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The Latest Features and Interviews Stories

  • Unlimited intimacy
  • Talking treatment as prevention with Julio Montaner
  • 30 years of ACT: A conversation with Hazelle Palmer
  • In the beginning
  • HIV in Toronto’s African, Caribbean and Black communities

Features and Interviews

Nov26

Toronto PWA: 25 years of service

Monday, 26 November 2012 Written by // John McCullagh - Publisher Categories // Activism, Community Events, Events, Features and Interviews, Living with HIV, John McCullagh

In a video interview with PositiveLite.com, Toronto PWA executive director Murray Jose reflects on his agency’s 25 years of serving people living with HIV.

Toronto PWA: 25 years of service

In 1987, a support group of people living with HIV formed the Toronto People with AIDS Foundation (Toronto PWA).  

Although a great deal has changed over the past two-and-a-half decades, Toronto PWA has adapted as different needs have emerged. At its heart though, the agency is all about serving the community, struggling against HIV/AIDS and creating possibilities for people living with the virus. 

In his video interview with me below, executive director Murray Jose reflects on the growth and influence the organization has had and speaks about the challenges that still lie ahead. 

Nov23

Show Me The Love Part Three

Friday, 23 November 2012 Written by // Megan DePutter - Life Categories // Features and Interviews, Health, Research, Sexual Health, Living with HIV, Sex and Sexuality , Megan DePutter

In the third part of a series about community-based research probing barriers to intimacy in people living with HIV, Megan DePutter features interviews from two research participants – Advisory Committee member Iris and Peer Research Assistant Tim.

Show Me The Love Part Three

In Show Me the Love Part Two, I wrote about the experience of conducting community-based research for the first time, and what it meant for us at ACG to build capacity in our agency.

But enough about what I think. In the videos* below, you’ll hear some different perspectives - one from an HIV positive Advisory Committee member (Iris), and one from our Peer Research Assistant (Tim).  In these clips, Iris and Tim answered questions about their thoughts and experiences with the research project. 

While watching these videos, I noticed a few interesting things. One was that Tim describes the interviews as an opportunity for research participants to give meaning to traumatic life events that are essentially without meaning or purpose. While working in Positive Prevention, I took notice of how people give meaning to traumatic life events by using what they’ve learned to help others. I think this desire is very strong and can be an important part of resiliency in difficult life situations. I had not considered how being a research participant could contribute to this, but hearing Tim express it this way was quite profound. Research participants in a community-based research study are using their voices and experiences – and quite honestly, dredging up painful moments from the past – to help mobilize efforts to help other people dealing with similar situations.

Tim also spoke about how community-based research is different from other kinds of research – for example by its immediacy, its ability to put findings into action in a more timely manner – and the fact that knowledge translation and exchange helps to disseminate the findings to be accessed and utilized by anyone, including PHAs. For us, this included a “Dinner & Discussion” night at Babel Fish Bistro in Guelph, strictly given for ACG clients and research participants.  It was a great opportunity to share the findings, and I also spent some time explaining research terms for people who may not have had past exposure to research lingo.

In the video clip with Iris, we asked about the impact that “Social Hour” has had. Watch her face light up when she expresses how much she loves her social hour! To me, this expresses just how much impact a simple change can have. A scheduled appointment to sit down, have a sandwich and coffee, and chat. For the participants of this drop-in, these weekly meetings have clearly led to building supportive networks, laughter, and friendship. What can be more important than that?

I’d like to end by noting that this is really the beginning, not the end. We undertook this research to better understand the problem. Mission accomplished. But what we also wanted to know what programs or services could help address this problem. This is less clear. We have made a few changes already, and taken steps to address key issues, but addressing big problems like fear of transmission, internalized stigma, or the lack of a strong gay community in Guelph are complex and will take time. At the Dinner & Discussion, one participant asked: “how will this help me as an HIV+, older gay man who’s looking for sexual intimacy?” Good question. Well, like I said – this is the beginning. It is my hope that we can collaborate more, bring this discussion wider - between PHAs and service providers - to develop further solutions and creative program design that can help us address these barriers.

Thank you to Iris, Tim, and all those who participated in the research!

*Many thanks to Guy McLoughlin for doing the filming and editing.

Nov22

Real Life Impact

Thursday, 22 November 2012 Written by // Bob Leahy - Editor Categories // OHTN OHTN/PositiveLite.com, As Prevention , Conferences, Gay Men, Features and Interviews, Health, Research, Treatment, Opinion Pieces, Population Specific , Bob Leahy

Bob Leahy with a wrap-up report from the OHTN Research Conference – the thrills, the chills and the spills - from an event that promised “Research with Real Life Impact” and delivered.

Real Life Impact

It’s been ten days now, enough time perhaps to process two solidly packed and incredibly busy days in Toronto at the Ontario HIV Treatment Network (OHTN) Research Conference.  But perhaps not enough time. I’m still thinking through some of what I heard, still weighing competing voices, still distilling in my head what I heard.  All of which suggests, I think, the real value and – yes – real life impact of events such as this. 

True, the level of our engagement was particularly high this year, attending as we do with our PositiveLite.com hats firmly on our heads. It was, in fact, a bit of a whirlwind. We filmed three interviews (more on that later), moderated a challenge panel on smoking cessation, manned  the PositiveLite.com booth (a first for us) in our spare time and networked madly. And of course we introduced The Smoking Project  to the world, with a series of posters (below right) designed by poz graphic artist Raymond Helkio  our opening salvo. Add in all the usual sessions and it was – well – a tiring two days.

But by any measure it was a success.  From the conference website:  “Over 625 people registered to attend RC 2012 - Research with Real-Life Impact - and the event was a resounding success. We heard from some of the most distinguished researchers in the field from across Canada, the United States, Britain, New Zealand and Australia. We were also privileged to have people living with HIV - leaders in our work - moderating many of our sessions.”

It's hard to single out or even synthesize what went down at the conference in total, so I’m going to zero in instead on the plenary session that made the most significant and lasting impact to this particpant. It happened, in fact, to kick off Day Two and it was entitled “Is Treatment Enough Prevention?” That question, of course, represents the crux of a debate, arguably overdue at least in Ontario, crucial to the success of how we fight the epidemic here.

There is a lot of back story to this session that those familiar with the treatment as prevention story will know.  But if not, you really need to be aware of just three ongoing storylines.  First, the success of HPTN 052, secondly the enthusiastic adoption of treatment as prevention strategies by early adopters such as B.C.'s Dr Julio Montaner  with widely reported favourable results and thirdly the explosion of “Getting to Zero” sentiments exemplified by Hilary  Clinton’s address at this summer’s International AIDS Conference in Washington and gatherings that followed.  In short, many have been hailing treatment as prevention as the holy grail, THE way to end the epidemic. But is it that simple? The title to this panel discussion suggested not.

Certainly Canadian researcher Dr Barry Adam was quick to suggest that the tone of the debate had perhaps changed since Washington, particularly in light of  hard facts that suggest, even in BC where new infections are down overall (and he suggested reasons for that unrelated to treatment as prevention, such as Insite)  the gay men’s epidemic seems to be impervious. Further he sounded the alarm that “risk compensation”,  the changes that have been seen to occur in risk behaviour as a result of treatment optimism, represents the unwanted fallout of the discourse on treatment as prevention. He cited data, for instance, that suggested that unprotected anal intercourse (UAI) is higher in individuals that have heard of the Swiss Statement. And he suggested that treatment as prevention by itself won’t cut it.  “Biomedical solutions are not enough” he said.

That theme “treatment is not enough prevention” was echoed by Atlanta epidemiologist Patrick Sullivan. Talking about the continuing high rates of new infections in gay/bi men, Patrick pointed out that this population was underserviced and under-researched, but he was able to suggest additional reasons why the gay/bi men’s epidemic rages on.  Rejecting simple behavioural causes, he suggested we need to look at factors unique to gay/bi men – the biological factors surrounding anal sex, sex role versatility, multiple variants of the HIV strain in the gay/bi population and high numbers of casual sex partners. He said the problem can be cracked with existing technologies, but only in combination  -  treatment as prevention, PrEP and condom promotion in particular.

Susan Klippax from Australia also echoed the "treatment as prevention is not enough theme", also pointing to reasons why it is not working in gay/bi men in her country, and also fingering perceptions surrounding the efficacy of treatment  as a major factor  in the rising incidence of HIV infections in gay/bi men in Australia.

Canadian clinican/researcher Rupert Kaul added to the debate by providing the kind of reasoned technical expertise on HIV transmission that we explored with him in his interview with PositiveLite.com here. And Tony Hughes from New Zealand  rounded out the debate with solutions similar to what we had already heard – actively promoting condom use and regular testing, facilitating early treatment and implementing vaccination programs for STI’s.

Given the international nature of this panel, it would be hard to argue that these arguments represented a purely Ontario response to the tide of optimism emanating from, say, B.C. and Washington.  It does certainly seem that there is sober second thought going on. An alternate view is that opponents (or at least doubters) of treatment as prevention, and they are legion, have been girding up for battle. Certainly, the science, and the epidemiology in particular, is developing, so I think a balanced perspective may simply be that the verdict is still out.

One can’t help but applaud, though,  the critical eye we are seeing  applied to treatment as prevention though sessions like this. I certainly liked that  every speaker identified treatment as prevention as ONE of the techniques we can use to stem the epidemic, right up there with condom use et al. That’s good.  Let’s hope that the current uncertainties don’t delay implementation of this critical strategy unduly, when it is clearly urgently needed  – to be used in combination with other strategies, of course.

I’d go further and suggest we need to hold  our community accountable for how readily they seize this new tool, warts and all, because clearly it has promise, all panelists agreed, although none thought of treatment as prevention a  slam dunk. And particularly not a slam dunk when gay/bi men are concerned.  All in all, it was a superbly challenging (in the best way) discussion which will surely have lasting impact on the thoughts and actions of all those present.

Incidentally, you can view this session online here.

******

I wanted to wrap up with two thoughts. First our coverage of the conference is not over.  I mentioned earlier that we filmed three video interviews.  (Thanks, videographer Guy McLoughlin,  for your help with these.)  I talked with Patrick Sullivan about the challenges of HIV prevention in gay/bi men. My colleague John McCullagh interviewed Lisa Power about Aging with HIV and will later be interviewing Sean Rourke about brain health. Look for those interviews over the coming weeks.

Secondly there are some acknowledgements I need to make. I hate singling out anybody, because the entire OHTN team is a pleasure to work with.  But I’ll name three.  Sean Rourke of course, for his leadership, vision and support. Jason Helbig who is our main PositiveLite.com/OHTN liaison and helps us in ways too numerous to mention.  And Jean Bacon who organized the conference program so expertly, including amazing work on the panel I moderated for the Smoking Project. Thank you to all!

Nov16

The Steven Boone Case: Witness for the Defence

Friday, 16 November 2012 Written by // Bob Leahy - Editor Categories // Gay Men, Current Affairs, Features and Interviews, Legal, Living with HIV, Population Specific , Bob Leahy

Bob Leahy interviews Dr Mark Tyndall, witness for the defence in the case of Steven Boone, found guilty of attempted murder of 3 men, 3 counts of aggravated sexual assault and three counts of administering a noxious substance (i.e. his semen).

The Steven Boone Case: Witness for the Defence

In this controversial case, Boone was acquitted of oral sex charges.  Other charges are pending. Read our previous coverage of the Steven Boone case here which includes an interview with Boone himself.

Dr Mark Tyndall (below right) is head of infectious diseases  at the University of Ottawa. He was extensively quoted in this article  Boone trial major setback for HIV prevention, expert says from the Ottawa Citizen.

Bob Leahy: Hi Mark I wanted to ask you about the Steven Boone case in particular and then  ask you about its impact on HIV criminalization issues. I’m wondering first how comfortable are you talking about that particular case in terms of how you became to be involved in it, and how you became to be a witness for the defence.

Mark Tyndall:  Sure. I’ve been approached for a number of these non-disclosure cases and I feel it’s so important to HIV prevention that I’m quite keen to participate in the dialogue. One of the ways I can do that is to help the defence with their report writing focusing on estimates of HIV transmission risk. In the Steven Boone case I was asked to actually testify.

Let’s talk about that.  Tell me about that nature of the evidence you presented.

Well, by the time I got involved it was all over the papers, so I had already read something of the background of the case, but basically what I was asked by the defence was to write a report around the different sexual encounters of the people that had brought charges against Steven Boone and to comment on the risk of HIV transmission associated with these encounters.

So you presented expert evidence on the risk of various sexual acts?

Right.  And actually in this case the prosecution had already asked their expert witness to give their estimates and and I was asked to specifically comment on those estimations.

Now it looks from the press that you were given a pretty rough time by the prosecution?

She was fairly aggressive with her questioning.  I thought I’d be there for ten minutes – it was pretty straightforward what I thought I had to do – but I was on the stand for about two and a half hours and she was really trying to get me to say that there was a risk for HIV transmission through oral sex.  Really most of the conversation was trying to get me to say that the risk was not zero - and I had to say it probably wasn’t zero, but as close to zero as one can get

Now did you have interaction with Steven Boone at all during this process, or not?

Not at all.  In this courtroom setting, he was standing in the middle of the courtroom behind glass.  I could see who he was but I didn’t have any interaction with him.

And do you have any impressions of his demeanour and how he was behaving?

He seemed to be quite engaged in what was going on but he just looked kind of scared and didn’t seem to change his expression that much.

So did you have many discussions with his defence attorney in the course of this process?

We met on two or three occasions and had some correspondence through email.

How did you feel about the fact that you were the only defence witness in this case?

I didn’t really know that.  I knew my role as the expert witness was to comment about the risk of HIV transmission, and this was the same role I’ve had in the other non-disclosure cases I’ve been involved with.

You’ve been involved in other cases as a witness for the defence?

I’ve been prepped to go on the witness stand two or three other times and at the last minute the cases were settled or the defence decided that I didn’t need to appear in court. So this was my first time going to court but I’ve written several reports that have been used in other cases.

And how was the experience?

It was a bit nerve-wracking because I was sitting down in the witness box and she was standing in front of me all dressed up.  There is a real power differential  that I didn’t expect.   I just kept reminding myself that I’m the expert here and she’s not the expert in HIV

I want to talk now about the verdict.  What’s your reaction to the verdict?

Well the actual verdict, by the time it came out, the defence had already said that the unprotected anal sex was already non-contested.  My role in court was to argue around the oral sex encounters. He was acquitted of those charges, so the defence argument was successful on that issue. I think three of the six charges in the Ottawa area were around oral sex.  I did not think the risk from oral sex should warrant the charges.

And they accepted your defence.

I just tried to make the case that after all these years oral sex has not really been identified as a risk factor for HIV transmission.  There are several case reports that seem to be convincing, but after 50 million infections worldwide I don’t think oral sex plays much of a role.

So in relation to the guilty verdicts, and moving on to the impact of the case, what message do you think this sends to our community.  I think you’ve since spoken up in the press about how unhelpful this is.

Certainly from a public health perspective this is extremely unhelpful.  I’m really not sure if the community  - the gay men’s community or the HIV-positive community - really understand all the implications of this either.  From my perspective - a public health person who deals with HIV - I think it sends a lot of damaging and unintended messages.

Expand on that. Do you want to give your perspective on why criminalization is not helpful to public health or to people living with HIV in general?

Well I think sometimes it gets turned around that by opposing criminalization we somehow don’t think people should disclose – and that is totally opposite to what is intended. The reason that criminalization is detrimental is because it will discourage people from disclosing.  For example, I think people would be more likely to get anonymous testing if they are going to get tested.  And although it’s going to be hard to track, I really think a lot of people would think twice before they got tested in the first place. We are actively promoting testing and treating.  We want people to be tested and if they are positive they should get on life-saving treatment.  Criminalization sends the exact opposite message.

So from a public health perspective, criminalization sends a counter-productive message?

If people really understood the implications of criminalization, that every sexual encounter you’ve ever had is under the microscope and you’re at risk of somebody coming up with a non-disclosure complaint, well it’s one of the biggest threats we have to HIV prevention.

I want to move on to the community’s response to this.  I haven’t seen a lot of reaction to this verdict.  I know the AIDS Committee of Ottawa was quick of the mark and the HIV/AIDS Legal provided a comment.  David Hoe too, Jay Koornstra and a handful of other individuals.  But not much else.  I know it’s a complicated case that some may think is unsympathetic. Does this concern you though that we haven’t really come out against this verdict?

Oh yes, it’s been very quiet.  I think that the research that Barry Adam presented shows that many people that are HIV-positive support criminalization so from an individual perspective people feel that people should disclose – and that’s exactly what the public health approach should be. It’s really about creating an environment where that’s most likely to happen - and criminalization does exactly the opposite. So I think it’s quite reasonable from a community perspective that everyone who is HIV positive should be encouraged to disclose. That’s what we want to do. Un-stigmatize it. You should be quite open to disclosing your status and I think we are all working towards a place where that occurs.  Unfortunately, criminalization increases the likelihood that people will NOT disclose.

Maybe this is a case then that we are adding ethical considerations to the mix.  Typically we frame our arguments  in a legal framework and this case causes us to think more than about when criminalization is wrong and what’s entered the picture here is some ethical processing of the verdict?

Oh yes.  Really it goes beyond that to stigmatize HIV, to treat it like leprosy. It is like HIV just  appeared and we are afraid to death of it and the only response that we can come up with is to criminalize people who are spreading it.  But we are thirty years into the epidemic and we know so much about effective prevention and that’s what we should be focussing on  - and criminalization takes us back thirty years . 

So talking about going back, would you agree that the recent Supreme Court ruling was a step backwards?

Yes, at least before there was some hope where one could argue that condoms OR undetectable viral load reduced the risk to become non-significant.  But now they’ve laid it out where the only defence is that the HIV positive person will have to be undetectable on treatment AND use condoms.

Getting back to the community reaction to this case, would you like to see more advocacy around this case?

I think it’s a bit of a two–edged sword.  This is definitely an important issue and we need to be out in front of it and ensure that people are informed.   Having said that, the publicity surrounding these cases creates alarm and stigma directed at HIV positive people.  Of the top five issues in HIV prevention in Canada  - this is one of them, and if the community has nothing to say about it, well that’s just not good.

This is a complicated case.  But my own sense is that silence is not helpful.  Would you agree?

Definitely.  To date it has been the criminal justice system, driving what should be the public health agenda in HIV and to me, they are the wrong people.   The HIV community and Public Health should be setting the agenda, not the criminal justice system.

I think that’s a great place to end.  Mark, thank you so much for talking to us.

Nov12

The Smoking Project with Sean Rourke

Monday, 12 November 2012 Written by // Bob Leahy - Editor Categories // OHTN OHTN/PositiveLite.com, Features and Interviews, Health, Smoking Cessation , Living with HIV, Opinion Pieces, Bob Leahy, Ontario HIV Treatment Network

Today marks the unveiling of an important collaboration between ourselves and the OHTN designed to bridge research and action, to improve the health and well-being of people living with HIV who smoke. Here Bob Leahy interviews OHTN head Sean Rourke.

The Smoking Project with Sean Rourke

Many people will know Dr. Sean Rourke, Scientific and Executive Director of the Ontario HIV Treatment Network (OHTN). He’s approachable, eloquent and clearly highly committed. You’ll get a sense of all that in the video which follows where he talks about The Smoking Project.

I don’t want to paraphrase what he says, but one of the frustrations of anyone involved in the research field must be the historic difficulty of turning research in to practice. “I think the OHTN’s role is to provide the evidence to make healthy choices” he says in the interview below, “not just to look at the problem but the solution.”

In the interview you’ll see that the OHTN, in collaboration with PositiveLite.com, is taking that evidence-based approach to health promotion one step further with The Smoking  Project, announced today at the OHTN Research Conference.  It comes from the recognition that people living with HIV have much higher smoking rates than in the general population, often for good reason, but the impact on PHA health, longevity and quality of life needs to be addressed. That's a wellness issue whose solution will, I think, comfortably fit in to the variety of other solutions to help people living with HIV live healthier and longer that we already provide.  And an important one too. Many experts would say, in fact, that stopping smoking is the best thing someone living with HIV can do for their health, bar none.

So far, things like smoking cessation programs have not been widely offered or  even referrals made, by organizations that serve people living with HIV, or to any great extent, by their doctors. The Smoking Project wants to change that, while coming from a place that recognizes that people living with HIV need solutions tailored to their history and their circumstances. That often includes  support.

We here at PositievLite.com have aired more than a few articles on the issue of smoking and HIV in the last few months.  We’re not anti-smoking zealots. Rather we recognized, after carefully reviewing the research, including the OHTN’s, that there is an unmet need here.  So we decided some time ago  to put a  spotlight on an issue that hasn’t hereto been given the attention it deserves

But more than just highlighting the issue, we are delighted to be teaming up with the OHTN on this joint initiative. You’ll see both our logos on project material, and both Sean and I will be playing an active part in the project’s leadership.

That we are partners with the OHTN  on this initiative marks, of course, a significant step in PositiveLite.com’s evolution, which makes us both happy and proud. Like the OHTN we are not just interested in identifying what are the unmet needs in the community we are so much part of, we want to be part of the solution too.

In any event, why talk more?  As I said at the beginning, Sean is an eloquent speaker. I’ll let him tell you about The Smoking Project.

Nov11

Welcome to the OHTN Research Conference

Sunday, 11 November 2012 Written by // Bob Leahy - Editor Categories // OHTN OHTN/PositiveLite.com, Conferences, Events, Features and Interviews, Research, Health, Living with HIV, Bob Leahy

PositiveLite.com will be all over the OHTN Research Conference this week in Toronto. Bob Leahy says why it’s an important one for people living with HIV and the HIV community in general - and what’s on the agenda.

Welcome to the OHTN Research Conference

We’re here at the 2012 Ontario HIV Treatment Network (OHTN) Research Conference  in beautiful downtown  Toronto with 600 or so researchers, frontline workers, activists, funders, assorted community members and – particularly – people living with HIV.  I say “particularly” because essentially this is all about us, so why wouldn’t we be here?

Many of us people living with HIV don’t get out much, don’t have many chances to mingle with and learn from other people living with HIV from across the Province, so the conference fulfils a networking need as well as a learning one.

Not that I want to underplay what can be learned here. The theme this year is “Research with Impact.”  In the words of the conference website, the proceedings “will focus on research that has had tangible outcomes and impacts on the lives of people living with HIV, as well as the need for more impact-focused research.”  I like that.

Program highlights include sessions on the race for a cure, the nature of the epidemic in men who have sex with men and what to do about it, the future of treatment as prevention, and HIV and brain health. It’s a very full program indeed, presented in a form deliberately accessible and intelligible to those of us whose background has never involved a university, let alone a research laboratory,  in our lives.

You know, if I am an enthusiast now, time was when I was young and naive and thought conferences  like this weren’t about me, they were about science and test tubes and microbes and unintelligible talk.  So I tuned out and stayed away.  I’m not sure how and when I wizened up, but at some point I saw the light.  So did the OHTN.  Their conferences are as accessible as all get out, and if you want to know what’s going on in the world of HIV, particularly in Canada, from leading researchers talking your language, pretty well indispensable.

This year is a big one for PositiveLite.com. We have a booth at conference floor level this year, showing off our new banners, our website and we’ll be saying hi to all and sundry. Myself, publisher John McCullagh and contributor/peer research assistant Wayne Bristow will be glad to shake your hand. Contrubutor Megan DePutter will be there too. Our promotional material will be in all delegates' bags as well.

On the programming front, OHTN  Scientific and Executive Director Sean Rourke will be announcing a major initiative in which PositiveLite.com will be partnering with the OHTN.  It’s called The Smoking Project.  This is major for us; more on this later.  But connected with that, I will be moderating a "challenge panel" dealing with Smoking and HIV that I’m very excited about.  Also John and I will be interviewing a number of conference speakers on video for publication later on PositievLite.com.  So there is a lot going on for us.

For those unable to be at the conference, don’t give up as all plenary sessions will be presented live via webcast, so you can watch at home or at the office. You'll even be able to interact by posting questions to the plenary speakers directly from your computer.

(The first step is to do a system test to ensure that your computer has all the components necessary. After that, all you have to do is check the plenary schedule on our Program at a Glance  and connect to the online session, available five minutes before the scheduled start time.)

You can also follow along on Twitter @theohtn  or like the OHTN on Facebook to stay updated. The official Twitter hashtag for the conference is #RC2012.

Good to be here!

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