On May 5th, we will be celebrating six months of the POZ-TO Monthly Dance Parties. We are proud to say that each month has been getting better and better.

It is so great to see everyone enjoying themselves and socializing. This is exactly what I was going for - a safe space where the HIV+ community can come and just let their hair down. No worries about having to disclose, because the conversation has already been started. And although we open the doors for the POZ Community, we also welcome anyone and everyone who wants to support the organizations we choose to raise money for. 

For the past six months we have raised money for ACT & PWA, but starting in June we have decided that the main organization we are going to be helping is PWA. Mainly because I believe that their services are really hands on and food is important. And with their new garden programs, they are going to need all the help they can get. And POZ-TO is proud to throw our support behind them.

But we will still occasionally invite in other AIDS organizations to help them as well. We are all in this fight together. It is going to take all of us to help in educating and preventing the spread of the virus.

We will also be celebrating a my good friend, Richard Kikot's Birthday. So, I'm sure it's gonna be a fun night. Hope to see you there on Sunday (May 5th).

And to show my appreciation for all of those who have come out to support the event, here is a special megamix I have put together. It's just a taste of all the great music I spin for our party. Give it a listen….you never know what you might hear.

"You are old, Father William," the young man said,
"And your hair has become very white;
And yet you incessantly stand on your head—
Do you think, at your age, it is right?"

"In my youth," Father William replied to his son,
"I feared it might injure the brain;
But now that I'm perfectly sure I have none,
Why, I do it again and again." 

Lewis Carroll, Alice in Wonderland 

I play a computer game called “Fishdom”. It’s a matching game with fish tanks, various things you can purchase for the tanks and a timer. As I get closer to the time allotted for the round, the timer starts to make noises alerting me to the fact that time is running out. 

I realized one day that the more I focused on the timer, the less likely I was to successfully complete the round. I got sloppy and careless, missing opportunities and potential matches. I was worried that I’d be timed out and the round would have to be repeated and I made errors in judgment because of that worry. 

Sometimes I think that we live our lives, as people living with HIV, with a timer ever present in the background of our minds. Somewhere here we’ll find that we’re getting too close to the end of the game and the warning bells will go off letting us know that we’ll be leaving shortly. The timer for us can be measured in years, but it can also be measured in CD4 cells and viral loads, in kidney functioning and liver enzymes. Each one of those indicators can inch us closer and closer to the end. 

It was like that in the old days – people did what I call the “T-Cell death spiral”. They’d blank-facedly announce that they lost another 100 T-cells, or that their T-cells were down to 6 or some other indication that they were dying. It was horrible to experience with people: the disappointment and despair as though they had somehow personally failed. 

Now, the medications are marvellous and we live a lot longer, but the timer is ticking away. We may not give it our full attention, but like a mental grandfather clock we are reminded that we are mortal and that we will die. One day there will be a chime and that will be that. 

Of course, we will die. Everybody dies: it’s inevitable. It’s the dying “before our time” that bothers us. We all prefer to think that we will be old men and women and pass quietly in our sleep. We could just as easily be hit by a car or die in a natural catastrophe, but our dreams are more than likely about old age and quilts and a soft rain outside our bedroom window as we drift back into the vast and expansive no-thing-ness. 

The problem is that like the game, if we spend all our time while we’re here focused on the end of the round, we miss the everyday opportunities that surround us. We miss the potential to connect with lovely people and summer days, with snowmen and with daffodils. And if we focus solely on “winning” the round, collecting as many goodies as we can, we again miss the point of being here. 

The point of being here is being here. 

There’s no other purpose to existence other than to exist. Our existence is nothing less than miraculous, and our connection to everything is nothing less than wonderful. It’s not about earning brownie points for heaven, or collecting things or making scads of money. It’s society tells us those things are valuable. Life is about being in connection with people and the world in which we live: we are here to love, laugh and create; and we are here to weep and to mourn. 

We only have one round (that we know about) to this particular game. Whether we leave at 9 months or 90 years makes no matter. We leave when we are finished. 

And in the meantime, there are birds singing in the trees… 

Recently I was invited to my friend Mike’s birthday celebration. He decided that he wanted to relive his childhood. For him that meant renting a soccer field at the local sports complex. For Soccer? No, for dodge ball. That’s right, dodge ball. 

Imagine, if you will, a soccer field filled with roughly fifteen gay men reliving their junior high gym class nightmares. We rocked out to Taylor Dayne, Michael Jackson, and Madonna and to top it off, some of us took the 80s reference to the max by wearing sweatbands and florescent tights. If you haven’t yet, do yourself a favor and just sit with that image for a minute. Now imagine us being gawked at by group of hard-core South American soccer players who just finished their game. 

As much as I would love to joke about the actual event, because it is kind of ridiculous, I can’t remember the last time I had that much fun! The fun increased doubly when halfway through our game, two new players arrived: Brad and Mark. Both were incredibly handsome, built, and just plain hot. I assumed that they were a couple and did what any adolescent minded person would do: I made them my constant dodge ball targets. What was it that our parent’s always told us? “Those who pick on you, like you the most.”  Soon it seemed that Brad felt the same way. Did they want me to be their Lucky Pierre? Well, either that or he was hired as some sort of dodge ball hit man and I was his only target.  I was so confused. 

After the last balls were thrown we decided to head to a local sports bar to boast about our day, like any good jocks would do. From across the table I heard Mark talking about his boyfriend. So maybe no Lucky Pierre, but there was still the possibility of Brad! Two beers down and as we were falling off our chairs reminiscing about the day, Mike looked at me with wide eyes and mouthed, “Look at your phone!” It felt like I was in study hall all over again when I picked up my phone and there was a text from Mike: “Brad is crushing on you. Hard.” I felt like writing on my napkin, ‘Do you like me? Circle yes or no.’ 

I didn’t even speak to Brad for the duration of our time at bar. Around 5pm and we all decided to disperse and meet up again later at another friend’s birthday party at Bamboo 52 in Hell’s Kitchen.  After much deliberation on what to wear, Mike and I arrived to the second birthday party. Brad finally showed up about an hour later and as if we were back in Junior High Mike said, “Brad, why don’t you sit next to me?” Which landed him right next to me. Unfortunately, the Junior High quality of our interactions did not end there.  All of a sudden, with no more than three words spoken to each other, we were a couple. There was no in-depth conversation.  There was no courtship. There was no copulation. Hell, we hadn’t even played MASH.  But there we were and he would be draped over me for the entire evening.  

At first I didn’t mind it: I actually enjoyed having all this attention being paid to me. Very soon it became quite annoying. I couldn’t go anywhere. I couldn’t talk to anyone else. Before too long I was trying to make eye contact with my other friends hoping they would rescue me. I assume they were trying to be polite and not looking at us afraid they might interrupt. 

As that party ended and we all left for another bar, I decided to make a break for it and head home. I thought at least this way I could finally find some peace. Alas, Brad said, “I have to get up early and I will go with you.” Mike patted me on the back and walked away without seeing the obvious look of distress on my face. 

We hopped on the train home and I made it obvious that I really was exhausted and had an early day, so I was going straight home. The one thing that kept on going through my mind was something that my father said to me when I was a teenager. I didn’t have the best relationship with my father, but god was he right…

‘Be careful what you ask for’.

It’s always heartwarming to watch communities rally together when they have a common health concern.  In the early days, the gay HIV community was a great example of how people were able to join forces in the face of a terrible stigma and even death to ensure strong networks were able to provide support.  It is a model that has been emulated in the breast cancer community, MS, liver and heart disease and many others. 

I was reminded of this recently at the Gathering for people living with HIV across the province, organized by Positive Living Society of BC.  People were relieved to be connected with others... they could chat informally without fearing stigma and there was clearly a sense of camaraderie and common purpose.

Recently, I was thinking of our family vacations to Eyam, Derbyshire where my grandmother used to live.  It’s a beautiful, historic village in the Pennine hills, full of old stone houses and even a hotel on the English haunted inns list, The Miner’s Arms.

Hundreds of years before my grandmother lived there, Eyam had faced terrible stigma and death too.   In August 1665, some cloth was delivered from London to a local tailor.  He hung the damp cloth to dry and it released fleas that were hidden in the material - they were carrying the bubonic plague.  Within one week, the tailor was dead and many in the little village were dying.

Unlike HIV, the bubonic plague was caused by a bacterium and was passed very rapidly by the bite of fleas.. The village decided to isolate itself from surrounding villages and from each other.  The church services were held in a field and a well above the village was used for money to be dropped in the water by the villagers and, in turn, the nearby villages delivered food.  The Riley Graves on another hill lay testament to a mother who buried her husband and six children within 8 days - a sad and horrific tragedy.

However, for some reason when the village finally opened its self-imposed quarantine, a quarter of the villagers had  survived and there is a belief that it was for the same reason that some people seem to have a gene which gives them immunity to HIV (the gene has been found in the descendents of Eyam’s survivors).

The community spirit of that tiny village and their determination to overcome the odds and their own personal fear reminds me very much of the great courage of people with HIV.  Many HIV+ people have not only had to combat the ignorance of others but also decide as a community what steps they will take to network together and fight the disease.

This all leads me to believe when we are sick with a mutual illness, we find a bond and a new reality emerges.  In death, humans reveal powers of endurance and their resilience is at its best.  Alliances are struck and there’s a real sense of connection.  At a time of mutual isolation, there is kinship, respect and love.

Bob Leahy: Thank you for talking to PositiveLite.com, Julio.  The last time we talked was in January 2012 I think.  How have things shifted on the treatment as prevention scene in the last fifteen months.  Are you starting to feel optimistic in terms of what you’d like to see?

Dr. Montaner: Well as you know I have been feeling quite strongly for quite a number of years now that treatment as prevention truly offers an opportunity to fully realize the potential of antiretroviral therapy, first and foremost at the individual level, secondarily to pay a huge dividend when it comes to preventing HIV, TB and a number of other diseases.  For us the challenge was initially to get enough of a data base that the argument could be made compellingly enough so that every level of decision making, from policy makers to community, could rally behind it. In my mind the evidence, particularly when you weigh it against the challenge we are trying to address, was already overwhelming in 2006. Imagine how I feel now!

I think that since HPTN052 came on board that has allowed us to say this is definitive and conclusive evidence, and that we now need to move on to implementation discussions. And in the last eighteen months we have seen a huge political evolution, from Hilary Clinton to President Obama to (UNAIDS) Michel Sidibe progressively increasing the enthusiasm. To me, Michel Sidibe was incredibly valuable in 2010 when he formally endorsed getting to zero through treatment as prevention but I sense that his level of enthusiasm and eagerness today is exponentially greater, which is a great sign.

Bob: But in Canada, how do you feel about this.  Have we made progress at all here in the last fifteen months?

You know British Columbia has been unique in the sense that I have been able to galvanize political support based on the evidence exclusively and the return on investment, if you want to put it that way. The Province has been 100% behind us. Unfortunately I have to say that I have been disappointed that the same attitude has not really panned out across the country. There has been a whole lot of intellectual discourse, and it’s incredibly frustrating, you know, when you show data regarding the evolution of the epidemic in British Columbia and you juxtapose that against what is happening in Manitoba and Saskatchewan, for instance, where HIV rates are continuing to rise - and it begs the question what else can I do to make my point?

I point my finger directly at the federal government. I think it is Stephen Harper’s fault and the health ministers’ fault all the way from Tony Clement to Leona Aglukkaq, and PHAC’s fault too because they are unable to release themselves from their political masters to say “we have a crisis, we know how to address it, let’s do it”. In an area where the only answer I get is "this is a matter for provincial jurisdiction" then that allows for all kinds of anarchy to occur and basically we are left without a national HIV strategy.

So how about your provincial partners?  Have you been able to make headway with them or are they still looking for more data?

Well that`s the problem. We have had very good conversations with individual leaders all across the country but they have not materialized in to an executive order to move forward  and my frustration is that the lack of attention by the federal government to this issue makes it possible for the chaos to continue.

I know CATIE is trying to foster a dialogue by hosting national consultations on this issue and also convening a treatment as prevention-themed conference in September. Do you regard these as positive steps?

In my opinion, anything that will create a forum for this kind of discussion to take place is a very well received opportunity. I am a little bit frustrated about the fact that in the CATIE consultation last year there was lot of discussion but I would have hoped it would be the ideal forum that people would rally around the idea and say we want more, we want better, we want  targeted outcomes – and it didn’t happen.

OK. Let me ask you something else.  In the room today (at the TasP conference) you could get the impression that Canada, instead of being a leader in treatment as prevention as we once seemed to be, may be falling far behind other nations. How would you characterize our position now in the world?

Well you heard today about the progress we have together made with China.  I was instrumental in working with the CDC in China, managing to inform their new policy which came about even before HPTN 052, and we have made phenomenal progress there. I’ve been working with colleagues of mine in Rwanda and their work has been incredible, with plans to expand and with a clear national policy, much like China.  It's absolutely brilliant.  And then there’s New York City and San Francisco and Washington D.C. The list goes on and on.

So how does that make you feel?

Well I think individually I feel incredibly pleased and gratified I have been able to do this in my province and be able to export that to willing parties around the world. But it breaks my heart that I haven’t been able to do the same thing for the rest of my country.

Well, why haven’t the other provinces taken treatment as prevention up? What’s behind all that?

I can tell you what have been the keys to our success as opposed to why there is as yet no similar success elsewhere in Canada. Firstly, for us it has been important to have a focussed program; at the BCCFE we have one item in front of us and it’s HIV. Secondly, we have a very aggressive data generation mechanism; we monitor everything and based on that data we can go to politicians and say "this is the evidence about what is happening in your own backyard and you need to do something about it". Thirdly we are very strong advocates, we work with community and with partners to create the urgency that is needed for politicians to feel not only is this what should be done but has to be done. 

Why is this not happening elsewhere in the country? Well, I think we (nationally) need to get our act together. We need to make this something that the politicians cannot walk away from – and I think the elements . . . when you see the state of the epidemic in the aboriginal community and the MSM community, we need to make this a priority.

OK. Now I have to ask you about the issue of MSM and the fact that your numbers of new infections in B.C. have not declined in that population. Why can’t you get the same results there?

Some have argued that treatment as prevention may not work in MSM.  I think that is absolutely wrong. The biology says it does work, it works on the virus no matter where it is. If it works in injection drug users it will work for everyone else. 

So here’s the situation. Treatment as prevention works in serodiscordant couples.  New infection rates among MSM – older MSM – are coming down. The problem is that the rate in young MSM is going up. Because of stigma and discrimination and all the issues around sexuality they come out poorly equipped to protect themselves. They make choices which put them at risk because the environment is not prepared to welcome them in a supportive manner. So they get infected before we can get to them.

So how do we change that piece?

It’s a very tall order to ask a clinician to change that piece, but I have two answers for you. The first one is that if we offer treatment to everyone we possibly can, we make the world a safer pace for gay youth to come out.  Even if nothing else changes, that will help.  Of course that’s insufficient. The second one is systemic change where we access youth before youth come out. Now you ask how difficult that is in places like Abbotsford or Hope or even Vancouver where talking about sexuality in schools is problematic. Beyond that talking about homosexuality, in some school districts, is impossible. We need to change that, because if we cannot have those conversations early on and show that we are supportive of gay youth even before they identify themselves then we will always be trying to protect them after they have got infected.

OK. I want to ask about the role of people with HIV in advocating for treatment as prevention. I’ve had a feeling that the community is absent, somewhat, from the discussion and that the discussion when it occurs tends to be driven top down, as opposed to from the bottom-up, and bottom-up is the way direction has come from historically. Do you agree that there is an advocacy gap there and that is something we need to look at?

Look Bob, I’ll be very frank with you. In my early career working with HIV  - and I’ve been doing this since the eighties – I was there when the community was against us because they didn’t feel we were doing enough, when we were pushed because we didn’t have the answers, they just weren’t available.  I was there when we finally merged and worked together after 1996 to make treatments available faster, to get the regulatory process changed, to get services to the community. But the community has lost its focus. We’ve moved to solve a lot of the problems you have but the sense of urgency to help us solve the next problem is almost no longer there. All the people in the community have different issues. What is missing is that unifying focus that says “Julio, we want you to work with us to end the epidemic.” So I am a lonely ranger here, trying to push for the end of the epidemic.

Well, personally, you know I’ve changed my mind on treatment as prevention. I’m in favour now. And the argument I’ve found most persuasive is that starting treatment early is undeniably good for us.

The reason I started doing this work is not that I had an eureka moment that treatment could prevent transmission.  It was not my priority. This was about my patients, my number one motivation.

I don’t think everyone understands that. I think some people feel that people like yourself have a public health agenda first and foremost.

No. And that is the number one problem.

OK. One more question and that is about the expansion of testing towards more universal testing. I know some jurisdictions have an issue with expanding testing to what we’ve regarded as low risk groups and the issue they have is a cost-benefit one – the cost doesn’t justify the small number of new infections you are likely to bring to light.  How would you respond to that?

Well I met with the Deputy Minister of Health here and said I wanted to do normalized testing, offering testing for everyone who has ever been sexually active in this province.  He said, “Oh no, Julio, here we go again. We cannot afford it”.  I said “you cannot not afford it.” He said “people are going to reject it, they are going to refuse.” I said “Let’s pilot it. We’ll offer testing to people at no risk, either self-perceived or perceived by their physician, who don’t have any conditions that make you suspect they could be HIV-infected and so when they come  to emergency or admittance at three local hospitals with totally different demographics, we offer them an HIV test." We did 10,000 or so tests and found consistently five per thousand came back with HIV-positive results. My colleagues in Argentina did the same thing in acute care hospitals in Buenos Aires – and five per thousand came back positive. CDC in Atlanta says that if you only get one positive per thousand tests it pays for itself.

So that’s your answer. The return on investment is fabulous because you are doing two things – those people change their behaviours, they recognize that they need care and they render themselves no longer infectious. It’s a no brainer.

Julio, you are very persuasive, I must admit.  Thank you so much for talking to us at PositiveLite.com again and thank you too for welcoming us to Vancouver for a great conference.

My pleasure, Bob 

Photo by Bob Leahy.

Read my conference report here.