At 11am last Thursday results of a large scale clinical trial were released from Washington DC which crackled like wildfire through the internet.   Twitter lit up. PositiveLite went to press just minutes later carrying the news that good evidence had finally been produced that ART reduced transmission rates in mixed status heterosexual couples by 96%. This essentially backed the findings of the Swiss Study which, for reasons way too complicated to recite here had been discounted by many.

But here's the thing. There are a number of reasons why this news was not quite the breath of fresh air the MSM (men who have sex with men) community had been looking for. Foremost amongst these was the fact that this news was strictly about heterosexuals, not homosexuals. There are differences – significant differences - in how the two polarities have sex, which likely DO impact the risk of transmission. Add to that a number of reservations which I outlined in the article I’ve referenced earlier and you have a situation where the gay men’s sexual health community saw no need to get too excited.

The issue is that the results of both the Swiss Study and the later, more reliable evidence are not necessarily readily transferable to MSM. Having said that, the question arises that if we HAVE been able to quantify the impact of ART on HIV transmission in straight couples, why in heaven’s name can’t we quantify the same risk factor for MSM?

Here’s what Oriole R. Gutierrez Jr., Deputy Editor, POZ said on that subject on May 12 in the POZ blogs

“This new study is great news for opposite-sex couples.

It's also great news for opponents of HIV criminalization This study guts the assumptions of most criminal laws against the transmission of HIV, which often assume exposure to the virus is always lethal, regardless of the circumstances.

This study provides hope for same-sex male couples, but it does not provide the scientific confirmation so much needed by men who have sex with men. I sincerely hope researchers and funders immediately begin to get those answers.

Having been in relationships with both HIV-positive and HIV-negative men, I am certain that serodiscordant same-sex male couples can be successful at keeping negative partners virus-free with current safer sex methods.

That said, we deserve to know scientifically if the addition of "treatment as prevention" will make current safer sex methods for men who have sex with men that much more successful.

If the answer is yes, it will not only have the obvious effect of preventing HIV transmission, but I believe it will also have an enormous impact on reducing stigma and discrimination. We need to know."

Well said, Mr Gutierrez. For a community which places great reliance on evidence rather than conjecture, we are operating in a vacuum, with insufficient data to either shoot down the latest numbers or alternatively, applaud them as a breakthrough for the MSM community

My gut feel is that the results on research conducted on straights will ultimately be good news for MSM too.

There is, in fact, a good chance that harm reduction just got itself a major new weapon in its arsenal of ways to reduce the risk of HIV transmission in men who have sex with men. Trouble is we can’t prove it.

Positive gay men are an under-researched population at the best of times, and this latest hole in our knowledge is a case in point. Let’s fix that hole now. There is an awful lot at stake, after all.

When I was a poz newbie back in the 90’s, I remember being much impressed by the launching of POZ magazine. A glossy news magazine for HIVers? It seemed very radical. That was in 1994 and of course it’s being going strong ever since.

One of the features of those early editions which fascinated me was its founder Sean Strub publishing his latest lab results in each issue*. The numbers which he was sharing were not good, I remember, and reflected the kind of downward spiral that many of us were experiencing at the time. Again, this sharing seemed a radical act. To this poz newbie, sharing this kind of data was something new to me; going downhill was hereto something of a private thing.  But Sean used each of his lab results as a teachable moment. It seemed a clever thing to do, but brave and courageous too. I’ve admired the guy ever since. (He’s still very much alive and kicking, by the way. Poke around this site and you’ll find a number of video clips with him in them. He looks great.)

All of which brings me to my own recent lab results last week, which made a routine visit somewhat less than routine. Now I think I’ve already confessed in an earlier column that when it comes to tracking my own lab results, we are not talking meticulously prepared graphs. In fact, I used to keep NO records whatsoever. Now I have a tatty piece of paper I’ve scribbled on each quarter since 2007, recording my CD4 and viral load counts. No fancy percentages here, I‘m afraid.

This week I went to the clinic for my usual quarterly check-up with Dr No-Bedside-Manner (to the right, not exactly as illustrated; in fact not even close). Here’s what I wrote afterwards on my tatty little piece of paper: CD4 800. Viral load undetectable.

CD4 800? Now that’s a pretty big leap in the right direction. I was diagnosed way back in 1993 at 240, dipped in the ensuing years to the low 100’s (hello AIDS) and then bounced back to the 400 range after the advent of protease inhibitors. I stayed in that range for some time, kind of giving up on a completely restored immune system but in the last few years my CD4 numbers have steadily climbed, and this week they reached numbers I’d previously have considered stratospheric.  800! Wow!

But here’s the fly in the ointment. I am probably feeling less well, less mobile, less pain-free than I have ever been. The culprit is the peripheral neuropathy  in my feet which, if not quite getting out of hand – I can still walk, although not any distance - is certainly making life difficult these days. (I've mentioned this ailment numerous times in my blog here. PositiveLIte also featured an article on this quite common HIVer’s condition here.

Now, the not-so-perfect patient in me seldom gets in to much of a discussion with my doctor. Dr No-Bedside-Manner has a brilliant mind, it’s clear, and knows his stuff backwards, but he is a man of few words. You have to draw him out. Which I decided to do this week. He was surprisingly forthcoming chatty even. It made me realize that the model of care I’d chosen – essentially putting 100% faith in one’s doctor and not really being part of the decision process – may not be the right one for me after all..

In any event, Dr NBM seemed well up on the latest in the treatment of peripheral neuropathy. In the past we’ve relied on nortriptyline   to relieve the symptoms (chronic hot 'n stingy feelings in one’s extremities, caused by damaged nerve-endings repeatedly firing, a side effect of HIV meds I took years ago) which frankly hasn’t worked. The now chatty Dr NBM, engaged in the topic, told me about Gabapentin, a drug which sometimes works, sometimes doesn’t, around which there had been some controversy as to whether clinical trials results were valid. His take was that it was worth a try. The downside was minimal.

Next, Dr NBM called in the pharmacist,   Now the HIV clinic I go to is a multi-disciplinary one. Doctors there work hand-in-hand with the resident pharmacist, as well as with a social worker, nutritionist and a psychiatrist, if needed. When it works well, it’s a beautiful thing to behold. It worked well with me last week.

Young but knowledgeable pharmacist guy, who gives new meaning to earnest, went through the background and the controversy surrounding Gabapentin (which controversy btw I can’t find much reference to on the internet), which resulted in a joint decision – me, Dr NBM and earnest pharmacist guy - deciding to give it a try. I felt really good about the process.

So I started taking gabapentin this morning. This brings to eight the number of drugs I’m taking – five HIV meds plus three meds which address the side effects of these meds. (For the curious the five HIV meds are norvir, isnetress, truvada, prevista and intelence; the three others I take to control the side effects of these are ramipril, nortriptyline and now gabapentin. Jeez! We're a lonmg way away from one-pill-a-day.  Now I know why I rattle when I walk.)

So that’s my sharing for today. I’ll keep readers posted about what results if any I get from the gabapentin.

Don’t by the way, think that I obsess over this stuff. I don’t. I’m one of those who at least likes to give the impression I’m over HIV, that I’ve negotiated a truce with the virus. I don’t talk about it; it doesn’t talk about me. But the virus hasn’t been playing fair lately. It’s been feeding me good numbers while ratcheting up the symptoms.

Given those circumstances, it seems appropriate to re-evaluate my approach to my own heath care once in a while, to see if the old model of leaving it all up to Dr NBM really makes sense. And I don’t think it does.

Maybe it’s time in fact to get serious – to ditch my little scrappy piece of paper and turn to spreadsheets, like the big boys use. And that’s just a start.

* Post-script.  After writing this post, I contacted Sean Strub of POZ asking if he would comment on why he posted his lab results way back then.  This is what he said . .

"In terms of publishing my labs, it wasn't particularly courageous.  I was publishing everything I was curious about and those mysterious lab reports were at the top of the list.  It was also cheap editorial content and it gave me a lot of free advice from experts!  We consciously sought to find contrary opinions, so the article would have one Dr. saying "Sean needs to do x..." and another Dr. saying "what Sean shouldn't do is x..." to demonstrate how even experts often disagree on the best course of treatment.
"

First, lets talk about coverage of key conferences. Brian, lucky man, has scored a trip to Rome for the 6th IAS Conference on HIV Pathogenesis, Treatment and Prevention (IAS 2011) . He will of course be reporting directly from Rome – I believe he wants to focus on treatment issues, in particular the latest on when the thorny issue of when to start treatment.  

That trip of course makes my plans for the summer look considerably less glamorous. However, there is a fair chance I will be reporting from New Orleans in September from the North American Housing & HIV/AIDS Research Summit. This is dependant, as attendance at many of these affairs is, on being awarded a scholarship. It’s been an unfortunate trend that the availability of scholarships set aside for HIVers has nose-dived over the last little while, but I have high hopes for this one.  

Closer to home, other conferences which I will definitely be reporting from are The Canadian HIV/AIDS Legal Network Symposium  in Toronto next month and the Canadian AIDS Society Forum and AGM  in Ottawa at the end of May. In both cases, I will be a member of panels talking about the use of social media in HIV advocacy. It’s a hot topic right now, so we are in demand.

Changing hats a little, and I do like to wear more than one bonnet, PositiveLite is poised to expand its coverage of Toronto’s lively arts and theatre scene, focussing in particular on shows of interest to a gay and/.or poz audience. PositveLite already has accredited media status with a number of particularly lively theatres who consistently stage good productions. We are also excited to be accredited media for Luminato this summer.  Long-time readers may recall we reviewed several fine shows from Luminato last year including the AIDS-themed Dark Star Requiem and the new Rufus Wainwright opera Diva. This year’s flagship production is 1001 Nights. We will definitely be there to bring you an early review.

In the short term we'lll be going back to Buddies in Bad Times, which brings top notch queer theatre to Toronto regularly, to see the very promising queer multi-media show Tightrope. We’ll be there opening night May 26 and reviewing it right away so that, as always, our review will be among the first to appear in the Toronto media, a characteristic which has garnered some previous reviews we’ve done incredibly large numbers of hits.

One more treat: Paul Gallegos, the stand-out-in-the-sun Calfiornian AIDS activist we've featured in two extremely well-read interiews already, will be talking to us again, this time about his experiences living in a sero-discordant couple.

So, all in all, it looks like it will be an exciting summer. Definitely stay tuned, won't you?

In this first batch of reviews - there’s more to come – of apps for gay guys, I’m avoiding the wealth of dating and hook-up apps out there. That perhaps omits the most popular gay apps available but - well, I don’t do dating or hook-ups anymore. But there are plenty more apps aimed at the gay market that are available at Apple’s iTunes store. If you want to learn more, go there and search “gay.”

In any event, here are three apps that caught my eye, which turned out to be a mixed bunch indeed. 

HOW GAY ARE YOU?

Price $0.99

Platform: iPhone, iPad, iPod touch

The come-on: "How gay are you? This Quiz will let you know.   The series of questions will determine if you're a fashionista, Queen Diva or Gun Tottin' (sic) heavy-metal loving mega hetero."

The review: we're talking fluff here, not science.  It’s a quiz, a series of questions to determine how you fit the stereotypes. Oddly you have just ten seconds to ponder each question. Don’t answer in time and you lose points – which is so NOT gay. Being late to the party is VERY gay in real life, so why LOSE points for it here. In any events, here are some sample questions:.

Sample question: Fuscia (sic) is

A A lovely pink flower

B French for the F Word

C OMG! The best colour EVER!

D Who cares?

OK. These guys can’t spell, but if that were the only problem with this app, it would get a higher rating. Your point score decides your position on the gay scale from straight as an arrow 0 to a positively flaming 2800 points. I answered all the questions as honestly as possible and ended up somewhere in the mid range. Exactly WHERE the app pegged me is difficult to determine, because I ciould not go back to check. The bizarre thing about this ad is that it only plays once, or at least the function to restart it and play again doesn’t work, so rechecking your score, or trying it on your friends, is not an option. (The support function takes you to a dead link.)

Bottom Line: 1/10 An annoying rip-off.  Do not buy at any price. 

GAY CITIES: YOUR GAY CITY GUIDE

Platform:  iPhone, iPad, iPodTouch

Price FREE

The come-on: "Where does your crowd go? Find nearby bars, great restaurants, shops (and more), see who's there and share where you are going with your friends."

The review. Now this is better. This is actually quite an impressive app and if you are a traveller who doesn’t want to tote books like a Bob Damron or Spartacus guide in your suitcase, this is the next best thing, or maybe even better. It covers over 190 cities, and if you have GPS turned on, will tell you what’s gay in your immediate vicinity. (Living in the back of beyond, Gay Cities came up with zip for me, but helpfully listed a whole bunch of Toronto hot spots if I cared to jump in the car and head west a hundred miles or so.)

Using Toronto as an example, that list seems quite comprehensive. You’ll find your baths and bars there, with a good sampling of reviews, which is handy, but also hotels and restaurants, many straight, plus organizations like CATIE. It’s an odd mix which becomes less unwieldy when you realize you can sort by category as opposed to the default of distance from where you are now. A useful feature is the ability to search by neighbourhood. There are maps too. You can also register where you currently are, so that others can presumably beam in on you a la Grindr.

This is actually an impressive little app, nice looking and full of function. It’s really quite a cool thing for the gay traveller to have so much information about any given city at his fingertips, so it will not only help you find your way, but impress the hell out of your friends too.

Bottom Line Line: 9/10. An impressive demonstration of why carrying an iPhone pays off.

GAY KAMA SUTRA SEX POSITIONS

Platform: IPhone iPad

Price: a whopping $9.99

The come-on: "Gay Kamasutra (OK make up your mind, which is it? Kama Sutra or Karmasutra?) is a perfect Kamasutra with professional illustrations for homosexual men. Start training right now.  You must be at least seventeen years old to download this application."

The review: Training? Is this for the sex olympics or what? As it was listed at $9.99 and the PositiveLite budget is miniscule, I did not download this one. Instead I relied on what the solitary user review said about it: “Waste of money. This is perhaps the biggest waste of money I have had on applications on iPad. There is nothing "gay" about it, they use the pronouns he and she. The figures are diagrams, not drawings of real people. Save your money and skip this one.”

Bottom line: 0/10 Buyer beware. Looks like you are paying ten bucks (yes TEN BUCKS) for a bunch of stick figures. There are many scams on the internet and this looks a lot like one of them.

I've been around for quite a long time.

I started volunteering in 1994, six months after I was diagnosed, about the same time as going on disability with a falling CD4 count, an uncertain future and few options. Seventeen years later I’m still at it. I’ve actually tried to “retire” once or twice but it hasn’t worked out, and right now I’m probably busier than ever.

I sometimes think about why do people volunteer? You’ll hear a variety of explanations centred on themes which ultimately are about altruism, aka trying to make the world a better place. But I’m convinced that many people, and I confess to being one, do it for themselves, do it because it feels good. It makes them/me feel more worthy, more needed, more complete. So in a sense, if you accept my hypotheses, volunteerism, for some of us, is selfish. Which sounds kind of callous, except that putting ourselves first, actively promoting our OWN self-care first, is just as noble an endeavour, I’d argue, as seeing our emotional and physical health secondary to that of others we struggle to assist

If that sounds cynical, I suppose you could make the same argument about charitable donations. Is our motivation to help others or to make ourselves feel good? Whatever, everybody benefits.

So here’s the thing. After many years of both good and bad experiences I’ve rationalized that the volunteerism I choose to engage in – and I’m choosy nowadays - must feel good for me. It must be enjoyable, it must be drama free and it must NEVER stress me out. If any of those criteria are not met, I’ve learned to move on. It’s probably the best lesson I’ve ever learned.

The flip side of this is that everybody wins. Tasks that you enjoy doing wholeheartedly are done better than those you hate or resent doing. It’s that simple.

Let me give you some examples. I’ve served on a variety of boards, chaired one at the local level, sat on the executive of two at the provincial and federal levels. Did I enjoy them? Meh! Even though I have the right skill set – I have a governance/finance background after all - stress and drama can and do raise their ugly heads through no fault of your own. And stress and drama I don’t do well. Thankfully, I’ve developed a keen sense of when it’s time for me to move on.

If I look at the volunteer roles I’ve undertaken over the last seventeen years, you’d probably be surprised at the ones I’ve found to be most rewarding. High on the list would be my very first volunteer stint. I was behind the front desk at ACT (the AIDS Committee of Toronto) , a receptionist who loved what he did. It was so different from what I had been doing in my “real” career and it gave me great personal satisfaction to be able to interact with and help people living with HIV. In other words, it felt very, very good.

You’d have to fast forward fifteen years to find something that fulfilling. 2009 found me as an on-line spokesperson for Ontario’s HIVStigma.com HIV prevention campaign. (My colleague Brian Finch was also featured in the same campaign – it’s how we got to know each other). It really was an amazing experience - super-challenging, but really rewarding, an assignment which combined my passion for working with social media and an interest in HIV social justice issues. In simple terms, it felt really, really good.

Fast forward another couple of years and you find me on PositiveLite, working with the other bloggers to bring you what you see today. Again, it works for me because it’s a combination of things I like doing anyway. Brian Finch is 100% stress free to work with too.

Sometimes I feel like I’m doing my best work ever here. For instance I felt really good about the two humbling interviews I did with Paul Gallegos – the amazing poz activist from California who is @Pauly1999 on Twitter. (You can read those interviews here and here if you haven’t done so already. I’m as proud of them as I was proud of Paul for his advocacy work.)

Should I feel guilty that all the volunteer assignments I’ve mentioned here made me feel good? I don’t think so.

Last night I travelled to Peterborough, to PARN, the local AIDS Service Organization that I’ve been connected with - sometimes loosely, sometimes not - ever since my partner and I moved away from Toronto in 1996. I presented to new volunteers there, helping with their orientation training, and speaking about my experiences as a person living with HIV. It’s not nearly the first time I’ve done this – it’ been something I’ve done off and on for years – and again, it’s something I enjoy. Simply put, it makes me feel good. And that, I maintain is entirely what volunteerism can be all about. Is the experience diminished by those with that motive? I‘d like to think not.

If you volunteer in AIDS work, it’s very helpful, to think – to think hard – about what YOU want out of it. The best volunteer work is that which gives YOU the most satisfaction while being of most benefit to others. There is plenty of that kind of work out there, but to find it means having a clear set of objectives, not to mention a list of places you DON’T want to go. At least that’s my take on it.

What’s yours?