Len Tooley is a 31-year old, sexually active, HIV-negative gay guy who lives in downtown Toronto, where he works as a gay men's health promoter, HIV educator, tester and counsellor. As a way of helping him stay HIV-negative, his family doctor has prescribed him Truvada as a pre-exposure prophylaxis (PrEP). 

In the first part of his interview with me, which we published last week, Len and I talked about what motivated his decision to go on PrEP. This week, he discusses the conversations he had with his family doctor about PrEP, his experience of actually taking Truvada every day and how he feels about asking his drug insurance plan to cover its cost.

****** 

John: Len, as you said last week in the first part of our interview, PrEP has been approved for use in the U.S. However Health Canada hasn’t yet followed suit. As I said in my introduction to this series of interviews, though, some physicians in Canada are prescribing it “off-label” for that purpose. How easy was it for you to satisfy your family doctor that it was okay for him to prescribe it for you? 

Len: To be honest, John, I was in a very unique situation that facilitated the process. First of all, I actually have a family doctor – and many people don’t. Secondly, he’s not only a gay family physician but he also has a huge number of HIV-positive patients. I’m lucky to be in this position because I’ve been volunteering and working in the HIV sector for a long time, and eventually found this doctor through friends. So my doctor already knew about PrEP; I didn’t need to educate him about the research showing its effectiveness. 

It’s also my job to know a lot about the science and real-world implications of PrEP, and through my work I’ve read a great deal about many aspects of PrEP, so I had a good idea about what I was getting into. I was prepared to answer any questions he had, and I knew that I was a good candidate for it. 

John: What were some of the questions your doctor had for you? 

Len: It took about four appointments for me to actually get the prescription from my doctor. The first time I mentioned the idea he told me that before we considered it, we’d have to have a lengthy discussion about what was going through my mind when I decided not to use condoms. I told him that I wished it was that simple (I’m an HIV counsellor after all), that it wasn’t as simple as a ‘yes or no’ decision, and that I could guarantee him I was trying my absolute hardest to have perfectly safe sex. I just wasn’t succeeding perfectly. 

At the second appointment (I was there for something else) I again brought up the idea of PrEP. This time he was still a bit hesitant, and told me that if he was going to prescribe PrEP I was going to have to get blood tests to test my kidney and liver functions and make sure I was HIV-negative, and then, depending on those results, we could talk about it more. I agreed, he gave me the test requisition, and that day I went to a lab and got my blood work done. 

Once I knew my blood work results had arrived, I scheduled another appointment and saw my doctor. He confirmed that I was still HIV-negative and that all my kidney and liver function tests were okay. I was pretty nervous and excited. He asked me what I’d do if I experienced the side effects of the medication. I told him that I knew that only about 5% of people in studies of the drug had reported side effects, so it wasn’t too likely, but that if I did have those side effects I’d reconsider staying on it if they didn’t go away and became intolerable. Then I told him that I knew there could be longer-term side effects, but that right now it was probably better for me to go on Truvada temporarily while I feel I’m at risk for HIV, than get HIV and have to take that drug, or other drugs, for the rest of my life. 

John: Was your doctor satisfied with your answers? 

Len: Yes, because he turned to his computer, pressed a few buttons, and his printer started whirring. He took the print-out (my prescription) and handed it to me and reminded me that even though I was taking PrEP I still needed to use condoms. 

John: When did you start taking Truvada as PrEP? 

Len: I took it the day before I started my winter holidays! So, mid-December. I wanted to start at this time just in case I noticed side effects, so I had some time to relax and deal with anything that may come. 

John: And did you experience any side effects? 

Len: You know what, John, I haven’t. At least none that I’ve noticed. It’s interesting, though, because I was so prepared for side effects that I almost convinced myself I was having some. I initially incorrectly thought that Truvada could cause really vivid dreams, so when I had a few intense dreams shortly into starting the medication I thought it must be a side effect. I learned later though that Truvada doesn’t cause vivid dreams, and that it was just a coincidence. I think I’d convinced myself I was experiencing them because I was expecting to notice at least some side effects! 

I’m about to go to the lab to get another blood test so that my doctor can see if my liver and kidneys are still working well, so I can’t speak to the “unseen” side effects. But I feel totally fine. 

John: That’s good to hear, Len. Certainly, the anti-HIV drugs that we have today are more easily tolerated than previous generations of such drugs. But being on PrEP is not as simple as popping a pill every day, is it? 

Len: It is, and it isn’t. To be honest, “popping a pill every day” is not as simple as it sounds. I know that for PrEP to be its most effective, you not only have to take it every day but every day at exactly the same time. Otherwise the levels of the drug in your body fluctuate too much and you can be more vulnerable to HIV infection. This means that no matter what I’m doing – in a meeting, at my computer, on my bike, whatever – every day at the same time I need to have my pill on me and remember to take it. Just the other day I realized that I had left my pill at home (I was at work). It was a stressful moment! I had to bike home as fast as I could to make sure I was able to take my pill. 

John: I’ve had those panic moments, too, when I forgot to take my meds with me when I left home in the morning. Clearly, it’s not as straightforward as some may think. You also need to get regular blood work done, don’t you? 

Len: Yes.  Moving forward I know that I’ll need to get blood tests every three months to make sure my liver and kidneys are functioning well and also to confirm I’m still HIV-negative. 

John: Why do you need to have repeated HIV tests if you’re on anti-HIV meds? 

Len: Because if I do happen to contract HIV while I’m on PrEP (which I feel is not too likely), the virus can quickly adapt and become resistant to the drugs I’m taking. Then they might be of no benefit to me as a drug I can take to manage the infection. So regular HIV tests are important to help prevent that from happening. 

John: On top of which, a month’s supply of Truvada is expensive! 

Len: You’re telling me! Truvada is expensive. Maddeningly so, to be honest. My eyes almost popped out of my head when I realized that it costs $871.21 each month. I’m very, very lucky to have drug coverage, and Truvada is included. If I didn’t have access to a drug plan, I’d never be able to afford the drug on my own. 

John: How do you feel about the cost of a month’s supply of Truvada and asking your drug plan to cover it?  

Len: John, I’ve struggled a lot with that question. Am I worth $871.21 per month? Or rather than me, is me staying HIV-negative worth $871.21 per month? What does it mean to put a price on your security of mind and long-term health? It was a struggle. But there were a few things that led me to decide that it was worth it. 

First of all, this is the basic concept behind drug coverage. Everyone pays a little bit into a larger pool regardless of their health status, so that when people need a prescription they have access to it. So I’ve been paying into drug plans for a long time, in case I would need access to a certain drug. And my doctor and I agreed that in order to protect my health, this drug was important. That’s what drug plans are for. Other people might use their drug plans to prevent complications of atherosclerosis or high cholesterol, or high blood pressure. Or to prevent heart burn. The list goes on and on. I didn’t feel that preventing HIV infection was really all that different. 

The second realization I had was that no matter which way you look at it, it would always be less expensive for everyone for me to stay HIV-negative than for me to become HIV-positive. Truvada is one prescription (comprised of two anti-HIV drugs), and that’s it. If I were to get HIV, I would have to take at least one other HIV drug on top of that. And this often starts a chain reaction of other medications and vitamins to help ensure overall health. I felt that the cost to everyone (including myself) for PrEP now was probably worth preventing the long-term costs that would come with getting HIV. 

Next week, in the third and final part of his interview with PositiveLite.com, Len responds to critics of HIV-negative guys like him who decide that PrEP is right for them and why he decided to talk publicly about being one of those negative guys on PrEP. 

You can read the first part of Len’s interview here.

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 

In July 2012, the U.S. Food and Drug Administration (FDA) approved the use of Truvada (a fixed dose combination in one tablet of emtricitabine and tenofovir) to reduce the risk of HIV infection in uninfected individuals who are at high risk of HIV infection and who may engage in sexual activity with HIV-infected partners. This use of an anti-HIV drug to prevent infection is known as pre-exposure prophylaxis (PrEP). 

PrEP is considered by most observers to be a major breakthrough in the war against HIV transmission. In Canada, however, there’s no indication that we’ll follow the American lead any time soon. Experts, and indeed many in the HIV community, argue about the desirability of doing so. 

However, some Canadian physicians are already prescribing Truvada “off-label” as PrEP for some of their patients. Len Tooley is one patient of such a physician. He agreed to talk to PositiveLite.com about his decision to go on PrEP. 

In this series of three interviews, Len and I talk about his decision to access PrEP, his experience starting to take PrEP and how he responds to critics of negative guys like him who decide that PrEP is right for them. 

******* 

John McCullagh: Len, thanks for agreeing to talk with PositiveLite.com about your decision to go on PrEP. Before we get started, can you tell us a little bit about yourself? 

Len Tooley: Sure, John. I’m a 31-year-old queer guy who lives, loves, cooks, cycles, and works in downtown Toronto. I also work professionally in the HIV sector as an HIV-negative guy. In that regard I work as the coordinator of community health promotion programming at CATIE, Canada’s national HIV and Hepatitis C knowledge broker. At CATIE I coordinate a number of projects related to gay men’s sexual health. In my spare time – if you could call it that — I also work part-time as an HIV and STI tester and counsellor through Hassle Free Clinic, a sexual health clinic in downtown Toronto. 

I mention what I do professionally because it’s given me the opportunity to learn a huge amount about HIV and gay men’s health that has really informed my decision to access PrEP. That being said, I should make it clear that I decided to do this interview with you as an individual telling my own story – I’m not speaking on behalf of either organization but rather as someone who is affected by HIV. 

John: Thank you for that clarification, Len. In that regard, I should also mention that I’m a member of CATIE’s board of directors. So let’s start with the obvious question: Why did you make the decision to go on PrEP? 

Len: First and foremost, John, to prevent HIV infection. I have a tricky relationship with HIV. I know that given the proper treatment, medical care and social supports it has become a pretty manageable illness that doesn't have to drastically change someone's life. Of course, that's not at all to say that being HIV-positive is easy or without complications, but it is different from even a decade ago. By different I mean in terms of the treatments available and long-term health outcomes — especially if the infection is caught and treated early. So, while I know that getting HIV doesn’t have to be the end of the world, I also know that it’s probably easier and better for my body overall to stay HIV-negative. 

As I mentioned, I’m a relatively young, sexually active queer guy who has sex with gay men. And I'm doing so in downtown Toronto, which has the highest prevalence of HIV among gay men of any urban centre in Canada — as high as 23% according to the best sources we have to date. To me this means that it's almost certain that I have had, and will have, sex with HIV-positive guys. As I've learned through providing HIV testing, and as more and more evidence is showing us, when you’re having sex in an HIV epidemic almost everything you do sexually — even low risk activities like giving oral sex without a condom — has an added risk for HIV infection. 

John: “Having sex in an epidemic”. That’s an interesting way of expressing the risk we gay guys run when we have sex. Can you talk a bit more about that? 

Len: Sure. One of the main reasons I say that is because of the way we know HIV moves among men who have sex with men (MSM). Studies show that anywhere from 50-75% of new HIV infections among MSM in Canada every year are driven by people whose HIV infection is also recent (what we call early or acute HIV infection). That's because when someone is newly infected with HIV they're less likely to know about their status. At the same time, they have the highest levels of the HIV virus in their body fluids because their body has not yet developed any ability to control the virus at all. 

So I know that even if the guy I'm having sex with says he’s HIV negative, there’s always a chance that he's not only positive, but that he also recently got HIV so he’s very likely to pass it on as well. It's in these 'perfect storm' scenarios that lower-risk activities (which, we must remember, are not 'no risk' activities) are much more likely to enable HIV transmission. In other words I know that even if I’m having 'low-risk' sex, I’m more likely to get HIV than most people. 

John: For almost thirty years now, most gay men have known that the most reliable way to prevent HIV transmission, even in an epidemic, is for us to wear condoms, at least when we have anal sex. So why did you decide to take PrEP too? Isn’t this a little like wearing a belt and suspenders? 

Len: Ha! To be honest with you, John, I’m not perfect – even if I wish I was. And I have to admit, I haven’t had perfect condom use throughout my life. I’ve managed to stay HIV-negative for quite a while, but this was partly a combination of “responsible” condom use and – when “not-so-responsible” – luck. Those moments when I had done something that I knew might put me at higher risk often led to a lot of anxiety. Not constant, overwhelming anxiety, but one that prevented me from feeling good (meaning, guilt free and shameless) about the awesome sex that I had had. 

John: So taking PrEP would give you added protection from HIV on those occasions when you might find yourself in such a situation? 

Len: Exactly. Working in the HIV sector I’m fortunate enough to be aware of the newest advancements and research going into HIV treatment and prevention. I’d been reading about PrEP and how, even if it’s not a ‘guarantee,’ it’s been shown to be quite effective. But it hasn’t been approved in Canada so it seemed like an impossible, or at least unlikely, tool. Early last November, during one of my more anxiety-filled days thinking about what I might have done since my last HIV test that might have exposed me (even though “I should know better”), I thought – wouldn’t it be great to have PrEP? And then I realized it was totally possible. That all I needed to do was to convince my doctor to prescribe me the drug. My confidence was bolstered by the fact that the U.S. FDA has already developed guidelines for prescribing PrEP to gay men. I read a really helpful resource by Project Inform that helped me make the decision too. 

But beyond my own risk, there’s another set of reasons for me to choose to access PrEP: the positive guys in my life that I have had, or will have, relationships and/or sex with. From doing testing and knowing a lot of positive guys, I know that for many of them passing HIV on to someone they’re having sex with is something they want to avoid at all costs. Sometimes this leads them to only dating or having sex with other poz guys. For me, PrEP is a way that I can not only take responsibility for my own sexual health (and the sexual health of my community), but it’s also something I can do to help reduce the fears and anxieties that some poz guys have around transmitting HIV to someone else. 

I also understand that it can be really hard for some poz guys to disclose their status to negative guys, and I hope that my being on PrEP can make those guys feel more comfortable disclosing their status to me. I also hope to help create an opportunity for more honest and open dialogue about our safer sex decisions. 

Next week, in part two of this interview, Len talks about the conversations he and his family doctor had about going on PrEP and his experience of actually taking Truvada as a way to help him stay HIV-negative.

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.)

This article first appeared on the website of Pacific AIDS Network here. Republished with permisision of the author. Folllow PAN on twitter at @PAN_CBR 

Moving research on new “biomedical” HIV prevention technologies into practice

By James Wilton

Recent research findings have improved our understanding of HIV transmission and prevention and could change the landscape of our response to the HIV epidemic. In the past few years, several new HIV prevention approaches, such as post-exposure prophylaxis (PEP), pre-exposure prophylaxis (PrEP), and the use of antiretroviral treatment as prevention, have been found to reduce the risk of HIV transmission. These new strategies are often referred to as new “biomedical” HIV prevention technologies, or NPTs.

If moved into practice in an appropriate way, these new approaches could have a dramatic impact on the HIV epidemic in Canada and other parts of the world. However, translating this research into a reduction in new HIV infections within the communities we work with will be challenging. Community-based organizations (CBOs) – through programming and research – will have an important role to play in understanding these challenges, overcoming them, and effectively implementing these approaches.

Engaging people and communities in new HIV prevention approaches

At the most basic level, we know that the more people in a population who use a specific strategy, the more HIV transmissions they can potentially prevent. The number of people who use a strategy, often referred to as uptake or adoption, will depend on a number of factors, such as awareness (do people know about it?), acceptability (do people want to use it?) and availability (can people access and afford the technology if they want to use it?).

The impact of these strategies will also depend on “who” in a population uses them. More HIV transmissions will be prevented if the strategies are adopted by individuals who are at highest risk of HIV transmission, such as those who don’t use condoms consistently or share injection drug use equipment.

Focusing uptake among those at highest risk may be important for another reason. There is a concern that some people using these new approaches may feel a false sense of security and increase their risk behaviour, such as using fewer condoms or having sex with more partners (a concept known as risk compensation or behavioural disinhibition). Since none of these new strategies are 100% protective, this could potentially offset some of the benefit of NPTs and limit the number of HIV infections they prevent. However, the potential impact of risk compensation will be lower when used by people who are already at higher risk of HIV transmission.

Community-based organizations will play a key role in engaging individuals and communities and facilitating the appropriate uptake of these technologies. This will involve:

• Community mobilization to build readiness for new approaches and address barriers that may affect their acceptability, such as stigma and social, cultural, and political norms.
• Outreach and educational campaigns to improve awareness of these strategies, including information on who they are appropriate for and where they can be accessed, particularly among those at highest risk for HIV transmission.
• Accurate risk assessments for those who are interested in using these approaches and, if appropriate, referral to locations where they can be accessed.
• Community planning to ensure NPTs are provided in a way that respects human rights and supports informed decision making by the people using them.
• Advocacy to ensure the technologies are available and affordable.

Community-based research (CBR) will be essential to gain a better understanding of the acceptability, awareness and availability of these technologies in the community, the barriers to adopting them, and the characteristics of those who are using them.

Packaging new approaches with other strategies and supports

Among those who do use these strategies, what will influence the effectiveness of NPTs at reducing HIV incidence?

How consistently and correctly these strategies are used will be important. Research shows that these new approaches – such as post-exposure prophylaxis (PEP), pre-exposure prophylaxis (PrEP), and the use of antiretroviral treatment as prevention – are much less protective if not used consistently. Correct use means different things for different strategies. However, as none of these new approaches are 100% protective, correct use generally means that these new approaches are combined with, instead of replace, existing HIV prevention strategies.

Furthermore, the presence of certain biological factors that are known to increase HIV risk, such as sexually transmitted infections (STIs), may reduce the effectiveness of these new approaches. Therefore, correct use of these strategies also means combining them with STI prevention, testing, and treatment services.

In research studies and clinical trials, these NPTs have been credited with dramatic reductions in HIV incidence and this has generated a lot of excitement. For example, the HPTN 052 study found that antiretroviral treatment reduced HIV incidence among heterosexual serodiscordant couples by 96%.

However, we may not see the same large reductions in incidence in populations using these strategies in the “real world,” outside of a clinical trial. In clinical trial settings, participants are provided with ongoing prevention and support services including free condoms, HIV testing, STI testing and treatment, and intensive adherence and risk-reduction counselling. All of these services help to create “ideal” conditions that can maximize the impact of an HIV prevention strategy on HIV incidence. These new approaches may be less effective outside of a clinical trial if they are not provided in combination with these additional support services.

Community-based organizations will play an important role in packaging new prevention approaches with additional strategies and supports. This will include:

• Adherence support to help people integrate these strategies into their daily lives and use them consistently.
• Education on how to use the strategies correctly, including information on their advantages and disadvantages compared to existing approaches and the factors that may reduce their effectiveness.
• HIV prevention and risk-reduction counselling to help people understand their HIV transmission risk while they are using a prevention technology and to help them adopt additional HIV and STI prevention strategies. This will also need to include linkages and referrals to other services needed by people at risk of HIV infection and transmission.

Again, community-based research can play an important role in providing  insight into how people are using these strategies in the “real world” and the barriers to using these strategies consistently and correctly.

The role of CBOs and CBR in the changing HIV prevention landscape

The HIV prevention landscape is changing and CBOs have an important role to play in ensuring NPTs are used by the “right” people, at the “right” time, in the “right” context, and in the “right” way.

However, there is an increasing concern that the introduction of these technologies, particularly those based on antiretrovirals, will “medicalize” HIV prevention and reduce the role of CBOs in the response to the HIV epidemic. This is because most “biomedical” NPTs can only be obtained from a healthcare provider and need to be combined with ongoing medical services, such as laboratory and clinical monitoring, HIV testing (in the case of PEP and PrEP), and STI testing and treatment. Therefore, the worry is that these new “biomedical” approaches will shift the setting of HIV prevention from the community to the clinic.

In reality, it’s clear that these new prevention approaches are not exclusively “biomedical” and need to be packaged with several non-clinical services in order to prevent risk compensation, promote their appropriate uptake and sustained use, and ensure they are effective outside of a clinical trial setting. These are services that many healthcare providers do not have the time, knowledge, or expertise to provide effectively and, therefore, represent a gap that CBOs need to fill.

Moving forward

Dr. Kevin Fenton of the Centers for Disease Control and Prevention (CDC) in the United States gave a presentation at the 2012 International AIDS Conference in Washington where he discussed the implications of this new research for CBOs. He called upon CBOs to adapt to the changing HIV prevention landscape by:

• Learning new skills (improving their science base and understanding of clinical trial results).
• Developing new clinical alliances (improving their ties with organizations and institutions where these prevention technologies can be obtained).
• Providing new clinical and prevention services (offering HIV and STI testing, adherence support, and risk-reduction support).
• Promoting the uptake and correct use of these technologies (developing accurate, tailored, context-specific information; ensuring messages reach their target populations through a variety of different mechanisms, such as peer–peer outreach).

James Wilton is the Coordinator of CATIE’s Biomedical Science of HIV Prevention Project, he can be reached at This email address is being protected from spambots. You need JavaScript enabled to view it. .

This article first appeared on the CATIE website here.

Une version française est disponible ici. 

The widespread availability of 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. ART improves the health of HIV-positive people by reducing the production of HIV and allowing the immune system to begin to repair itself. The power of ART is such that researchers and doctors increasingly expect that a young adult diagnosed today who begins ART and has minimal pre-existing health conditions will have a near-normal life span. Faced with this good news, more HIV-positive women are considering having children.

Healthy babies

An essential part of preventing mother-to-child transmission is HIV testing for women who are thinking of having a baby or who are pregnant.

Although HIV can be transmitted from mother to child (this is called vertical transmission), the risk of transmission can be reduced to less than 1% with the following steps:

• prenatal counselling and care
• taking ART during pregnancy so that viral load is as low as possible
• having intravenous AZT (zidovudine, Retrovir) during delivery of the baby
• Caesarian section for delivery (when medically necessary)
• a short course of anti-HIV medicines for the baby after birth
• use of formula rather than breastfeeding (HIV can be transmitted via breastfeeding)
• not pre-chewing food for the baby when solids are introduced. Adults who have both HIV and oral infections can inadvertently cause a small amount of blood to leak and be present in the food that they chew. This blood can contain HIV and if the pre-chewed food is fed to the infant, it could possibly transmit HIV.

Without ART, the risk of vertical transmission can be at least 26%.

Testing

In 1997, researchers in Ontario estimated that rates of HIV among pregnant women were greater than they were in the late 1980s. After consulting with stakeholders about this situation, the Ontario Ministry of Health recommended that beginning in January 1999 counselling and HIV testing be offered to pregnant women. The recommended approach to this testing was called “opt-in,” which meant that HIV testing was only done if requested by a physician and where counselling and informed consent for such testing were first obtained.

Promoting the policy

To help educate health care providers about the new testing policy, the Ontario Ministry of Health supported the following interventions that were carried out over several years:

• physicians received pamphlets, posters and new lab testing forms
• physicians who ordered lab testing for hepatitis B virus, syphilis or rubella but not HIV were sent a memo with the test results reminding them that they could also order tests for HIV
• public health units regularly received letters about the importance of prenatal HIV testing
• physician bulletins published articles encouraging doctors to offer prenatal HIV testing
• the Toronto Department of Public Health trained health care workers about HIV testing
• posters and pamphlets about HIV testing aimed at women of childbearing age were sent to doctors’ offices
• a media campaign to increase awareness of HIV in pregnancy targeted to different ethno-cultural groups

Researchers at the University of Toronto, the Hospital for Sick Children in Toronto and Public Health Ontario recently collaborated to assess trends in HIV testing among pregnant women in Ontario, reviewing data collected between January 1999 and December 2010.

Key findings

Overall, HIV testing among pregnant women significantly increased over the 11 years of the study, as follows:

• 1999 – 40% of pregnant women were tested for HIV
• 2010 – 98% of pregnant women were tested for HIV

When researchers assessed testing rates shortly after specific periods of time when certain strategies—such as encouraging physicians to offer HIV testing to pregnant women—were implemented, they found that such strategies subsequently resulted in greater rates of testing.

In general, HIV testing rates were lower among older women compared to younger women.

Rates of HIV testing among pregnant women in Ontario varied, with some public health units reporting rates of 92% and others 99%.

During the study period, 455 pregnant women tested positive for HIV. Of these, nearly 60% were diagnosed with HIV for the first time because of prenatal testing.

Pregnant women aged 30 to 34 years were more likely to be HIV positive than women in other age groups.

Bear in mind

As Ontario has a universal medical insurance program, the findings from this study may be useful for other places that have a similar health insurance system, such as Australia and Western Europe.

The Ontario prenatal HIV testing program has helped to prevent many cases of vertical transmission.

The study group noted that further research is needed in Ontario (and likely the rest of Canada) to understand why some pregnant women at high risk for HIV are not tested. The group stated that it is possible that some of these women may not have received prenatal care because “they arrived in Canada shortly before delivery or for other reasons,” and so they did not receive screening for HIV. Whatever the reason(s) for not being tested, such research will be important if Ontario is to keep the number of HIV-positive babies born in this province as low as possible.

Resources

Society of Obstetricians and Gynaecologists of Canada

Canadian HIV Pregnancy Planning Guidelines

Recommendations for Use of Antiretroviral Drugs in Pregnant HIV-1-Infected Women for Maternal Health and Interventions to Reduce Perinatal HIV Transmission in the United States

Information for Women who are Diagnosed with HIV during Pregnancy

Pregnancy Planning Information for HIV+ Women and Their Partners

Information for HIV+ New Moms

Pregnancy Planning Information for HIV+ Men and Their Partners

Acknowledgement

We thank Robert Remis, MD, for his research assistance, helpful discussion and expert review.

 —Sean R. Hosein

REFERENCES:

Remis RS, Merid MF, Palmer RW, et al. High uptake of HIV testing in pregnant women in Ontario, Canada. PLoS One. 2012;7(11):e48077.

Lohse N, Hansen AB, Pedersen G, et al. Survival of persons with and without HIV infection in Denmark, 1995-2005. Annals of Internal Medicine. 2007 Jan 16;146(2):87-95.

Lohse N, Hansen AB, Gerstoft J, et al. Improved survival in HIV-infected persons: consequences and perspectives. Journal of Antimicrobial Chemotherapy. 2007 Sep;60(3):461-3.

Loufty MR, Margolese S, Money DM, et al. Canadian HIV Pregnancy Planning Guidelines. Journal of Obstetrics and Gynaecology Canada. 2012 Jun;34(6):575-90.

Panel on Treatment of HIV-Infected Pregnant Women and Prevention of Perinatal Transmission. Recommendations for Use of Antiretroviral Drugs in Pregnant HIV-1-Infected Women for Maternal Health and Interventions to Reduce Perinatal HIV Transmission in the United States. Sep. 14, 2011; pp 1-207.

Loutfy M, Raboud J, Wong J, et al. High prevalence of unintended pregnancies in HIV-positive women of reproductive age in Ontario, Canada: a retrospective study. HIV Medicine. 2012 Feb;13(2):107-17.

Centers for Disease Control and Prevention (CDC). Premastication of food by caregivers of HIV-exposed children—nine U.S. sites, 2009-2010. Morbidity and Mortality Weekly Reports. 2011 Mar 11;60(9):273-5.

Gaur AH, Dominguez KL, Kalish ML, et al. Practice of feeding premasticated food to infants: a potential risk factor for HIV transmission. Pediatrics. 2009 Aug;124(2):658-66.

Ivy W 3rd, Dominguez KL, Rakhmania NY, et al. Premastication as a route of pediatric HIV transmission: case-control and cross-sectional investigations. Journal of Acquired Immune Deficiency Syndromes. 2012 Feb 1;59(2):207-12.