I know we’re supposed to be obsessed with the private lives of A to D-list entertainment icons but I’m not sure HIV-positive, celebrity role models were ever really on my wish list. If it has any value at all, celebrity is all about escapism and briefly taking you out of your own reality but then again, like everybody else; a tasty morsel of bitchy gossip now and then can add spice to my breakfast cereal.

The fact that you really have to search for celebs who have come out with HIV and are still alive (even rarer), suggests that the rest of the world still isn’t HIV-friendly. Certainly their dollar-eyed agents will convince their protégées that the world doesn’t want to know! I get it; I can sort of understand stars’ reluctance to inform their fans of their HIV status. If we buy into the idea that coming out with HIV provides positive role models then isn’t that every paparazzo’s wet dream and licence to pry? I wonder if that’s also enough to bring them to a Canadian, or US court on non-disclosure charges! Now there’s a test case... HIV-positive stars have sex too! However, cynicism aside, the idea of being hounded by the paparazzi sniffing out every sleazy detail is horrifying at the best of times but if the HIV-label is attached...well, you’ve seen salivating Bloodhounds!!

I know, I know; if you earn ‘x’ zillion dollars from what you sell to your paying public, you should expect your private life to be laid bare for all to examine! Not in my universe! I don’t mind if the media are rooting through people like Mitt Romney’s trash bins – they’re planning to rule the world...but your average million-selling teen-heartthrob, or gold medal winning sports star never imagined that fame would come in the first place! When it arrives overnight, with all the baggage attached and you have to live an isolated life trying to build normal relationships away from prying eyes, I can well imagine that many would happily turn the clock back to half-past obscurity. If they’re gay as well, the ball-game changes and if you then have the misfortune to become HIV-positive, life in the celebrity lanes must become nigh on impossible!

It begs the question; what are role models for?

In the case of the HIV+ superstars, they’re never going to be for kids like accepted role models: someone to look up to and try to grow up to be.  ‘Hi junior, you like me huh! How’s about growing up to be me? Here’s how we begin...’

So by definition, people in the public eye living with HIV are going to be role models for adults only and even then, a relatively tiny percentage of the adult stargazers at that. But do adults with HIV, really need their positive celebrities to live such exemplary lives that they wish we could live like that themselves? Does it even make a difference if they do? God knows, Magic Johnson has done his level best to be a role model for the black community! However, it’s precisely that community that has jumped to number one in the HIV-vulnerable groups in North American society charts in the 21^st century. Magic Johnson probably couldn’t have followed the role-model’s guide to proper behaviour any better than he has but his being a role model has turned out to be sadly irrelevant. It must make the HIV-positive potential superstar wonder what the point of disclosure really is!  If the essence of role modelling is influencing change for the better, where’s the proof that celebs who have come out with HIV have had any sort of positive influence on their fans?

We’re not exactly the easiest audience either. LGBT people are the greatest fans of...well anybody, who shows the slightest sign of becoming a gay icon in their lifetime; irrespective of talent (hi Madonna!) We follow their every move and become the ad-man’s and journalist’s prime target group for salacious gossip. We’re not a good crowd to get on the wrong side of either (ask the late Donna Summer!) So what are stars both old and new, supposed to do?

It’s become a sort of crusade to find them and many bemoan the lack of HIV plus representatives. Okay, just for fun, if you could choose, who would you want to be an HIV-role model? Obama maybe... Johnny Depp... Ryan Seacrest...Serena Williams; whoever? If you even begin to think about playing the ‘what if’ game, there must be something deeply troubling about our way of seeing celebrity don’t you think? Why would we just want people who are universally admired to suddenly turn out to have HIV and thus spread some of their popularity onto us? Is that actually how it works? Do we have a subliminal need to convince the world that even the greatest can still be great and have HIV? By even thinking along those lines, we need to acknowledge that we’re wishing HIV onto real people in order to satisfy our need to be seen as ‘normal’. This role model business probably just doesn’t work in our context.

"It is not in the stars to hold our destiny but in ourselves."
- William Shakespeare

Who came out and why?

It’s a subject that probably needs to fit into some sort of context and looking at the history of celebrity HIV-status, disclosure may help. Okay, hands up if you can name a major celeb who has come out with HIV since the early 90s? I couldn’t find any either. There are a few soapies and other minor starlets in the firmament but other than that, no big names! So has the closet in fact, become more and not less crowded with positive entertainers? Again, I get it. Given what they’re going to have to go through...who wants that kind of shit for the rest of their lives! If we’re talking about celebrities who’ve emerged as being gay; that’s a whole different story and if the publicity can be properly managed, it can even be a career choice but HIV just has seems to have too much kick-back.

Historically, the story of HIV celebrity seems to fall into two groups: those who have deliberately admitted it before they died and those who we learned were positive after their deaths. Into the latter group can be put those for whom revealing the truth was unavoidable and inevitable and they had to live out their last months or years, in the full glare of publicity. The first group however are truly brave people and have been determined to use their disclosure to achieve some sort of progress. I’ve mentioned Magic Johnson but there are notable others. You will all know of other names to add to the list but the following are probably representative of what has happened so far.

Men like Arthur Ashe (above right), who was a top, black tennis player in the 1980’s (in itself a rarity). He contracted HIV by means of a blood transfusion after heart problems in 1988 and waited four years before going public. In the last year of his life, he set out to make a difference and raise awareness and even made a speech to the UN on World Aids Day. He was a sportsman famous for his elegant playing style and gentlemanly conduct (in the days of McEnroe and Connors, more the exception that the rule!) but the dignity and courage of his public life as a black man with HIV set him apart from many others. He genuinely created a positive effect by disclosing and showed in those hostile times that HIV wasn’t necessarily a gay disease.

Another top sportsman who happened to be gay and is thankfully still alive and working hard for HIV awareness is Greg Louganis (left). He was a Los Angeles, Olympic gold medal winning diver, who became one of the faces of the Barcelona games in 1988, mainly for smashing his head on the board on the way down in a dive. It was in that year that, six months before Barcelona, he discovered that he was HIV-positive. In 1994 he announced he was gay and in 1995 he disclosed that he was positive. This coincided with his co-written book, ‘Breaking the Surface’, which resulted in his sponsors dropping him like a stone. These are the facts that most people are aware of but they only tell half the story. Louganis had a traumatic childhood and adolescence, with abuse, rape and ensuing misbehaviour as a logical result. The fact that he fought his way out of that to become a gold medallist was partly due to being spotted by the right coaches and partly due to strength of character. When HIV came along, it must have been a bitter and ironic pill to swallow but he used his situation to educate as many young people as he could and still does. The only sponsor to defend him and keep him on their books was, to their enormous credit, Speedo. That a sexy swim suit manufacturer could embrace a gay, HIV-positive man and use him as a figurehead was very symbolic. Hopefully they did it for the right reasons! That he still works so hard to get the message out means that he too can be regarded as a ‘coming-out with HIV’ success story.

The 80’s saw the loss of many talented figures from the world of art and theatre but one of those who left an abiding impression, due to his open admission of being positive was Keith Haring. Unlike many of his contemporaries, Keith Haring didn’t deny his AIDS diagnosis and during the last few years of his life, he used his artwork to provide graphic representations of HIV in that period. Like Arthur Ashe, he created a foundation that lives on today. His art work more than most, symbolizes AIDS in that period and those simple but powerful figures are recognised across the world as being representative of both the man and his disease.

Finally, another celebrity with HIV, who made a difference in his own lifetime, was Pedro Zamora. If anybody could be said to be a celebrity created by the media, it was Pedro. In 1994, he took part in MTV’s ‘The Real World’ and saw it as an opportunity to educate people on a large scale about HIV. He was brave enough to reveal his status from the beginning and was such a sympathetic character that people warmed to him immediately but his stated intention was to use the media as a way to further change people’s views about HIV and its consequences. In that respect, it was a huge success but as the season wore on he became ill and died at the age of 22, just a day after the final episode appeared on TV. His was a reality-TV story that helped make the genre so popular but it wasn’t imposed on him and he wasn’t ‘used’ by the makers. If anything, it was the other way round and it had a huge impact on public perceptions of the virus.

These four people all deserve posts to themselves. Their life stories are compelling and dramatic and maybe examples for us all in one way or another but of course, the celebs we remember most are probably those who died and left us in shock, because we hadn’t been prepared! Whether these people can be called ‘role models’ then becomes a matter of debate. They were famous for other reasons when they were alive and because of the reasons for their deaths, they are famous amongst all communities now...but role models? I’m not sure. Of course, you respond to the times you live in and revealing your HIV status had a whole set of different consequences pre-1990 but for whatever reasons, these people never stood up and told the world of their disease and really didn’t do anything to make that world a better place for others in their situation, so can they be called role-models? The answer is...perhaps; in the fact that they are famous people with huge fan bases, who died of Aids. Did their fans turn away from them and did the heterosexual population as a whole like them any less? The answer is, generally not and for that reason they became acceptable faces of people with HIV and Aids perhaps making them a sort of role model for many. However, it was their fame that made them HIV icons, not necessarily what they did for the cause.

There are a fair few examples; amongst which, Antony Perkins (Norman Bates in ‘Psycho’) and Rock Hudson, who are stand out examples from the film world and whose deaths sparked massive discussions and widespread publicity about homosexuality and HIV. For that reason, both these strikingly handsome men may be considered role-models but their illnesses were only revealed when it was no longer possible to hide it.

Freddy Mercury is another whose death shocked the world but once again, the truth was only revealed when it was physically impossible to keep secret. Openly gay and obviously outrageous; Freddy Mercury did more for the HIV movement after he was dead than ever before and in the cold light of day. His brand of hedonism was perhaps not such a great advert for people with HIV.

You could say that all three men had a talent that rose above either their lifestyle or their disease and that might be why they are still revered by so many but I really don’t believe that makes them role models for people with HIV. They are examples of people whose very public lives and deaths became media hits and it’s the combination of fame, notoriety and their manner of death that elevated them into icon status.

There are many others but not so many that you could attach a ‘movement’ or trend to. Having HIV seems to be a more closeted subject than ever before. If it’s true that practically no major stars have come out with the disease since 1991 it makes you question the value of celebrity as an inspiration to others and the moral integrity of a media that won’t allow it. You can’t tell me that no major box office names; either from entertainment, or sport, or politics, haven’t been diagnosed with HIV since 1991. It’s just not credible but whatever the numbers, nobody seems brave enough to tell all anymore. 

So do we want to hear about stars living with HIV? More to the point, do we need to? I’m a fan and have been inspired by many of their talents but they’re rarely role models for me. Personally, I believe a role model is someone who inspires by example but that comes from ‘doing’ rather than ‘being’. Just being famous isn’t enough; you have to work for other people in your situation and do it without reward or plaudits. You’ll probably never know the names of the true role models in the history of HIV because the care and freedoms that you take for granted have already been fought for behind the scenes.

"We are all in the gutter,
but some of us are looking at the stars."
- Oscar Wilde

For the curious, this Wiki link will provide a meagre selection of celebrities, minor or major, who have been HIV-positive.

I've never really heard people ask this question – strange in itself when it looks like every question about HIV has been asked, and written about, often – but it's whether people living with HIV are inherently different?  I’m talking about more prone to taking risks and thus more susceptible to becoming infected. Sure, we know all about vulnerable populations, social determinants of health and all that, which are often fingered as the culprits in HIV infections. But let’s face it; the reality is that many, many people from vulnerable populations and with ALL the social determinants of health looking pretty good  DON”T get infected.  So what is different about the ones who do?

What’s different about me too?  Me, the ex-banker, me the semi-privileged white guy.  Why did I get infected?

Who knows? But there are so many me’s out there - people of privilege with HIV - that it’s perhaps naïve to suggest that those social determinants of heath are all that’s going on, all that’s driving the epidemic. So pouring millions in to addressing the social determinants of health, while producing very desirable collateral benefits, will never, ever end the epidemic.  It’s the plain truth that some of  those, perhaps in large numbers, whose social safety nets are firmly in place are still going to get infected one way or another.

It all boils down to this: whatever our backgrounds, whatever our socio-economic status, we take risks. It’s natural – some would say admirable - behaviour.  It’s just that some do it more than others.  Me, I guess, included.

Bad luck can’t be ignored of course, and I’d wager that’s a big factor in many an infection. But I’d wager too (us risk takers do a lot of wagering, no?) that a certain propensity for risk taking is an even bigger factor. Which raises the question “do people with HIV have an attitude towards risk-taking that sets us apart from our negative brothers and sisters?” 

It’s kind of an impolite thought, so we seldom go there. But surely it’s a proposition worth looking in to.  It’s the case, after all, that if you are HIV–positive your past life has probably been marked either by taking one big risk or, much more likely, a whole series of risks. Risks perhaps that negative people would never think of taking.

This may be uncomfortable territory to ask, but what else suggests that we poz folks are a nation of risk takers?  Well, a lot of us smoke for one, three times the national average.  Some will suggest reasons for that – self medication, for instance or stress relief – but smoking is nevertheless surely a continuation of the risky behaviour that got us positive in the first place.  Ditto the use of street drugs – we use them more than the general population, an activity that may risk health and certainly risks exposure to the legal system. Many of us all aren’t all that treatment-adherent either and that is as risky as hell.

There are potential reasons for all these risky behaviours, of course, and more than  a few of them bounce right back to the social determinants of health.  But can we avoid also looking at us - what makes us tick as persons. Maybe we are just less averse to taking risks than most people?

If there is even a chance that this is a viable hypothesis, maybe –  just maybe - researchers should be looking at that. Our relative propensity to take risks (or not) is not a hard one to measure. But I’ve seen nothing in the literature about it.

Why is this even important?  It’s becoming increasingly clear, I think, that how we all process risk is an issue destined to be at the heart of future prevention efforts.  Or at least it should be, because even if treatment as prevention holds sway, we will still need to look at a variety of other techniques to stem the epidemic, and  behavioural interventions will remain important. I’d wager (here we go again with the wagering – see what I mean?) that HIV education and awareness won’t have legs; most people - even the young - know about HIV now, know about condoms, know how to use them. Most too are to some degree committed to using them when they consider themselves at risk of infection.  Strikes me we now need to go one step further, to  look at what happens to those best intentions that see those condoms left unused, usually in the heat of the moment. And at the heart of those situations where best intentions get tossed aside is our approach to risk.  Which brings me back to our original point - we all process risk individually.

Me, I wouldn’t classify myself as a risk –taker, in fact my career in the bank – it was boring by the way – was in risk management, of all things.  But clearly I am, or I wouldn’t be poz. Interesting too that while I don’t have much money, I like gambling. My partner and I go to the penny slots quite often – and enjoy it, risking a few dollars for the sake of a good time.  Sound familiar?

Of course you can’t talk about our propensity for taking risks without acknowledging we all do it, poz or neg.  You’ve crossed the road, haven’t you?  Been in a plane, eaten too many French fries for your own good?  It’s part of life.

PositiveLite.com writer Michael Bouldin said it best:  ”It’s not that we don’t know what constitutes risky behavior; it’s that it’s simply not possible to always avoid it, or in a given moment even desirable. Walking a red light can get you killed; it can also get you to a job interview on time.”

So really it’s all a question of degree. We take risks every day. I’m just suspecting many of us pozzies have been prepared to take it one step further, because that’s the way we are. Maybe, just maybe, we are wired that way.

Ok.  Shoot me down. I can risk that. But you knew that already . . . 

This article first appeared on Bob's other blog over at the Body.com here.

The conference is over. It’s been an amazing experience and I am so grateful to have been part of it.

A few highlights.

Show Me the Love: Poster Presentation.

One of the reasons I went to the conference was to present the findings of Show Me the Love. Getting the opportunity to present our research in the Poster Exhibition and discuss the results with delegates from around the world was a great opportunity!  But, AIDS 2012 has a strict embargo policy that forbade any dissemination of the findings until after the conference, so now that the conference is over, I look forward to sharing the findings that, I believe, are pretty important.  I will share the findings more comprehensively in the near future with PositiveLite.com readers, but for a quick sneak peak, you can see me telling Mark a little bit about the findings in his latest video on My Fabulous Disease.

Interestingly, as soon as I started describing the research to Mark, he quoted the Denver Principles, which I had also cited in our final report, and which to me, represented one of the reasons this research matters:  The rights of people with AIDS include the right to “as full and satisfying sexual and emotional lives as anyone else.” 

Learning about Video-Blogging 

I know that Mark was disappointed that no cute guys participated, but the breakout sessions at a social media skills-building workshop (led by Mark and a number of people from the Body.com, A Girl Like Me and Positive Women’s Network,) led to a private one-on-one session with me and Mark on video blogging. Woo-hoo! This private attention meant that I got a full-on brain-dump by Mark. This break-out session could have been called “everything Mark knows about video blogging, in 30 minutes.” I know he was exhausted – actually, I was too – so I really appreciated his attention. I learnt more in that session than any other. And, he followed up the next day by visiting my poster! 

A few great sessions 

At an international conference, not all talks are going to be relevant, and not all speakers are going to be good. Some abstracts will misrepresent what information will actually be shared, and celebrities are often not good speech-writers.   If you are looking to get caught up by watching the webcasts, here are my recommendations: 

July 23: The Plenary. Watch the whole thing.  It includes an excellent summary by Dr. Anthony Fauci at the beginning and a good address by Hilary Clinton at the end... but in the middle, it has the best speech given during the entire conference. Not just in my opinion, but, it would seem, in the opinions of many. Whenever I would ask people I met what they have thought of the conference, the answer would always be, “that guy who went on before Hilary was really good.” “That guy” - not a celebrity, nor a politician, is Phil Wilson, from the Black AIDS Institute, and he gave the most powerful speech of the conference. 

July 25: In the Plenary, be sure to watch Linda Scruggs on “Making Women Count:  A Comprehensive Agenda”.  Absolutely fantastic. Coming in after a technically- heavy couple of speeches, Linda makes the issues real by weaving in her personal experiences. She has wit that makes you laugh out loud, but a sensitivity that will bring tears to your eyes. And yet her fervor drives home how important it is to include women as full partners and participants in AIDS programming and research. 

July 26: This plenary was good too. It includes the Ugandan speaker, Dr. Paul Semugoma, addressing the importance of involving MSM (who I mentioned in Friday’s post) as well as some important presentations about sex workers. The fact that sex workers from around the world were excluded because of travel bans was a theme that ran through the conference, thanks to the well-organized protests and usage of props by the committees. Some of these presentations – especially the one by Cheryl Overs, which included a video from sex workers in Russia and Eastern Europe – drove home why these issues are so important and reminded us of the principle, “nothing about us, without us.” 

Renewed commitment 

Many times in this conference I’ve returned to my hotel room with blood-shot eyes and aching shoulders, hoping to get as much sleep as possible before rousing again at 6AM.  The news here has not all been good, in fact there’s been enough troubling information for me to stand before the Martin Luther King Jr. monument, and for the first time in my life, question the words of my hero – that the “moral arc is long, but it bends towards justice.” But, at the same time, I feel a sense of renewed vigor and excitement to the projects we are working on at home, reminded of their importance, and inspired by the passion and commitment of people worldwide. I love this field. I love that I work in an area where we push each other and ourselves to address every element of human rights, that we fight for inclusiveness and equity of every angle.  I love addressing the challenge of making issues like sex and pleasure topics that can be embraced rather than hidden. Doing this involves creativity, compassion, tenacity and, as Elton John said, “love.” I want to see the goals we’ve set for ourselves come true. I want to work in this field until it ceases to exist.

History, despite its wrenching pain, cannot be unlived, but if faced with courage, need not be lived again

Maya Angelou

I believe there comes a point in nearly every trans person’s life where they must decide what to do with their personal, pre-transition history. I have wrestled with this choice in the past and I continue to wrestle with every time I meet someone new. I need to decide if I am going to own my past or shun it.

The choice before me is daunting. On one hand, owning my past can be fraught with explanations, side trips into education and awkward moments a-plenty. Trying to explain to a newly made friend that there had been an entire life prior to the current incarnation can be offputting, to say the very least.  On the other hand, denying that there WAS a whole lifetime prior to my current presentation denies me the wealth of experience and knowledge brought by my previous life.

Indeed, it feels very much like my life pre-transition is a whole and separate entity of its own. I look back at my past with a sense of bewildered detachment at times and wonder who that person was. I realize that the person to whom those experiences belong is me, however at the same time, I barely recognize that individual anymore. What I see is a young girl who lives in a fog of confusion, fear, sadness and pain. Someone who spent many of her days trying to decide if she was crazy or if there really was something wrong.

I remember the days and nights I spent questioning my own sanity. I couldn’t get rid of the sense that there was something deeply and fundamentally wrong with me. It was so hard to explain that the wrongness wasn’t about a moral badness, but a sense that something just didn’t fit right. I felt out of step, out of touch and not comfortable in my own skin.

The kind of past that, to this day, still brings back feelings of shame, isolation, fear and sadness. I remember the hours spent in my room feeling pain so sharp that my only relief would be through self-injury. There were always waves of shame that would follow the brief relief of that pain. I felt such a deep and profound sadness that, on more than one occasion, I considered taking my own life as a solution. I’m terribly thankful I never did choose that option. I lived with a constant sense that I wasn’t quite like everyone else and, for the life of me, I couldn’t ever figure out why. It is a frustrating past indeed.

Those parts of my history are one’s I’d rather forget.

I can’t forget them however, as those experiences often lie alongside good and happy memories. I have memories of living out on Vancouver Island, moving to downtown Toronto, spending time with good friends and being briefly relieved of the pain and sadness. I remember finding out that I was going to have my first child and how amazed and filled with hope I was. There was all this despite the fact I was essentially homeless, dirt poor and had no plan. I remember how the Universe dropped the chance to live in B.C. in my lap and how grateful, excited and blessed I was to be given the chance to live in one of the most beautiful places on earth (if you ask me).

Those parts of my history, I don’t want to forget. Nor do I want to deny they ever happened.

I don’t think it’s ever a good idea to deny the past, no matter how painful it may be.

My past is an integral part of who I am. The experiences, both good and bad, have shaped me into being the person I am today.

Erasing my past and trying to present as a whole person feels very much to me like perpetuating a lie. I didn’t have a boyhood, I didn’t watch my penis grow and start doing crazy things. My dad never sat me down and had ‘the talk’ nor was I expected to ‘suck it up’ because I was a boy. I don’t share the same boyhood programing as many men in this society do.

Instead, I was taught not to make a fuss. I learned that, while it is ok to have an opinion, voicing it too loudly is never a good idea. I do have to say though, that last one didn’t take so well.

Still, completely rewriting my past to suit my present is, tantamount to boldfaced lying.

So, instead of lying, I have to walk the fine line between disclosure and discretion. Choosing whom to tell what to and trying to decide if the person I’m speaking to is safe enough to come out to.

Not a great choice, but the best one I feel I can make under the circumstance. Authentic, honest and open.

This article first appeared on the CATIE website.

Une version française est disponible ici. 

If healing to a large extent means making people feel whole again, then looking at the whole person may be the most effective way to heal. That is the idea behind some innovative Canadian programs that are addressing the needs of people living with or at risk of contracting hepatitis C.

Toronto’s South Riverdale Community Health Centre (SRCHC) is one such place where caring for a client means attending to all of their needs with respect for their situation. As the Hepatitis C Program Coordinator at SRCHC, Zoe Dodd has been working with patients living with hepatitis C for eight years and acknowledges discrimination sometimes denies people the care they deserve: “I can’t think of another disease where people have to prove that they’re deserving of life.”  

Some of Canada’s most vulnerable populations represent 50 to 70 per cent of the quarter million people currently living with hepatitis C. While these are people of any age who inject drugs, are in prison, and are living on the street, they are predominantly youth.

In order to reach these populations, South Riverdale and two other organizations are embracing this thought: When we feel most vulnerable and our well-being is at stake – no matter the reason or cause for our ailment - being treated with respect can go a long way to addressing our needs and, ultimately, yield some very positive results in our health and well-being. Using unique methods, all three organizations employ an approach towards their clients that is neither judgmental nor authoritarian, but rather grounded in developing a mutual trust and rapport, and taking into account the broader context of their clients’ lives.

In Vancouver, Insite operates on a ‘harm reduction’ model, embracing the non-judgemental philosophy.  Known broadly as the only legal supervised-injection site in Canada, Insite, which receives up to 1000 visits per day, actually fully engages clients in treatment and care and moves them away from chronic drug addiction, by showing them a sense of worth.

"she began to recognize Insite as a place of warmth and caring, a place where she could trust to ask for help with housing . ."

A prime example of this approach, says Darwin Fisher, Coordinator at the facility, is the case of one woman who, toughened by life on the street, initially showed hostile behaviour. Gradually, she began to recognize Insite as a place of warmth and caring, a place where she could trust to ask for help with housing. Today she has drastically increased her health and has even taken initiative to reconnect with her children; a prime indicator, says Fisher, of a “new-found sense of self-worth.”

As an initiative of the Portland Hotel Society (PHS) Community Services, Insite is “designed to be as low-barrier as possible for its users, recognizing that for the most at-risk users, accessing health care in a clinic or ER can be fraught with difficulties,” adds Fisher. “The detox space allows participants individual rooms with en-suite bathrooms. [It’s] a small, but significant detail in terms of dignity and privacy,” particularly for participants who are living on the street. 

Insite’s measures of success include any “visit to detox or any other move towards wellness, no matter how brief, which further reflects their non-judgemental philosophy to hepatitis C care.”

On the opposite side of the country, Halifax-based Hepatitis Outreach Society of Nova Scotia (HepNS) embraces the principle of developing a mutual rapport and trust with clients with a ‘peer-based model.’  Through the ‘Spread the Word’ project, the Society’s peer facilitators – people who have first-hand knowledge of some of the realities facing their clients – equip clients with accurate information, so they  can in turn spread the information forward, in order to attract at-risk populations to get tested, and to engage people living with hepatitis C.

"clients invariably agree that the ‘first hand’ accounts of the peer facilitators are especially valuable...."

In workshop settings, peer facilitators discuss the importance of testing and the benefits and difficulties of treatment. The information is initially provided in a structured setting, but clients invariably agree that the ‘first hand’ accounts of the peer facilitators are especially valuable. It is through “the informal discussions that peer facilitators develop a mutual rapport with the clients, and gain their trust,” says Adam Dolliver, a workshop facilitator at HepNS.

“Your information is great, but you don’t know what it’s like living my life, while a [peer facilitator] does,” explained a participant at a recent HepNS workshop. The peer counseling not only encourages engagement with treatment recommendations, but also increases the client’s attendance, which is crucial to success.

In Ontario, multidisciplinary clinics have proven to be highly effective in treating people living with hepatitis C by offering a ‘one-stop shop’ that provides clients ongoing care in every aspect of their lives. By taking into account the broader context of a patient’s life, multidisciplinary clinics such as the one at South Riverdale CHC “recognize that there are certain things that impact a person’s health, such as poverty or homelessness,” explains Dodd, emphasizing how at South Riverdale, “we even provide wound care, foot care, chiropractic care or cooking lessons.”

Unlike other hepatitis C treatment centers, South Riverdale not only provides treatment from a harm reduction perspective, but also addresses the other needs of a patient such as needle exchange, housing, group support, or advocacy.  In one case, the Centre welcomed an individual who had been denied treatment by his specialist due to his continued use of crack cocaine. Upon accessing care, all of his needs were identified and addressed from the onset, and the patient was able to finish his treatment and clear the hepatitis C virus. He is now working in the community as an advocate for people living with hepatitis C.

These various approaches to patient treatment and counseling are successful because they are grounded in one basic concept, says Fisher, “We need to make health care fit the participant rather than the other way around.”

For more information on hepatitis C, or for a listing of World Hepatitis Day events happening in your region, visit www.hepCinfo.ca and click on the World Hepatitis Day logo.