This article first appeared in The Positive Side, a publication of CATIE.

Une version française est disponible ici.  

“If you know your history, then you would know where you coming from.”

 —Bob Marley, Buffalo Soldier

Though we come from diverse backgrounds and life experiences, people living with HIV all share a common history: the history of the AIDS epidemic. But some 30 years into this epidemic, many of us scarcely know the stories that serve to bind us together as a community. Like the stories of most stigmatized identities, our shared history is difficult, painful and challenging, but it also speaks to the strength and resilience of people with HIV.

Movies offer us one way to connect to those stories and a window into the historical trajectory of AIDS. So, as the weather grows colder, why not gather together your friends with HIV and the people who love and support you around the modern campfire—the TV screen? Grab a warm blanket and a big bowl of popcorn and spend an evening learning the stories that unify us and make us proud to be who we are. A monthly movie night exploring the history of HIV could make for a cozy, inspiring, even therapeutic way to while away the cold winter.

THE BEGINNING IS AS GOOD a place as any to start your viewing. Two entertaining and informative films that deal with the origins and early history of AIDS are the docudrama And the Band Played On, based on the 1987 bestselling book of the same name, by American journalist Randy Shilts, and Zero Patience, an AIDS musical by maverick Canadian filmmaker John Greyson. And the Band Played On presents a scathing critique of government and medical responses to the emergence of AIDS. It sets out the facts, while Zero Patience assumes that you know these facts and weaves a campy Canuck yarn that turns these “facts” on their head.

And the Band Played On

And the Band Played On was first shown at the Montreal World Film Festival in 1993, then broadcast on HBO and later released in movie theatres. It takes us back to the early 1980s, as gay men in major American cities are beginning to die of an unknown illness. Doctors, politicians and gay leaders grapple, with varying degrees of competence, with the disease that would eventually become known as AIDS. Of particular interest is the film’s account of the ugly competition between French and American research labs to claim the dubious distinction of discovering the virus that causes AIDS—a competition that unfolds as the death toll mounts. The film also documents the attempts by public health officials to close gay bathhouses in San Francisco, in order to contain the spread of HIV, and the subsequent resistance from gay community leaders who see this as an attempt to control their lives. And the Band Played On introduces us to French Canadian flight attendant Gaetan Dugas, whose sexual exploits became a sort of gay urban legend in the late 1980s. As a result of Shilts’ investigative journalism into the origins of AIDS, Dugas became known as “Patient Zero,” the man who allegedly introduced AIDS to North America. (It is now known that this wasn’t the case.)

In addition to its sharp rebuke of politicians and AIDS researchers, this early Emmy Award–winning film brought Hollywood star power (including Matthew Modine, Lily Tomlin, Alan Alda and Richard Gere) to bear on what was still a relatively taboo subject. Recall that then-U.S. President Ronald Reagan did not publicly say the word AIDS until 1987, the year Shilts’ book was published—a full six years after people first became aware of the disease in the U.S. and after 21,000 Americans had already died of AIDS.

Zero Patience

CANADIAN FILMMAKER JOHN GREYSON’s surreal musical Zero Patience premiered at the Toronto International Film Festival in 1993—the same year that And the Band Played On premiered in Montreal—and went on to receive much recognition in Canadian cinema and queer theory circles. Its plot is delightfully convoluted, involving time travel, a buoyant soundtrack by Glenn Schellenberg and a cameo role as Miss HIV for Michael Callen, an early American AIDS activist who championed the rights of people with HIV. The film’s title alludes to “Patient Zero” Gaetan Dugas, whose reputation, tarnished in And the Band Played On, is rehabilitated by Greyson, who portrays his engagement in early AIDS research as helping to establish AIDS as a sexually transmitted disease preventable through safer sex. The title also alludes to the urgency of AIDS activism. When Zero Patience came out, Greyson and others involved in the film said: “We wanted to explode the opportunistic myth of Patient Zero…[and] celebrate the courage and sass of an international AIDS activist movement that has tirelessly fought for the rights of people living with AIDS.”

Philadelphia

JONATHAN DEMME’S Philadelphia is a must-see film: It was the first mainstream Hollywood movie about AIDS to reach a broad audience. Philadelphia chronicles the final days of gay lawyer Andrew Beckett (played by Tom Hanks, who won an Academy Award for his performance), who is unjustly fired from his law firm when his health begins to fail as a result of AIDS, and the dawning sympathy and politicization of his attorney Joe Miller (played by Denzel Washington), whom he hires to defend him against this unlawful dismissal. Though Beckett wins his case and receives loving support from his partner, family and friends, there is no happy ending to Philadelphia, conceived of and brought to the screen in the early 1990s, when AIDS still conveyed a death sentence. Attending this film when it was first released, I recall that sobs could be heard throughout the darkened theatre as this film drew to a close—I was certainly trying hard to compose myself as the lights went up.

Three Needles

IN ADDITION TO ITS NORTH AMERICAN PREMIERE at the Toronto International Film Festival in 2005, Nova Scotia resident Thom Fitzgerald’s film Three Needles was shown at the 2006 International AIDS Society Conference in Toronto. Starring Stockard Channing, Olympia Dukakis, Sandra Oh, Lucy Liu and Chloë Sevigny, this ambitious film tells three stories of HIV transmission worldwide. In rural China, the black-market trade in blood results in the spread of HIV throughout a small village. In South Africa, the myth that sex with a virgin can cure AIDS has dire consequences in an orphanage. And in Montreal, a second-rate porn star searches for a way to pass his mandatory HIV test despite the fact that he is HIV positive. Though this film sometimes sacrifices the facts about HIV for the sake of a more coherent plot, it is important in its efforts to engage with HIV issues beyond North America.

Viewing these four films—available at your local video store or on Netflix or Amazon—may inspire you to check out other movies about HIV. Last year, two major movies about AIDS, United in Anger, a history of the AIDS activist group ACT UP (AIDS Coalition to Unleash Power), and Vito, about activist/writer Vito Russo, screened in theatres. And in Montreal, there’s the HIV/AIDS film festival VIHsion. Online you can check out some of the more than 100 fascinating interviews with members of ACT UP New York that make up the ACT UP Oral History Project.

Know your history: It will make you proud.

Darien Taylor is CATIE’s former Director of Program Delivery. She co-founded Voices of Positive Women and is the recipient of a Queen Elizabeth II Diamond Jubilee Medal, awarded to Canadians who have demonstrated an exceptional commitment to HIV/AIDS work. Darien has been living with HIV for over 20 years.

The sister article “Le sida dans le cinéma” in Vision Positive explores HIV in French cinema. 

*****

AIDS Goes to the Movies

Here is a short list of the features and documentaries made in North America since the start of the epidemic: 

AIDS: No Sad Songs (1985) – First major Canadian doc made about what was at the time a taboo topic. Explores the social and emotional effects of AIDS on people living with HIV and their loved ones.

Parting Glances (1986) – Indie film about a gay couple in New York City. One of the first American feature films to portray AIDS.

Doctors, Liars, and Women: AIDS Activists Say No to Cosmo (1988) – Award-winning short that documents AIDS activists taking over the editorial offices of Cosmopolitan magazine after it ran an article claiming that a straight woman could safely have unprotected sex with an HIV-positive man.

The Ryan White Story (1989) – Made-for-TV movie based on the true story of Indiana teenager Ryan White. In 1984, White became infected with HIV from contaminated blood treatment for his hemophilia and fought for his right to attend school after being expelled because of his infection.

Common Threads: Stories from the Quilt (1989) – Academy Award–winning doc about the lives and deaths of people commemorated in the AIDS Memorial Quilt.

And the Band Played On (1993) – Docudrama on the early history of AIDS, based on the bestselling book by Randy Shilts.

Zero Patience (1993) – John Greyson’s AIDS musical about how the media, government and scientists responded to AIDS in the ’80s.

Philadelphia (1993) – First mainstream Hollywood movie about AIDS. A successful young gay lawyer living with HIV takes his employer to court for wrongful dismissal.

Angels in America (2003) – A six-hour HBO miniseries adaptation of the Pulitzer Prize–winning play about the intertwined lives of people affected by the growing AIDS epidemic. Set in New York City during the Reagan administration.

Three Needles (2005) – Three stories about the AIDS epidemics in South Africa, China and Canada, from Halifax-based writer and director Thom Fitzgerald.

We Were Here (2011) – Doc in which four gay men and one straight female nurse share stories about how they were impacted by the epidemic in San Francisco.

Positive Women: Exposing Injustice (2012) – Four HIV-positive women (including Claudia Medina profiled here) talk about the impact of Canadian laws that criminalize HIV non-disclosure.

United in Anger: A History of ACT UP (2012) – Doc about the direct actions of ACT UP (AIDS Coalition to Unleash Power) to combat corporate greed, social indifference and government neglect.

How to Survive a Plague (2012) – Oscar-nominated doc about the activism of ACT UP (the AIDS Coalition to Unleash Power) and TAG (the Treatment Action Group) in the U.S. during the late ‘80s and early ‘90s.

The Normal Heart (pre-production) – The book and play written by activist Larry Kramer about his efforts to raise awareness about AIDS in the ’80s, to be turned into a feature film.  

This article with  interviews by RonniLyn Pustil  first appeared in The Positive Side , a publication of CATIE.

Une version française est disponible ici. 

Robert MacLeod, 36

 Halifax

 HIV+: 8 years

 Job: Medical lab technologist

 How many tattoos do you have?

 Hundreds.

 Why so many?

This is a question I get asked a lot. Tattoos are my passion, my hobby, my obsession. I got each one for a different reason.

 What are some of the reasons?

Each tattoo has a unique source of inspiration. When something happens in my life that I feel is significant or meaningful, I add a new tattoo to represent that event. That way, I’ll always remember that moment in time.

What do your tattoos represent to you?

My skin is a living canvas of my experiences. My life’s story is etched in the lines and shading. I was born naked and screaming, waiting for my life to write itself on my skin. The connection goes way beyond a needle and some ink: It’s about art, expression and sharing.

How do people generally react?

Reactions are mixed. The first impression I give to the world is not an accurate picture of who I am—people think I just got out of prison or I’m a thug. I actually have a successful professional life! But most reactions are positive. People often stare and I get a lot of strange looks. They always want to know why I have so many tattoos. I don’t feel I need to justify this in any way. Simply put, tattoos are my passion and I take pride in them.

Do you have plans for any more?

Absolutely! As my life’s story continues to write itself, there will be more important times and events to represent. I can tell you what I was feeling at the time I got each piece and what it means to me. Years from now, when my life story ends, it will all be there in permanent ink.

Mike O’Shaughnessy, 40

Vancouver

HIV+: 8 years

Job: IT support tech and writer

How many tattoos do you have?

Many, all over my upper body.

Why did you get them all?

Originally, as markings to remind myself of specific events. Now they are ways to redefine how I’m seen and how I see myself. In effect, I draw the person and the life I want on my own skin.

What’s the story behind them?

Each tattoo was inspired by something important to me—either something beautiful or a life-altering experience.

The first was a small rune that means “See-er of truth.” It’s over my heart—a reminder to remain true to myself.

The tattoo on my back, designed using tribal styling, hints at wings—representing flight, freedom and, as they extend onto the upper backs of my arms, protection. The designs were extended onto my upper chest and into sleeves for both arms.

The last tattoo to date is a set of letters—LJ, the initials of a man I loved very much, Little John. It was commissioned as he was dying in the hospital in 2005 from AIDS. In the last real conversation I had with him, I took his hand, as he was almost blind by this point, and traced the letters with his fingers, explaining that he would be, for all time, a part of my skin, of me. He died two days later.

How do people react to them?

Often with a prejudiced sense of who I am.

Frankly, it’s useful as a gay man. Sometimes, when I’m walking around late at night, people see a shaved-head, bearded, jeans-and-boots kind of guy with tattoos. It’s easy to just leave it at that and be left alone. In other circles, people find them attractive and striking. Those who approach me about them are often surprised and amazed by the clarity and depth of the colour and the overall sense of coherent design. Among gay men, it’s often an excuse to touch my arms (laughs).

Do you have plans for any more?

At some point I’d like to get my legs done with something evoking earth. Tattoos truly are addictive.

Catherine, 34

Montreal

HIV+: 12 years

Job: Self-employed

How many tattoos do you have?

One.

What’s the story behind it?

I became close friends with a woman from the Bahamas. We’re now like sisters—we say we’re sisters by choice. We’re both transsexual. When I was visiting her in the Bahamas, four or five years ago, we got the same tattoo: a butterfly. For me, it’s a symbol of being trans. It’s on my left breast. When I wear something low-cut, you can see it.

Plans for any more?

I’m thinking of getting another one on my arm. I’m an activist when it comes to trans rights, and I’m proud of it. There’s a trans logo, which consists of an arrow on top and a cross on the bottom—a combination of the man and woman symbols. I found one on the Internet that’s really nice; it’s done in a Celtic style. That’s the one I’d like to get. I need to be proud of being trans and live it.

I might get it this winter. Since I hate pain, I need a good reason to get another one!

Kyle Vose, 40

Toronto

HIV+: 10 years

Job: AIDS and anti-poverty activist

What’s the story behind your tattoos?

I always wanted a tattoo when I was younger but I grew up religious and was told it was wrong. When I came out, my religion was taken away from me, so I got my first tattoo about 11 years ago.

How many do you have?

Ten. My first one was a flying fire-breathing dragon with blood coming out of his claws. I got another one on my other arm in Hebrew script—chai, the Hebrew word for life. On my back I have two tattoos that are for my kids: One is a heart with both of their names in it and the other is a little map of Ecuador, where their mother is from. I also have a tribal tattoo on my back. From my pelvis to my belly button, I have a tribal-floral image with a couple of thistles coming out of it. The flowers symbolize life, but the thistles mean, if you treat me the wrong way, I’ll hurt you.

Do you regret getting any of them?

One of my tattoos got me infected with HIV and hepatitis B. I had it done at someone’s house who was learning to be a tattoo artist. I don’t blame them. You have to know the risk when you’re going into something. You can’t expect someone else to protect you when it’s your job to protect yourself. I ended up in the hospital exactly three weeks after that tattoo, so I figured it was that.

Do you want to get rid of that tattoo?

That tattoo is a garden—sometimes you plant something and you might not get exactly what you were expecting. I’m very spiritual, so I feel like this might have been given to me for a reason. A lot of people make mistakes, so why am I going to beat myself up for it? I’m going to use it to my advantage, as a stepping stone and not as a crutch.

How do people generally react to your tattoos?

The Hebrew ones get the most reaction. I almost got fired from a job because I offended an Orthodox person with my Hebrew tattoos. And I get a lot of people asking what they mean. That’s usually an opening for me to do outreach about what I do.

Do you have advice for people who want a tattoo?

If you’re getting a tattoo for a relationship, have a backup plan in case it doesn't work out. You might need to get creative if the relationship doesn’t survive.

Plans for any more?

I’d like to get at least one or two more. At age 22, I had Hodgkin’s disease. I struggled through it but I survived. After that, I got HIV and hepatitis B. Then I had a heart attack and they didn’t think I was going to make it. And now I have diabetes. It’s amazing that I’m still here. So I want to get a hand tattooed on my ankle to symbolize somebody or something pulling me back down to earth, to keep me here. There’s still more work for me to do—it’s not time for me to go yet 

Bob Leahy:  Thanks for talking to us. James, we're hearing a lot about treatment as prevention lately, particularly since HPTN052 and then the 2012 International AIDS Conference in Washington.  But for those who haven’t been following, can you give a quick outline of the science behind treatment as prevention and why it holds promise at the population level?

James Wilton: We can think of treatment as prevention in two ways: as a prevention strategy for individuals and as a public health strategy to reduce HIV transmissions (or HIV incidence) in a population. These two types of “treatment as prevention” are related but also have important differences. Each type raises its own issues and concerns, so it’s important to know the differences between the two and not use them interchangeably.

At the individual level, the term “treatment as prevention” refers to the use of antiretroviral treatment by a person living with HIV to reduce their personal risk of HIV transmission. Research shows that treatment can reduce HIV replication in the body and lower the amount of virus, or viral load, in the blood and other bodily fluids to undetectable levels. Since viral load is an important factor that determines whether an exposure leads to HIV infection, being on treatment and having an undetectable viral load can reduce the risk of HIV transmission. A study known as HPTN 052 has shown that treatment can reduce the risk of HIV transmission by up to 96% for people living with HIV in heterosexual serodiscordant relationships.

As a public health approach, the goal of “treatment as prevention” is to reduce the number of new HIV transmissions in a population by increasing the proportion of people living with HIV who are on successful antiretroviral treatment.  Since we know that treatment can reduce an individual’s viral load and risk of HIV transmission, this strategy may be able to reduce the overall viral load circulating in a population (also known as community viral load) and help control the spread of HIV. Some research shows that rates of new HIV transmissions have been reduced in populations where the proportion of people living with HIV on treatment has increased and the community viral load has decreased.   

But then you and others have suggested, probably quite rightly,  that the reductions in HIV transmission rates we’ve seen in studies like HPTN 052 – the 96% for instance, albeit in mostly heterosexual couples - may not be played out in the real world. Why would that be?

The results from the HPTN 052 study confirmed that “treatment as prevention” can work at the individual level. It told us that a person living with HIV (who is in a heterosexual relationship and mostly having vaginal sex) can reduce their personal risk of passing HIV to their partner by up to 96% by starting antiretroviral treatment.

However, this reduction in HIV transmission risk was achieved under the “ideal” conditions of a clinical trial. In clinical trials, participants are commonly provided with high levels of support services. Couples in the HPTN 052 study were provided with ongoing adherence support, viral load tests to monitor drug resistance, and STI testing and treatment.  All of these services helped ensure the success of treatment at reducing the risk of HIV transmission.

Will heterosexual serodiscordant couples experience the same reduction in HIV transmission risk in the “real world”? Possibly, but it’s pretty safe to assume that it will depend on whether the couples have access to the same services as in the HPTN 052 study and how often they used them.  For example, a recent “real world” study of heterosexual serodiscordant couples in China found that treatment only reduced transmission rates by 26%. It’s clear that treatment will be less than 96% effective at reducing HIV transmission risk if pills are not taken regularly, drug resistance develops, or STIs aren’t managed.

Furthermore, the HPTN 052 study did not tell us how well “treatment as prevention” will work as a public health strategy. Remember, this study enrolled a group of HIV-positive people who already knew their HIV status, were in care, and had access to treatment. This isn’t the case for many HIV-positive people outside of a clinical trial. In a “real world” population of people living with HIV, some don’t know their HIV status, have not or cannot access care, have not remained in care, or have not or cannot access treatment. These types of barriers will limit the number of people who have an undetectable viral load and, therefore, the success of a “treatment as prevention” strategy.

The HIV treatment cascade (or HIV care cascade) is a recently coined term for the continuum of steps and services required for a person living with HIV to achieve an undetectable viral load. These include knowledge of HIV status through testing and diagnosis, linkage to care, support to remain in care, support to access antiretroviral treatment, initiation of treatment, and support to adhere to treatment. Gaps or “leaks” in this cascade mean that, in general, only a relatively small proportion of people living with HIV in a population have an undetectable viral load.

For example, in the United States it is estimated that only 28% of people living with HIV have an undetectable viral load because people “leak” out at different points in this cascade. There are no accurate estimates for Canada, but preliminary data suggest that we may have a similar situation here. According to the Public Health Agency of Canada, 26% of people living with HIV do not know they are HIV-positive and therefore can’t access care and treatment services. We are only just beginning to look at where we are falling short in other parts of the treatment cascade in different regions and populations in Canada.

OK, so let’s look at what treatment as prevention looks like in practice.  Aren’t we doing it already? You’ve said in the past a treatment as prevention strategy is really about doing a better job at what we should already be doing. That implies performance gaps. Can you be specific as to where we’re falling short right now?

Yes, to some extent, we are doing it already. Although we didn’t know it at the time, potent combination antiretroviral treatment (commonly called ART or HAART) began preventing HIV transmission when people first started taking it in 1996. Since then we have gained a much better understanding of the role earlier treatment can play in preventing HIV transmissions and improving the health outcomes of people living with HIV. As a result, we have begun to think about how we might do things differently; for example, by taking a more proactive approach to engaging people living with HIV in testing, care and support, and treatment services. 

There are a number of things we need to be doing a better job at. We need to improve access to different types of testing, rethink our testing strategies and develop more innovative ways of linking people who test positive to care and support services. Once a person is in care, we need to do a better job of supporting them to stay in care and linking them to appropriate services. Education and counseling needs to include information on the health and prevention benefits (and risks) of earlier treatment. Finally, people who want to start treatment need to have access to the medications and then be supported in their adherence (ability to take their medications every day, exactly as directed). Achieving improvements in engagement will also require new partnerships to be formed so we can bridge the divide between clinic and community. For example, peer navigation programs deploy peers from the community into clinical settings to help people living with HIV navigate their way through the healthcare system after diagnosis.

Improving engagement of people living with HIV in healthcare and social services is something we should be doing anyways, regardless of the role treatment plays in prevention. I don’t like the term “treatment as prevention” because it suggests that the sole reason for taking this pro-active approach is to prevent new HIV transmissions, when we know that it also has the potential to improve the health of people living with HIV.

We are beginning to see changes around the world and also in Canada. The STOP program in British Columbia has been the most publicized initiative, but there are many other programs and interventions being implemented across the country which are doing some really good things to engage people living with HIV in testing, care and support, and treatment services. These all have the potential to improve health of people living with HIV and prevent new HIV transmissions.

I see that. But, James, we are not really any closer to knowing what the reduction in infections though ART might be in gay and bi men, right? There have been a lot of suggestions that treatment as prevention hasn’t worked in gay/bi communities, but some have also suggested that there is no reason to assume that the reduction in transmission risk through correctly talking ART will be all that much less than the 96% recorded in the heterosexual cohort, at least in a trial setting, in some circumstances. Dr. Rupert  Kaul said to me last month  “Although we don’t have specific data about anal sex from the studies to date, my best guess is that if you are an HIV uninfected man who only practices insertive anal sex (studies say that is about 10% or less of gay men) then if your partner goes on antiretovirals this will have the same protective benefit for you as was seen in the HPTN 052 study.” Do you agree?

At the individual level, there is no reason to think that successful treatment won’t also reduce the risk of HIV transmission for gay and bi men (and others who engage in anal sex). However, it is still not clear if this reduction will be as great as it was for heterosexual couples in the HPTN 052 study (who were mostly engaging in vaginal sex). Fortunately there are some ongoing studies that are trying to answer this question, such as the Opposites Attract study in Australia and the PARTNER and START trials in Europe.

As I mentioned in my previous interview for PositiveLite.com, even if the reduction in risk is the same for gay and bi men, the risk of HIV transmission while on treatment may still be higher for anal sex than for vaginal sex. For example, when not on treatment, research suggests that the risk of HIV transmission through receptive anal sex is up to 20-times higher than vaginal sex. What does this mean for the risk of HIV transmission when the viral load is undetectable? Does a higher HIV transmission risk when not on treatment mean that the risk will also be higher when on treatment? We don’t know and ongoing studies are trying to answer these questions. As for insertive anal sex, most studies suggest the HIV transmission risk when not on treatment is in the same ballpark as for vaginal sex.

While we wait for gaps in the research to be filled, experts are trying to develop a consensus on the research that is available. For example, the British HIV Association (BHIVA) recently released a position statement on the use of antiretroviral therapy to reduce HIV transmission.

At the population level, we still have a lot to learn about how “treatment as prevention” may impact the spread of HIV among gay men. Studies show that HIV transmission rates among some populations of gay men is remaining stable or increasing even though the proportion of people on treatment is increasing. It’s not entirely clear why this is. Some researchers think that recent increases in risk behavior and STI prevalence among some gay men may be offsetting the prevention benefit of antiretroviral treatment. Many researchers also think the majority of HIV transmissions are happening among people who are not aware they have HIV, which suggests that better testing programs are needed.  Moving forward we need to make sure that we don’t look at HIV in isolation and re-evaluate how well we are doing at STI testing, prevention and treatment work and at meeting the sexual health needs of gay men.

One aspect of treatment as prevention is that people are offered treatment immediately on diagnosis, irrespective of their CD4 count.  This is certainly in line with US treatment guidelines and in fact is a practice followed to some extent north of the border.  How universal is this in Canada and if not universal, why not?

Recently, the major treatment guidelines in the United States, produced by the Department of Health and Human Services (DHHS) and the United States International Antiviral Society (IAS-USA), changed to recommend offering treatment regardless of CD4 count. In Canada, only British Columbia and Quebec have developed treatment guidelines. The guidelines in British Columbia recommend treatment for anyone with a CD4 count below 500 and say treatment should be considered for patients with a CD4 count higher than 500 in certain other situations, such as specific other health conditions or if there is a heightened risk of HIV transmission (that is, if they are in a serodiscordant relationship). Quebec’s guidelines recommend that people with a CD4 count below 350 start therapy. For people with a CD4 count over 350, Quebec’s guidelines say that the decision to recommend treatment should be individualized and based on clinical factors, such as hep C co-infection, how high the viral load is and how fast the CD4 count is declining.

Treatment guidelines area a set of important recommendations that are intended to help doctors provide effective care to people living with HIV. While guidelines often influence doctor’s decisions, they are not rules that must be followed. Ultimately the conversation about starting treatment is one that happens between a doctor and their patient and it will depend on many factors. The recommendation to offer treatment immediately is based on the need to get the discussion started as soon as possible and ensure people living with HIV have the information needed to make an informed choice. Offering treatment is not the same as telling a person to start treatment. The doctor and the person living with HIV will need to consider readiness to start treatment, for example, as well as the benefits and risks of early treatment.

Which brings me to my next question. Treatment as prevention advocates argue that the benefit is not only in reducing infectiousness but in improving health outcomes for people starting ART early. Are there in fact better outcomes when people start treatment early? And what are they?

The treatment guidelines I just mentioned discuss the evidence for their recommendations.

More and more research is showing that even early on in the course of HIV infection the virus can begin to cause long-lasting and permanent changes to certain organs and the way the immune system works.  Research is also showing that uncontrolled HIV replication causes ongoing inflammation which may lead to premature aging of the immune system and accelerated development of age-related conditions such as cardiovascular disease. As we have learned more about the damage uncontrolled HIV replication causes to the body, and the ability of antiretroviral treatment to control HIV replication and partially reverse damage to the immune system and organs, guidelines have moved to recommend earlier and earlier initiation of treatment.

There is evidence that starting treatment before CD4 counts fall below 500 may be beneficial to people living with HIV and there is strong evidence for starting treatment before CD4 counts fall below 350. Although we don’t have definitive evidence that initiating treatment at CD4 counts of higher than 500 improves health outcomes, we do know starting treatment at any CD4 count can raise CD4 levels and slow further declines. Many of us are eagerly anticipating the results of the START study, a large (4,000+ participants) randomized controlled study that will provide a definitive answer to this unanswered question. Results are expected within the next couple years.

I suppose you could argue too that the recent Supreme Court decision that suggested disclosure is required unless condoms and a “low” viral load are present is another argument for going on treatment at the outset of one’s journey with HIV - to avoid ending up in  court. Of course whether that’s the kind of coercion we want to see is another matter.

Anyway, let’s talk about one of the objections to starting treatment on diagnosis.  We hear a lot about the necessity for informed consent, but surely that can be stipulated and the tools provide to make that happen. I mean we use those tools – consent forms, for instance – in clinical trials all the time, no?

It’s important that people living with HIV have constructive and meaningful discussions with their healthcare provider before they make the decision to start treatment. These discussions need to explore their readiness to start treatment, the risks and benefits of initiating treatment and what the evidence does, and does not, tell us. Ultimately the decision needs to rest with the person living with HIV.

The tools we need are those that support the doctor-patient relationship to ensure informed decision-making and treatment readiness. CATIE has developed several of these tools, such as an HIV treatment talking tool (Your Doc Talk), treatment videos (Starting HIV treatment: Personal Stories), A Practical Guide to HIV Drug Treatment, and workshops. Some of these tools are available at http://www.catie.ca/en/starting-treatment.

I want to explore whether talking about treatment as prevention is dangerous in itself.  Could it for instance result in an increase in risk behavior? 

I don’t think talking about treatment as prevention is dangerous and the complexities of this approach means we need more discussion, not less. However, we do need to be careful with how we talk about treatment as prevention and  make sure that we aren’t giving simple answers to complex questions.

Several concerns have been raised about how “treatment as prevention” is promoted and the potential for increased risk behavior is one of them. At the moment it is just that, a potential concern. However, there is some research showing that people who are aware of the prevention benefits of treatment are less likely to report using condoms. I don’t think anyone is saying that this concern means that we shouldn’t be talking about “treatment as prevention”, just that we need to be careful how we talk about it.

One more question about starting treatment early: we haven’t heard much about concerns for side effects issues if people start treatment earlier than they might otherwise have done.  As someone who has suffered from pretty severe peripheral neuropathy from exposure to drugs which later  proved to be toxic in the long term and led to irreversible nerve damage in my feet, is there reason to be concerned about side effects emerging in the long term through lengthened exposure to newer HIV drugs tested only over the short term?

Newer antiretroviral drugs are generally more tolerable and safer than older drugs, but some haven’t been available for a long time so we aren’t really sure about their long-term effects. We always need to be vigilant about side effects and this will continue to be an area of ongoing research. This brings us back to informed consent and the information that needs to be discussed with a person living with HIV before they start treatment. For some people this may mean they don’t want to start treatment, for others the benefits of starting treatment may outweigh the potential risks.

I’m liking how CATIE seem to be taking a proactive role in getting people together from across Canada to talk about treatment as prevention  Can you talk about how CATIE’s role in this work will look like over the next several years.

CATIE is trying to broaden the discussion and facilitate national dialogue on what a range of new developments mean for HIV treatment and prevention programming and policies in Canada. A lot of the focus recently has been on “treatment as prevention”, but this is only one recent advancement with important implications. There have been several others in HIV testing, prevention, care and support, and treatment and we need to reflect on what all of these mean for our front-line response to the HIV epidemic in Canada.

Historically, treatment and prevention have tended to be viewed as separate silos in terms of programming and policies. However, the new developments in the field really emphasize that this division is artificial and that we need to consider the full continuum of HIV prevention, testing/diagnosis, care/support and treatment as mutually reinforcing elements of an effective response that must be integrated in a comprehensive approach.  Also, the prevention and treatment of STIs need to be part of such an approach.

I gather you have already had one meeting - a deliberative dialogue on integrating prevention and treatment, trying to shift towards a Canada-wide consensus on this issue? Did specific outcomes emerge from those discussions?

Last fall we brought together stakeholders from across Canada to discuss the issues raised by recent research, including research on treatment as prevention, and its implications for integrated approaches to HIV treatment and prevention. A meeting report will be available soon on our website. This discussion has helped to inform a number of initiatives CATIE will be undertaking in the next year or so. We will be developing tools for front-line organizations to help them reflect on what this new research might mean for their programming; including a “Planning Roadmap” that provides an integrated framework for program planning and case studies of innovative new programs.

We will also be hosting a national knowledge exchange forum in Toronto on September 17-19, 2013 called “New Science, New Directions in HIV and Hepatitis C”. This forum will bring together front-line workers, program planners, public health workers, people living with HIV and/or hepatitis C, and policy makers from across Canada to share experiences, discuss innovative programs and reflect on what new these new developments mean for our response.

Good work, James, from CATIE and yourself!  Thank you for talking to us. Let’s continue this discussion later . I’m particularly interested to hear your views on new prevention technologies . . .

(Watch for part two of this interview where Bob Leahy asks James Wilton about new prevention technologies.)

About James Wilton: James Wilton is the Project Coordinator of the Biomedical Science of HIV Prevention Project at CATIE. James has an undergraduate degree in Microbiology and Immunology from the University of British Columbia.

This article by Peter Carlyle-Gordge first appeared in The Positive Side, a publication of CATIE.

Une version française est disponible ici. 

Claudia Medina grew up in a rough neighbourhood of Toronto. The only child of a single mother, who emigrated from Bogotá, Colombia, when Claudia was just five, she led a protected life. Her mother sent her to Catholic schools in the safer parts of town because she didn’t want Claudia spending time in their neighbourhood. Change came when Claudia was 15 and landed her first job, at a theatre. “I began to make friends and socialize beyond my sheltered world,” she says.

Claudia became best friends with a young man whom she fell in love with. Shortly after they met, she began attending his Presbyterian church. At age 16, influenced by his religious practices, Claudia became a born-again Christian. Her life plan included marriage, four children, a nice house and a white picket fence.

But Claudia was also a teenager who was discovering her sexuality. “Sex before marriage for me was always wracked with guilt,” she says. “I was young and full of sexual desires, including bisexual ones, but the church had taught me that to act on these without being married was sinful, so I rarely enjoyed sex. The solution was to hide my bisexual desires and to get married.”

Not long after becoming engaged, Claudia began to realize that something wasn’t quite right between her and her fiancé. They were both young and vibrant, yet a sexual spark seemed to be missing and she wondered why they had sex so infrequently. “I started having an affair to avoid the problems my fiancé and I faced in our relationship,” she says, which only compounded her sense of Catholic guilt.

Then, one month before their wedding date, in the middle of a heated argument, Claudia’s fiancé admitted that he had been sleeping with men but wasn’t happy about it and thought it sinful. Claudia knew that if she blew the cover off of this, her mother and family would never let her see him again and she would lose her love and best friend. So she decided to believe her fiancé when he said that he had closed any gay chapters in his life. They married as planned.

AS THEY SETTLED into their new life, Claudia and her husband knew something was still amiss. They decided that having a child might fill the void. In 1993, at age 23, she gave birth to her son. While pregnant, she had been physically sick and suffered from depression. In Latino culture, Claudia says, women are supposed to be strong and carry on regardless. “I felt that I couldn’t reach out to my family because of my depression but also because I wanted to shelter them from my marital problems. And pretending that we had a great family and great life was all a part of fitting in at church.”

“We continued to be active in the church,” she says, “but I slowly began to realize that organized religion had fed me many lies.” Claudia and her husband disclosed their marital secrets to their minister, whose advice was to pray and come to him for counselling. A pivotal moment occurred when she was talking to the minister’s wife: The subject of a lesbian march for Gay Pride Day came up. The minister’s wife was vicious in her views on lesbians, which Claudia did not like. “This so-called Christian woman said that she wouldn’t let a lesbian even eat from her dog’s bowl.”

She joined a support group for women married to bisexual men and was appalled by what some of them put up with to keep their marriage going. One of the women described how her husband of 12 years always went into another room to undress. “When I heard that story,” Claudia reflects, “I realized that nothing we could do was going to change the fact that my husband was attracted to men.” She began to feel that being bisexual was not something that needed to be fixed but something to be embraced.

During her first year as a mother, Claudia was haunted by doubts, depression and illness. Isolated and depressed, Claudia began cutting herself. Gradually, the marriage deteriorated. In April 1994, a combination of ongoing weight loss and concern about being exposed to HIV led Claudia to take an HIV test. The result was positive. “The diagnosis knocked the wind out of me,” she recalls. Claudia urged her husband to get tested; he too was positive. They continued to support each other as friends, but the marriage was over. In 1996 she moved out with her son.

Initially Claudia blamed her ex-husband for her diagnosis, but “my real anger was with myself for being so naive,” she says. “I knew that we could get HIV, but I refused to take off the blinders and recognize that HIV could affect me. Looking back now, I can connect all the factors that contributed to my diagnosis: lack of HIV/AIDS information, my religion, low self-esteem, childhood trauma from seeing violence in my family, and gender power imbalances in the relationships I chose.”

A SEVERE TWO-YEAR BOUT of depression followed her diagnosis. The only thing that kept Claudia going was the need to take care of her young son. She wanted to look after him as well as do a better job of looking after herself.

Keen to give back to the community that had supported her when she was first diagnosed and trying to move beyond her depression, Claudia began volunteering at various AIDS service organizations (ASOs)—with the Speakers Bureau at the Toronto People With AIDS Foundation (PWA), Teresa Group and Positive Youth Outreach.

Her first paid job in the field was at Voices of Positive Women. Claudia later became an employee at PWA and in 2006, she and a friend, community activist Samuel Lopez, established Latinos Positivos, an advocacy organization run for and by HIV-positive Spanish speakers in Toronto. Many of the Latino people living with HIV in Toronto, and elsewhere in Canada, are new immigrants. They often feel isolated, which Claudia says is in part due to the ignorance and prejudice about HIV in the Latino community and a lack of culturally appropriate services. But today things are improving and newcomers come in to Latinos Positivos every week to seek peer support and a sense of community.

Claudia has seen the homophobia that exists in Latin culture from her own family members. “I think the fact that my husband contracted HIV from having sex with men made it harder for my family to forgive him than if he had contracted it through heterosexual sex,” she says. “This homophobia makes it much harder for me to come out to my family as queer.”

To overcome homophobia and HIV-related stigma and discrimination in Latino communities, a lot of education is still needed, Claudia says. In 2008, Latinos Positivos produced Nuestras Caras, Nuestras Historias (Our Faces, Our Stories), a Spanish educational video that features Latino immigrants to Canada who are living with HIV (see “Art Posi+ive: Latino Positivo,” in the Spring/Summer 2010 issue). The six men and women interviewed—Claudia included—tell their stories about living with HIV.

More recently, Claudia also shared her story in the 2012 documentary Positive Women: Exposing Injustice, about how the criminalization of HIV non-disclosure impacts HIV-positive women in Canada. “The issue of criminalization is very important to me,” she says. “I believe that everyone has to take responsibility for the risks they take when having sex, instead of playing the blame game.”

IN 2009, CLAUDIA took on the full-time role of women’s prison program coordinator at PASAN (the Prisoners’ HIV/AIDS Support Action Network). PASAN is an ASO that provides education and support to prisoners and ex-prisoners in Ontario on HIV, hepatitis C and harm reduction. Claudia delivers educational workshops and provides support to women living with HIV in prison. “I love the work I do. The system has let these women down,” she says. In her job, she helps fill a gap in services for women who have been in trouble with the law, who are marginalized because of [societal] attitudes. “I let them know that they are not alone and that someone out there cares about their health and livelihood.”

Claudia has balanced her work in the HIV community with the challenges and joys of being a mom. When her son was three, Claudia tried telling him about HIV, “but he was too young,” she recalls. “When I mentioned that mommy had HIV, his response was ‘Well, I want HIV too, like mommy.’” After her son turned seven, she began to explain more. He wondered, for instance, when she was paralyzed with depression why she wanted to lie on the couch. Those conversations were sometimes difficult, but Claudia thinks it’s important for parents to be open with their children: “We think children are fragile but they are intelligent and often know if something is wrong,” she says. “So you need to talk to them.” It’s also essential, she believes, to reassure them that you’ll be around for a long time yet.

While Claudia still struggles with depression, she feels stronger and more optimistic than ever before. When first diagnosed, she thought she’d be dead by age 40. That didn’t happen; in fact, she only recently started taking HIV meds after being positive for over 18 years. And now, in her early 40s, she likely has another 30 to 40 years ahead of her.

“What I need to stay away from in order to stay alive is stress. I’m always trying to find balance in my life, so I can fully enjoy it. Part of that balance comes with helping others; I, in turn, help myself. I feel more connected with the universe,” she muses. “The more I’ve fought and broken down barriers, the more fulfilled and happy I’ve felt in life.”

Winnipegger Peter Carlyle-Gordge is a former writer for Macleans, Time Canada and The Financial Post. He has also worked as a CBC Radio broadcaster and producer and is a former UK correspondent for the Toronto Star. In the 1980s he was president of the Village Clinic (now Nine Circles Community Health Centre), a key player in the HIV epidemic in Manitoba.

Photograph by Michelle Gibson

This article by CATIE’s Sean Hosein first appeared on the CATIE website here.

Une version française est disponible ici.

Potent combination anti-HIV therapy (commonly called ART or HAART) has greatly reduced deaths from AIDS-related infections in Canada and other high-income countries. The improvements in health brought about by ART are likely to lead to several decades of increased survival for a young HIV-positive person who starts therapy today and who remains engaged in his/her care and treatment.

Issues remain

Viruses and other germs disturb the immune system, causing activation and inflammation. Such responses by the immune system can be useful when it is initially responding to an infection. However, because HIV becomes a chronic infection and causes long-lasting changes to the immune system, the associated inflammation incited by this virus is only partially dampened by ART. Persistent low-level inflammation may affect the health of key organ systems such as the heart and blood vessels, bones, liver, kidneys and so on. It is therefore important that HIV-positive people, even those who are stable on ART, continue to see their doctors and receive regular medical care, physical exams, blood tests and other assessments, so that any psycho-social or medical conditions that arise can be quickly identified and managed.

Valuable databases

In Canada and other high-income countries, thousands of HIV-positive people participate in observational databases. These databases collect health-related information for many years and store them in a confidential manner. Analyses can then be done by researchers seeking to identify trends or changes in the health of many HIV-positive people. Observational databases have been used to examine what happens to people over the long term, examining outcomes such as overall health, the occurrence of specific illnesses or conditions, and survival. Observational HIV databases, because of the length of time they can monitor participants, have proven to be a valuable source of information that randomized clinical trials, because of their relatively short duration, cannot generally provide.

NA-ACCORD

Researchers in Canada and the U.S. have collaborated to form a giant database called the NA-ACCORD.

When participants initially entered the NA-ACCORD, they saw their doctor at least twice a year. However, in its latest publication, the NA-ACCORD team focused on HIV-positive participants who, after entry to the database, did not appear to be fully engaged with their HIV care. Specifically, the researchers sought data on participants who had infrequent laboratory tests—that is, waiting more than one year to see a physician to request such testing. For this analysis, the researchers examined data collected between January 2000 and December 2008 from 61,438 participants. The data were collected from the following places:

Canada

• Alberta
• British Columbia
• Québec 

 U.S.

• Alabama
• California
• Colorado
• Florida
• Georgia
• Illinois
• Maryland
• Michigan
• Missouri
• New York
• North Carolina
• Ohio
• Oregon
• Pennsylvania
• Tennessee
• Texas
• Washington
• Washington, DC 

Results 

According to the researchers, about 25% of participants had what was called “incomplete retention” or “out of care” episodes (not visiting their doctor to incite referral to a laboratory for blood testing at least once within a 12-month period) at their local clinics. This figure is substantial, representing roughly 15,000 HIV-positive people.

Participants with one or more of the following factors or characteristics were more likely to be out of care:

• injected street drugs
• had not taken ART
• had been under medical care for longer
• were Black  

Results—Trends in time

Over time, the overall proportion of participants who were not engaged in regular (at least once yearly) visits to their doctor fell from nearly 40% in 2000 to 18% in 2008.

Among Canadian participants, the figures were as follows:

• year 2000 – 24% were not in regular care
• year 2008 – 19% were not in regular care 

The reason for the increase in lab tests (and visits to doctors) over time was not clear from the present study.

Understanding the results

The findings from the NA-ACCORD should be seen as an overview of what is happening to a clinic’s population. The results cannot give a precise account of what is happening at the level of an individual. It is possible that some patients stopped visiting their doctors because they moved further away from the clinic or changed doctors. However, these reasons cannot account for the vast majority of participants who have not seen a doctor for at least a year and did not obtain laboratory monitoring in that time.

Populations and individuals

The NA-ACCORD’s findings suggest that some people who injected street drugs were more likely than others to have intermittent care. This may indicate that barriers to care exist for this population. People with low incomes also likely face barriers to care.

Examples of barriers faced by drug users and people with low incomes may include the following:

• difficulty interacting with a complex medical-health system
• costs associated with clinic visits (such as transportation)
• fees associated with the cost of insurance for drugs
• fees associated with the dispensing of prescription medicines 

Most people who inject street drugs need comprehensive assistance to (initially) stabilize their addiction and, later, to overcome it. Support for their overall mental health is also likely needed. Such interventions at the individual level require commitment and building trusting relationships and they take time. At the level of a clinic, interventions with drug users often are most successful when the help of a multidisciplinary team is involved.

The NA-ACCORD’s findings can be used by individual clinics to search their own databases for patients, particularly people who inject drugs, who do not see their doctor at least once a year and therefore do not get sufficient care. Such clinics can then embark on efforts to recall such individuals to the clinic for care and treatment and to investigate the reasons for insufficient contact with the medical-health system.

Clinics need more resources

If each clinic had only a handful of people who received irregular care, recalling such patients and interviewing them about their issues would not be a major problem. However, if the number of patients not in regular care becomes large, clinics will need additional funds to not only re-engage patients but also to provide the services that are needed by people trying to recover from substance use.

Furthermore, in different parts of Canada and the U.S., clinic populations are different, so there may be a need for the creation of new services, intensification of existing services, and outreach. For instance, Canadian research has found that in the Prairie and Pacific regions, Aboriginal people who are HIV positive may also inject street drugs. Care and engagement of Aboriginal people and getting them to trust the medical-health system will require cooperation with local Aboriginal organizations as well as groups and agencies that provide services for drug users.

Not just about care

If healthcare authorities put more funding toward engaging a significant portion of HIV-positive people in regular care and treatment and addressing issues such as substance use, patients can be helped onto the path of not only improving their immune systems but also their psychological sense of well-being. Keeping people on treatment and in care also has other benefits, such as the following:

• It helps to prevent patients from developing life-threatening infections. Such infections are extremely costly for the emergency and infectious disease departments of hospitals to treat.
• It helps Canada and other high-income countries move toward the goal of reducing the onward spread of HIV. At the level of a large population, such as in a region, there are likely to be fewer HIV transmissions from people taking ART. Moreover, people who are in care and on treatment can be counselled about taking steps to further lower transmission risks to their partners. This also helps to reduce future costs to the system. 

Looking ahead, funding agencies and regional authorities should be aware that research will need to be targeted at specific regions in Canada and in the U.S. in order to understand the needs of different clinic populations and how to retain them in care.

—Sean R. Hosein

REFERENCES:

 1. Rebeiro P, Althoff KN, Buchacz K, et al. Retention among North American HIV-infected persons in clinical care, 2000-2008. Journal of Acquired Immune Deficiency Syndromes. 2013; in press.

 2. Herbeuval JP, Nilsson J, Boasso A, et al. HAART reduces death ligand but not death receptors in lymphoid tissue of HIV-infected patients and simian immunodeficiency virus-infected macaques. AIDS. 2009 Jan 2;23(1):35-40.

 3. Boasso A, Hardy AW, Anderson SA, et al. HIV-induced type I interferon and tryptophan catabolism drive T cell dysfunction despite phenotypic activation. PLoS One. 2008 Aug 13;3(8):e2961.

 4. Appay V, Sauce D. Immune activation and inflammation in HIV-1 infection: cause and consequences. Journal of Pathology. 2008 Jan;214(2):231-41.

 5. Holtgrave DR, Hall HI, Wehrmeyer L, et al. Costs, consequences and feasibility of strategies for achieving the goals of the National HIV/AIDS strategy in the United States: a closing window for success? AIDS & Behavior. 2012 Aug;16(6):1365-72.

 6. Hall HI, Holtgrave DR, Maulsby C. HIV transmission rates from persons living with HIV who are aware and unaware of their infection. AIDS. 2012 Apr 24;26(7):893-6.

 7. Lemstra M, Rogers M, Thompson A, et al. Risk indicators associated with injection drug use in the Aboriginal population. AIDS Care. 2012 Nov;24(11):1416-24.

 8. Spittal PM, Pearce ME, Chavoshi N, et al. The Cedar Project: high incidence of HCV infections in a longitudinal study of young Aboriginal people who use drugs in two Canadian cities. BioMed Central Public Health. 2012 Aug 9;12:632.

 9. Charlebois A, Lee L, Cooper E, et al. Factors associated with HCV antiviral treatment uptake among participants of a community-based HCV programme for marginalized patients. Journal of Viral Hepatitis. 2012 Dec;19(12):836-42.

 10. Thompson LH, Sochocki M, Friesen T, et al. Medical ward admissions among HIV-positive patients in Winnipeg, Canada, 2003-10. International Journal of STD and AIDS. 2012 Apr;23(4):287-8.

 11. Gustafson R, Montaner J, Sibbald B, et al. Seek and treat to optimize HIV and AIDS prevention. Canadian Medical Association Journal. 2012; in press.

 12. McAllister J, Beardsworth G, Lavie E, et al. Financial stress is associated with reduced treatment adherence in HIV-infected adults in a resource-rich setting. HIV Medicine. 2012; in press.

 13. Roumie CL. The doughnut hole: it’s about medication adherence. Annals of Internal Medicine. 2012 Jun 5;156(11):834-5.

 14. Sanyal C, Ingram EL, Sketris IS, et al. Coping strategies used by patients infected with hepatitis C virus who are facing medication costs. Canadian Journal of Hospital Pharmacy. 2011 Mar;64(2):131-40.

 15. Dimova RB, Zeremski M, Jacobson IM, et al. Determinants of hepatitis C virus treatment completion and efficacy in drug users assessed by meta-analysis. Clinical Infectious Diseases. 2013; in press.

This article first appeared on the CATIE website here.

Une version française est disponible ici. 

Many AIDS service organizations (ASOs) in Canada are committed to the greater and more meaningful involvement of people living with HIV (GIPA and MIPA) and the empowerment of people living with HIV. One manifestation of this commitment is the proliferation of “capacity building” and “leadership” programs for people living with HIV.

While such programs play a critical role in building the self-esteem of people with HIV/AIDS (PHAs) and empowering them as community leaders, many PHAs seem to have hit a “glass ceiling” in capacity-building initiatives. Many have completed all of the leadership programs available to them yet express a desire to continue to learn and grow through the guidance of those who are willing to share their experience and expertise. Such need for ongoing mentorship has also been identified through various research studies and community-planning think tanks.

In response to these emerging trends in capacity building, the Committee for Accessible AIDS Treatment (CAAT)—a Toronto-based coalition of HIV-affected individuals and organizations—took leadership to engage multiple community agency partners to create the Legacy project. The Legacy Project is CAAT’s initiative to build on existing capacity-building programs and provide PHAs with an ever-expanding network of mentors to facilitate a continuous, ongoing exchange of knowledge and resources.

The Legacy Project engages PHAs and their allies as “mentors.” Legacy builds structured mentorship relationships between mentors and PHA mentees to facilitate the establishing and working toward life goals, including more effective involvement in volunteerism, employment and/or pursuit of academic studies. The program begins with an orientation open to mentee candidates (PHAs who have completed “capacity building” trainings available in Toronto) and mentor candidates (PHAs and their allies who have transferable skills and experience). At the initial orientation, mentors and mentees are matched up to begin identifying goals and working out terms of how they will work together to achieve them.

Mentees who have achieved their initial goal may return to the Legacy Project to be partnered with a different mentor to work on another goal. In some cases, a mentee may be paired with multiple mentors to work on different goals simultaneously. Depending on their skills and experience, participants in the program who are PHAs may shift between roles as mentee and mentor or serve as mentor to a mentee while being mentored by someone else in the program.

For example, a mentee may participate in the program initially for guidance in exploring plans to pursue academic studies. While working with a mentor on that goal, she may be paired up with another mentor for guidance in working out how to balance her employment and community volunteerism priorities. This same mentee may have advanced artistic skills, meanwhile, which she may share by serving as mentor to another participant in the program looking to explore that discipline.  

PHA graduates of the program are also invited to return to participate as co-facilitators, thereby increasing the sense of agency promoted by the program. Whenever possible, opportunities for internships are created with partner agencies to provide placement for program participants.

The Legacy Project has established a broad network of mentors and mentees to engage in ongoing community learning and sharing. In addition to the initial orientation session and meetings of mentor/mentee pairs, the Legacy Project operates additional meetings on an ongoing basis to bring together participants in a workshop-style setting; these meetings build and sustain the sense of community among participants and encourage the ongoing exchange and sharing of lived experience, knowledge and information. These “reflective practice sessions” are opportunities for Legacy participants to reflect and address emerging issues in their mentoring relationships, learn further skills, share ideas for improving the program, and form additional connections with other mentors/mentees in the program.

Legacy also organizes group mentoring activities to bring participants with common interests together to further share skills and lessons learned in these areas. Group mentoring sessions have ranged from baking bread to learning about social media to sharing concerns on parenting.

The Legacy Project is one example of an innovative approach to creating a sense of community, building capacity and strengthening connections among PHAs. For more detailed information on programs that strive to bring PHAs together to share resources and build connections, see Sharing Together for Life and Weekend Wellness Retreats.

For more information on The Legacy Project, please contact:

Korata Komane, Legacy Project Coordinator

Committee for Accessible AIDS Treatment

c/o Regent Park Community Health Centre

465 Dundas Street East

Toronto, ON, M5A 2B2

 416-364-2261 ext 2318  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

(PositiveLite.com says: Please also refer to the Ontario AIDS Network's leadership training program, the  Positive Leadership Development Institute; details available here.)