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.

In the months leading up to my diagnosis, I experienced a variety of symptoms.

I would wake drenched in sweat, shaking and shivering during the night. I developed a dry cough that did not disappear despite drinking copious amounts of medicine. I felt dizzier with each passing day, and during the month before I was diagnosed, experienced difficulty breathing, and sheer exhaustion. There were many times I had to leave work early, because by noon, I’d literally be crashed out on my desk. My skin looked grey, and I had developed suitcases under my eyes. Work colleagues frequently pointed out my weight loss: ‘You look so thin nowadays, are you on a diet?’ (Umm... no diet, just AIDS).

As my health declined, I visited a number of doctors at my local health centre. I explained the cough, the night shivers & sweats, and the bouts of exhaustion. Stupidly, although I was aware that I was at risk from HIV infection considering my previous behaviour, I knew with absolute certainty that some other reason lay behind my symptoms.

The doctors would tilt their heads to the side, purse their lips and look at me mystified. I’m convinced they thought I was a hypochondriac. None of them ever suggested that it might be HIV, or offered me a test. That suited me fine. My symptoms were explained as ‘stress-related’. I was working a demanding job, in addition to other non-work responsibilities that were weighing down on me. A particularly cuddly doctor informed me that since stress can affect the immune system, it was probable that I was experiencing this. I was told to take it easy, a few days off work, hot baths and some ‘me’ time. ‘Enjoy yourself’.    

Enjoy myself... I did not! Some weeks after my last appointment, I showed up in accident and emergency with chest pains, difficulty breathing, looking like I’d crawled out of a fresh grave. That was when I was given the HIV test. I wasn’t happy about it, but I submitted to it, because deep down I knew that something was not right, and if anything, it would give me peace of mind and allow them to narrow down the ‘real’ culprit.

Only, of course, it turned out that the real culprit was indeed HIV...

The point to this story, is that whilst it is the responsibility of each person to look after their own health – i.e. to get tested for HIV regularly – it is also important for health professionals at all points of care (not only accident and emergency departments) to offer an HIV test. I was at my local health centre on a number of occasions, yet it was never mentioned. I fully acknowledge the part I played in my late diagnosis. But I also feel that if the idea had been explicitly raised for me by one of these doctors, then I would have submitted to the test.

With so much undiagnosed HIV out there, it’s incredibly important to offer tests whenever it is feasible to do so. For example, in the UK, 26% of HIV positive persons are unaware that they have the virus. I was pleased to read a few months ago, that the body that provides guidance for the UK healthcare system – the National Institute for Health and Clinical Excellence – have recommended routine HIV tests in high prevalence areas.

How about we do the same for everywhere? 

With BASHFUL over, my friends and co-workers turned their attention to attending the hearing of Stephen Harper's appeal to the Supreme Court of Canada to end InSite's life-saving work as North America's only supervised injection site. In the afternoon, they would take to Parliament Hill as part of a pro-choice presence during the ‘March For Life‘. Ottawa’s closeted gay Mayor Jim Watson had controversially declared it ‘Respect For Life Day’, and a women’s right to choose a “slippery slope”, and thousands of anti-abortion protesters had flocked to the Hill. A few days later, my friends and co-workers would once again have to rally, this time at the grassroots International AIDS Candlelight Memorial at Minto Park. Guest speakers, performers, activists, and allies gathered to remember those who had been, continue to, or will be, affected by HIV/AIDS in our community.

While I wish I could have been a presence at all three events, fundraisers, social justice advocates, and PHA’s all found themselves spread thin that week as Ottawa played host to even more special events. On May 14th I attended the National Day of Action for Electoral Reform to protest the arbitrary and antiquated nature of Canada’s parliamentary system and demanded an electoral process in which everybody’s vote counts. (Only 40% of Canadians supported the government on our May 2 election, and yet it resulted in a Conservative majority.) M.P.‘s Elizabeth May, and Paul Dewar spoke at the non-partisan event, as did Julien LaMarche of Fair Vote Canada.  

The next morning I took part in the 20th anniversary of the M.S. Walk in Ottawa as a team member of S-Mart. We raised $11,860, largely because of the amazing fundraising done by Team Captain Adam Goldberg. The Walk helps fund research and local programs and services for people living with multiple sclerosis. My thanks to everyone who donated and walked with team S-Mart this year in the rain. Next year, team S-Mart will reclaim its crown as the number one fundraising team in Ottawa for the M.S. Society. Although, this year, we were pleased to be number two.

Throughout the course of our lives each of us has many friends come and go. Some of them are just social friends. Some of them, though, drift into our lives and make a very profound impact on us, change us for the better and then just seem to drift right back out. Some friends become life-long confidants whom we know that no matter what time it is, or what kind of trouble we have gotten ourselves into, they will be there to help pick us up.

Friends come in so many different varieties, from people whom you see on a regular basis to (thanks to the internet ) friends that you have never physically met, but still hold close to your heart. Friends are a fundamental part of our lives in so many ways.

Often, we have one friend that comes into our life that saves us. That someone can chase away the clouds, banish the monster in the closet, make us laugh when we feel like crying, and warm us when we are cold. This one friend is our rock, our kindred spirit.

It just so happens that this one special friend of mine had four legs, a tail, and pooped in a bright blue plastic box in the corner of my kitchen. His name was Bagheera Maximillion Jones, my bestest friend in the whole world. He was my cat.

I met Bagheera in a rescue shelter in Chicago. My husband and I were looking for a playmate for the cat we already had. Bagheera pushed his way through the crowd of about one hundred other cats, using his huge 16lb body to shove all the other cats out of his way. Then he walked right up to Kyle and I and said “Hey you two homos! Get me the hell out of this nuthouse!” It didn't seem like we had a choice in the matter; Bagheera had picked us, and we obeyed. That was August 10, 2007 Bagheera was eleven years old.

Right away we knew that this was no ordinary cat. He was solid black, except for about a nickel-size white spot on his big belly, and he had the most astounding bright green eyes I had ever seen on a cat.

We later found out that he was a black Siamese, a very rare breed. I asked the vet if we should get a life insurance policy on him.

Long story short, Bagheera. named after the black panther in Rudyard Kipling's The Jungle Book, became my partner in crime. We would cavort through the house chasing Miss Chloe, (our other cat). He would pounce on Kyle's stomach while he was relaxing on the couch watching TV, (I wonder if my throwing Baggy's cat nit pouch in his lap had anything to do with that?) In short I was like a five-year old boy with a brand new puppy, except that I was a 32 year-old ex drag queen with a cat, I dunno you do the math!

In September of 2008 when my husband passed away, Bagheera really became my life. He saved me in so many ways. He comforted me when I cried, and he gave me a reason to go on. He depended on me as much as I depended on him; we were all each other had left. And I honestly believe that that crazy cat is the only thing that stopped me from leaping off the back balcony.

Fast forward to May 12, 2011, I get home from grocery shopping and find my Baggy, with his jaw swollen. He was crying. My heart broke. I rushed him to the vet, and my worst nightmare became reality. Bagheera had cancer in his mouth, and he was suffering. It was like looking at my husband dying in that hospital bed all over again.

And so I made the toughest decision of my life for the second time. I couldn't let my baby boy suffer. It was his time.

I took him home that night, gave him extra helpings of his favorite canned food, lots of extra treats, and every ounce of love I had left in my body. I was determined to repay all of the love and joy that he had given me over the last few years in that one night. I did my best. I hope he felt it.

 The next afternoon , I took him to the vet for the last time. They gave him some medicine to make him sleepy, and I held him in my arms and kissed his little black nose over and over again, and whispered in his ear “I love you forever and always, you won't hurt anymore I promise, and as soon as you get there, you run into your Daddy Kyle's arms, he will be waiting for you. I called him last night to let him know you were coming. Now go to sleep buddy boy, I love you.” He went to sleep, I kissed him one last time, and the doctor gave him the injection.

I buried him in my parent’s back yard, right next to the fountain my Dad built, Bagheera loved to play with water.

My house is too quiet now, and it's hard to sleep at night, not hearing him purr on the pillow above my head. His litter box is still in the corner of the kitchen, I'm not sure how long it will stay there, Kyle's toothbrush, after all, is still in the holder in the bathroom.

I know eventually this hurt will heal, and I have had so much love and support from all of my amazing two legged friends and family. Eventually there will another four legged companion for me, but they will be a new friend, not a replacement, Bagheera was a one in a million boy who I will hold my heart forever.

 Thank you for reading.

 XXOO Danny

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.
"

Over the past few years I have lost part of the support team that I had in place or thought I had. And its’ all because of what happened in the internet chat-rooms.

In my days of looking for love in all the wrong places, chat-rooms seemed to be a good place for me to find friends and possibly meet someone to date. It all came to an abrupt halt last year when I had my HIV status plastered all over the chat-room because of a difference of opinion with some individuals who were supposed to be my friends. 

Here’s the background. I would go into the chats and, over time, I managed to get in conversations with some popular people in there. If you’ve never been in chats, there is always a group that pretty much guides the conversations. Everyone else is trying to be their friends. They just seem to know many of the people you want to meet. Soon I was being invited out to the bar or to dinner parties and got to meet a lot of people. I grew to trust a few of them and I revealed my HIV status because they kept asking why I didn’t go with this guy or that guy. I told them I would have to tell my partners and some of them I had told weren’t comfortable with it.

One day there was a conversation going on in the chat-room about gay marriage. I decided to put my two-cents worth in. Keep in mind that a few of these people are legally married gay couples. I made a blanket comment and stated it was my belief, that I wasn’t condemning anyone for what they do. I said that I didn’t think it was right that when someone legally marries that they fool around with others or add them to their bedroom. My belief was that if you love someone and make that decision to marry and take the vows of marriage, you should be true to just that one person. I wasn’t alone in this belief; there were a couple others who agreed with me.

Two of the couples took offence to my comment. They made it all about them, that I was referring to them. In retaliation they proceeded to tell everyone my HIV status. The next time I went into the chat-room, everyone was talking about me and how I should be shot for not having my status in my profile. When they noticed that I had entered the chat-room they started to sling the crap at me. I just sat there and watched, not responding. I couldn’t believe the attitude of these people, it was all so childish. The good people I wanted to hang out with were now a group of hateful people.

I was lucky enough to have had support from a couple of really good people that I still call friends. They spoke up for me saying my status wasn’t anyone’s business and the only time it becomes someone’s business is if I wanted to hook up with anyone.

To this day, I have never been treated as badly as that by anyone. These people were in the same community as I was, the gay community. I had only heard about the stigma you can sometimes experience from others within the community. They showed me what it’s like.

“I will create or I will allow the things in my life” and today, I make better choices in friends and acquaintances.