV negative gay men have to become more educated about our sexuality, more aware of what HIV/AIDS is or isn't, and less prone to aligning with those who condemn us as a whole.


Comment by: Peter (Bruges, Belgium) Thu., Jan. 13, 2011 at 4:03 pm EST
The Swiss statement helped me a lot talking about my hiv status with my new partner !!!
Love the Japanese Campaign.

Peter
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Comment by: Gus Cairns (London) Thu., Jan. 13, 2011 at 10:31 am EST
Hi Mark,
I've finally got round to reading the paper that Larry Kramer says supports his view that fear-based messages work, and which Sean Strub says supports his view that they don't.
(Devos-Combey and Salovey 2002: Applying Persuasion Strategies to Alter HIV-Relevant Thoughts and Behavior - Rev Gen Psych 6:287-304).
It's the best thing I've read on this topic.
Well, these Yale profs find that fear-based messages CAN sometimes work, but they only work in HIV in people who are sexually inexperienced and currently at low risk: i.e. they might stop gay boys new to the scene barebacking but they won't get experienced boys to start using condoms.
More importantly, though, fear-based messages only work if ALL FOUR of these conditions are met:
1) People are convinced that the thing talked about really IS dangerous;
2) They feel personally vulnerable to it themselves;
3) The ad provides a strategy people can use to avoid the threat (e.g. 'use a condom')
4) They personally feel able to use that strategy (self-efficacy).
The New York ad?
Well, it scores 100% on condition 1, no doubt there. Scary or what!
As I've said elsewhwere, it may not score too good on condition 2 if young gay guys fail to find that they or their friends are getting fractures or going demented (the 'crying wolf' phenomenon). Give it 50%.
It scores very poorly on condition 3: there's just a very short 'use a condom' message at the end and no practical guidance on using them, or on any other alternatives (because, as you point out, providing alternatives is seen as dangerous.
Condition 4 is more difficult to evaluate but since it provides no tips on HOW to use condoms, oersuade otehrs to use them, or otherwise negotiate safety and protect yourself, I don't think it's going to leave viewers feeling empowered and confident about avoiding HIV.
So: will it work? Almost certainly not.
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Replies to this comment:
Comment by: Mark S. King (Fort Lauderdale, FL) Fri., Jan. 14, 2011 at 3:10 pm EST
Thanks for this clear-headed analysis of the research, Gus.


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VIDEO BLOG:
My Fabulous Disease


Mark S. King has been an active AIDS activist, writer and community organization leader since the early 1980s in Los Angeles. He has been an outspoken advocate for prevention education and for issues important to those living with HIV.

Diagnosed in 1985, Mark has held positions with the Los Angeles Shanti Foundation, AID Atlanta and AIDS Survival Project, and is an award-winning writer. He continues his volunteer work as an AIDS educator and speaker for conferences and events.

Speaking engagements: Mark King is available to speak to groups. Contact Mark about speaking at your organization or event!


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