This article first appeared in Prevention in Focus , Spring 2011 edition, a publication of CATIE. 

Une version française est disponible ici. 

We spoke to four people with very different perspectives on PrEP.

• Dr. Mark Tyndall—Professor of Medicine, University of Ottawa
• Dr. Peter A. Newman—Associate Professor, Faculty of Social Work, University of Toronto Canada Research Chair in Health and Social Justice
• Jody Jollimore—Program Manager, Health Initiative for Men, Vancouver, British Columbia
• Shari Margolese—Community Consultant, Women and HIV Research Program, Toronto, Ontario

Dr. Mark Tyndall

Do you think PrEP has a role to play in Canada?

I would say “no.” I think we need to be open to all new prevention strategies, whether its technologies or behaviours, but in terms of what should be a priority in Canada, I don’t think PrEP will play much of a role.

The number of new infections just aren’t that high in Canada. You would have to treat a lot of people to prevent an infection. I couldn’t imagine putting people who are at a relatively low risk of infection on continuous antiretroviral medications. It’s just not necessary and the risks of the medications would outweigh the benefits.

With the prevention strategies we have now, we can actually keep HIV transmission to relatively low levels. I deal with the highest risk people in Vancouver and despite this I see very few new infections using the interventions that we now have. Give injecting drug users enough clean needles and they don’t get infected, give sex workers and gay men condoms and they don’t get infected.

It's true that some people aren’t doing what they could do to prevent HIV infection, but offering them another technology opens the door to a lot of problems and unintended consequences. Once one person starts taking a pill and having unprotected sex, others who are using condoms are going to want to take a pill so they can have unprotected sex too. If people are going from a form of prevention that is highly effective to prevention that is 60 or 70% effective, that is potentially going to put even more people at risk of infection.

If a gay man tells me that he will never use a condom and he will continue to have unprotected sex with anonymous partners, it seems counter-intuitive to me to give him a pill. He already has highly effective tools at hand to prevent exposure and we need to focus on removing the barriers that prevent him from using these tools. I don’t think we want to create a situation where taking a pill is how we prevent HIV infection because I think it will fail. We have not even discussed the problems with adherence, side-effects, drug resistance and the cost of PrEP.

Don’t get me wrong. I don’t think that we have figured out the optimal ways to deliver HIV prevention, or that specific groups are not in need of renewed prevention efforts, or that innovative strategies should not be developed, it’s just that I don’t see PrEP being a major addition to HIV prevention initiatives in Canada.

What can Canada do to prepare for the implementation of PrEP?

The epidemic among gay men in some Canadian cities is continuing because we are not doing a good enough job of reaching those at highest risk of infection. I think we need to keep working with the tools that we have and find more innovative ways to reach people at risk of infection and understand what drives their risk behaviour. I think we have let that slip.

We aren’t even prepared to give people post-exposure prophylaxis (PEP) and I think that’s an even more important debate. In British Columbia this has been an ongoing battle. If the exposure is the result of consensual sex, no matter how big the risk of infection is, the government won’t pay for PEP.

What will the role of ASOs be during the implementation of PrEP?

Staff at ASOs will be the ones who are asked many of the questions. They are going to have a big role in educating people about the potential downside of PrEP and helping to prevent the unintended consequences. My general feeling from those working in ASOs is that this is not some great new prevention tool and has the real potential to undermine other prevention efforts if not explained properly.

Dr. Peter A. Newman

Do you think PrEP has a role to play in Canada?

PrEP is going to play a role in Canada regardless of what you, me or people at the policy-level think. It exists and people may already be using it. Some gay men in the United States have engaged in self-administering PrEP for years and it’s likely to be a similar situation in Canada.

I would feel much more comfortable if different stakeholders in Canada recognize that PrEP is going to play a role, whether we like it or not, and become engaged in discussing the possible ramifications. PrEP is going to be much safer and more effective if it is delivered with as much education and strategizing as possible—by the people who represent the populations who will use it, people who have experience working with those populations, and hopefully social scientists as well.

What can Canada do to prepare for the implementation of PrEP?

Barriers in accessing culturally competent and appropriate care exist for many health conditions in Canada and will likely impact the use of any new HIV prevention technologies that become available. It will be important to use the possible introduction of PrEP as an opportunity to bring attention to the barriers that prevent disenfranchised populations from accessing medical care. We need to develop strategies to overcome these challenges and improve access to healthcare where inequalities exist.

A lot of individuals from marginalized populations have not had good experiences with the healthcare system and this may discourage them from accessing PrEP and using it correctly. We need more specialized health clinics that serve marginalized populations that may be at risk for HIV infection and could benefit from new HIV prevention options.

What will the role of social science be in the implementation of PrEP?

There is no HIV prevention technology that can reasonably ignore human behaviour, human decision-making, relationships, and other messy things like emotions. It doesn’t exist. We know people make mistakes and human behaviour isn’t perfect. There are going to be particular challenges with the uptake and use of a technology that is partially protective. We have to look at any new prevention technology in the light of real-world human behaviour and human decision-making.

Social and behavioral science needs to be involved from the get-go, from the clinical trial stage through to the roll-out and beyond. We can potentially learn a lot about possible behavioural challenges from clinical trials but it’s very difficult to predict exactly what’s going to happen when the technology is rolled out. Social and behavioural monitoring during the rollout of PrEP will be important to guide implementation changes and change the course of action if needed. Unfortunately, social and behavioural science tends to be given a lower priority than biomedical science until things start to go wrong.

Front-line service providers will need to be included in social science research. They have intimate knowledge of what’s happening on the ground and have a good idea of what might happen and how it might happen. All this information needs to be to be factored into the development of implementation policy and strategy.

Jody Jollimore

Do you think PrEP has a role to play in Canada?

Absolutely. I think PrEP is shaping up to be a very important tool in the risk reduction toolkit. To me, the main benefit PrEP offers is choice. The more prevention options that we can make available, to gay men and other people at risk of infection, the better.

Thirty years into the epidemic, condoms are still the only tool that gay men have for preventing HIV and its high time we found more biomedical prevention options. The need is there. We recently did a Man-Count survey as part of the national M-track study in Canada, and a large percentage of gay men reported the use of serosorting and strategic positioning as a risk reduction method. These are unproven strategies but men are employing them based on the little information that they have available.

PrEP could be an option for people who are putting themselves in sexual situations that are high risk and are not using condoms consistently. If people rely on PrEP, and decrease their use of condoms, then it’s not going to be effective, but I think we have to give people a certain level of trust and assume that when given accurate information about risk, and the various hazards associated with PrEP (or with using condoms or serosorting or strategic positioning), that people will find the best option that is appropriate for them.

What can Canada do to prepare for the implementation of PrEP?

Before we implement another risk reduction strategy such as PrEP, we have a lot work to do in re-educating the people in Canada about what HIV means today. The last major widespread education campaign was done in the late 80s, early 90s, and a lot of research has happened over the last two decades that we haven’t updated people on. People are unclear about viral load, acute HIV infection, post-exposure prophylaxis, and testing technologies and how they can be used to reduce HIV transmission.

We also need to get people to understand what “risk” is. We can’t still have guys thinking that a handjob is risky and have other people thinking unprotected anal sex is not. We really need to create a common understanding of what risk is before we can introduce partially protective tools, such as PrEP, that reduce your risk.

What will the role of front-line service providers be in the implementation of PrEP?

Community organizations will have a huge role to play in ensuring adherence and reminding PrEP users that this is a pill-a-day option and that pill needs to be taken for it to work. We also need to be there to ensure there are still condoms, lube, and as much information as possible so that people at risk of infection know that PrEP is not their only option.

Shari Margolese

Do you think PrEP has a role to play in Canada?

I don’t see PrEP as being a widespread option to be distributed to the general public but it may play a role under certain circumstances and indications. There is a lot of interest in the use of PrEP among serodiscordant couples who want to conceive and this is relevant to our work at the Women and HIV Research Program at the Women’s College Research Institute [at Women’s College Hospital].

Currently, serodiscordant couples have several options available to them in order to conceive and these options can significantly reduce or eliminate the risk of HIV transmission between partners. Techniques such as sperm-washing (if the man is HIV-positive) and assisted reproduction are available at a limited number of fertility clinics in Canada. Access and cost are significant barriers to the use of these conception options, particularly for couples from smaller cities and rural areas in Canada.

I could see PrEP playing a role for serodiscordant couples who do not have access to fertility clinics, cannot afford fertility services, or want to conceive through unprotected sex for cultural or personal reasons. Access and cost may be less of an issue for PrEP because it could be obtained from wherever the HIV-positive partner is getting their HIV medications. PrEP may also be more affordable but the cost will depend on how long the medications need to be taken for before and after intercourse.

Serodiscordant couples trying to conceive through unprotected sex would need to use PrEP in combination with other strategies; it’s not going to be a tool that will be used independently of others. We know that serodiscordant couples are doing their own research and finding that the risk of transmission is reduced if the HIV-positive partner has an undetectable viral load, both partners are free of other sexually transmitted infections, and intercourse is timed to occur during ovulation (so the number of exposures are reduced). For these couples, PrEP may further reduce the risk of HIV transmission but there is limited data on the use of PrEP in this context. 

What could Canada do to better prepare for the implementation of PrEP?

The role of PrEP was discussed while developing the National HIV Pregnancy Planning Guidelines, but we felt there wasn’t enough evidence that was transferable to heterosexual populations to determine whether or not PrEP would be advantageous in conception. We need more evidence before we can make recommendations on the use of PrEP and I think Canada could play a role in the research.

There are some studies that are currently ongoing, or in the planning stages, in other parts of the world and they are looking at the use of PrEP for two days before and two days after intercourse. I think we need to work collaboratively with the groups conducting this research and contribute to the evidence. Once we have enough evidence that is transferable to the Canadian context, we will need to develop guidelines that include prescribing information, counselling protocols, and other factors that need to be in place before initiating PrEP.

What role will ASOs play in the implementation of PrEP?

ASOs will play an important role in community outreach and education. If the evidence shows that PrEP could be a useful tool in pregnancy planning, then we would need to add it to existing information that is found in educational materials and workshops for serodiscordant couples. There could also be an advocacy role to inform public policy on PrEP and also improve access to existing conception services.

For more detailed information on pre-exposure prophylaxis, see Preparing for pre-exposure prophylaxis. 

See also a link to CATIE  PrEP resources: 

See also CATIE News by Sean Hosein about adherence and PrEP trial results.

Photo: © Palto | Dreamstime.com

For our previous, coverage please refer to the "related stories" links below.

Despite numerous appeals, and providing many examples of the disparity in service provision between the east and west of the county, Hertfordshire County Council are still seemingly reluctant to address this.

We have repeatedly drawn attention to the plight of PLWHIV in Hertfordshire and have gained fantastic levels of support from some of the most influential people in the land. However it seems that Hertfordshire County Council are not paying any attention.

Lord Norman Fowler, former Secretary of State for Health, and architect of the original 1980’s Don’t Die of Ignorance public awareness campaign, said in a statement released to support our Healthy Futures fundraising appeal;

 “I fully support the work by the Crescent in St Albans for people living with HIV, their partners, families and friends. Over the last nine months I have been chairman of a Select Committee of the House of Lords on HIV in the United Kingdom. This is a crucial health issue and organisations like The Crescent totally deserve our support.”

Lord Rennard, former Liberal Democrat party chairman said;

“... This is a model organisation run by the people it helps, where those affected have a direct influence on how, and where, they receive the much needed help and support to enable them to manage their condition.”

The Bishop of St Albans, The Right Revd Dr Alan Smith said;

 “With its great local reputation The Crescent is outstanding in offering a much needed and appreciated service to the community”

These are just some of the messages of support we have received, and continue to gain almost weekly. Council  have reduced the contract length for the other county service provider by 12 months, with a view to retendering later this year for a contract to start in April 2013. This is very good news as at least things may improve next year, however that is 11 months away and we are still supporting 300 plus people with no funding at all.

We have seen a five-fold increase in people seeking HIV testing compared with the same period last year. We continue to receive new referrals from various health and social care agencies, plus people seeking help, advice, training and support on a daily basis.

Whilst we have been the recipient of some very generous donations, without serious regular investment ultimately we will close. Our campaign is going well from a fundraising perspective, with lots in the pipeline. However should one of the pledges be delayed, or worse still, not arrive, this would have serious implications for our ability to provide care for PLWHIV.

We are still continuing our campaign to educate and inform people about HIV and to fight stigma, and as part of this have members who we are supporting in the Stand Tall Get Snapped campaign. This is an exhibition in London’s Soho area this year to mark the 30^th anniversary of the death of Terrence Higgins and the official recognition of HIV as an epidemic. It aims to show that HIV is not just a white gay male issue and that it can affect anyone, of any age, gender or sexual orientation.

Hertfordshire County Council can, quite easily, avoid causing unnecessary stress and hardship to those living with HIV in Hertfordshire by reinstating some funding to The Crescent now.

It had been suggested that it is merely a case of economics, and that savings had to be made, but this is simply not true. Hertfordshire County Council received £508,000 this current year from central government specifically for HIV support, and next year this will increase too, yet are spending but a fraction of this.

We appreciate that savings need to be made, but do they need to be this extensive? We don’t think so, there is enough money available to fund both services as was the case prior to 2011, and still not spend all of the allocated funding.

The original suggestion in late 2010 was that we would need to make a 20 – 25% saving for the forthcoming year, which we were more than happy to do, in fact we were already making such savings and, as a result of no funding for our Hertfordshire operation, continue to do.

Unfortunately in early 2011 the decision was taken not to reduce funding by 25% to the two organisations together, but to cut one and transfer the majority of our funding to the one provider. The whole point of their being two agencies in opposite sides of this large, and very affluent, county was to ensure that there was equal access for all.

The geography and transport links in Hertfordshire mean that it is very difficult to get across county east to west. The situation now is that we have an agency in the east trying to serve both sides of the county. If this was possible, there would be no need for us, but it’s not.

We hope that now a new Chief Executive has been appointed at the County Council a more balanced view will be taken of the support needs of PLWHIV in Hertfordshire. We are calling on Mr Wood to see sense.  Please Mr Wood show that you have more interest in this crucial health issue, Lord Fowler and so many others feel it is essential, so will Hertfordshire County Council continue to stand alone?

A lot has been written about how we process risk lately – how we take risks all the time based on a calculation of what we know, what might happen, and what are the likely chances of that happening. 

It’s being increasingly pointed out that we make risk calculations every time we cross the road or board an airplane.  So do people who cross Niagara Falls on a tightrope.  So do people who have sex, with or without condoms.

The HIV landscape is changing around us, so that talking about risk has never been hotter. In part that reflects our ability to treat HIV often quite successfully. Often routine suppression of  viral load, the Swiss statement and then HPTN 052 which followed  have all necessitated thinking about the risk of transmission, and how that risk is processed and communicated, for instance. Things are different now.

The concept that we all take risks, everyday in our lives and “is sex any different?”  is being widely talked about.  Here’s what one of our writers, Michael Bouldin, said recently ”It’s not that we don’t know what constitutes risky behavior; it’s that it’s simply not possible to always avoid it, or in a given moment even desirable. Walking a red light can get you killed; it can also get you to a job interview on time.”

Megan DePutter, another PositiveLite.com writer and the Poz Prevention coordinator  at an Ontario ASO, recently developed this theme further: “The risk of an accident likely trumps the risk of acquiring HIV by unprotected sex. The number of car accidents per year far exceeds HIV infections, yet people get into their cars every day, buckle their seatbelt as a matter of harm reduction, and go ahead with their day without thinking, calculating, or questioning these risks, let alone judging others who also put themselves at risk by being on the road.  But many of these HIV negative car drivers would not carry this same approach to sero-discordant sex, even though it could be argued that a car accident could potentially have worse consequences than HIV acquisition and that missing out on a great love or even great sex would be a tremendous loss.”

Knowing what the risk is.

The recognition that we all take risks and why is HIV any different – has until recently seldom been reflected in HIV prevention messaging, and has arguably been its biggest failing. But let’s be clear.  We sexual health “consumers” DO need to know if there is a risk and, better still, what that risk is. In fact let’s talk odds, let’s talk percentages, let’s talk probabilities. Whether we also need to know  - or be told - HOW to process that risk, e.g. “wear a condom every time” is  a moot point.  Perhaps a more effective approach is talk about choices, as some service providers are doing. More on that later.

But choices are at the heart of every sexual deed, aren’t they?.Sometimes we make them in advance – carry a condom in our pocket and use it, come what may.  Sometimes they are made in the heat of the moment.   Sex is a messy business, not at all rational when it comes down to it and whatever factual information we have and decisions made about how we will act on it, all this can of course, be tossed aside when the lights go out.

Sometimes decisions to take risk can become more deliberate.  Tim Dean in his book “Unlimited Intimacy, Reflections on the Subculture of Barebacking” says of the decision-making process in the barebacking subculture ”after two decades of safe-sex education, erotic sex among gay men has become organized and deliberate, not just accidental.”

There is of course much literature to suggest that at least a little bit of risk taking is a good thing in life.  Goethe said “The dangers of life are infinite, and among them is safety.”  General Patton, of all people said  “Take calculated risks. That is quite different from being rash.”  And let’s hear from T. S. Elliott “Only those who will risk going too far can possibly find out how far it is possible to go.”  So clearly risk is part of our culture, and in many circumstances, lauded.

The interventions

Against this propensity for us all to take risk in some form or another we have a panoply of interventions designed  so that we don’t. Let’s look first at the traditional approach to HIV prevention, for instance, which seems to maximize risk and thus maximize the need for precautions. Where does that approach come from?  Here’s what one HIV specialist thinks about “maximalist precautions” and why he recommends them. Bernard Hirschel, Head of HIV, Geneva University Hospital said this. "Recommending safer sex  . . practices for all HIV- infected patients, even those with  (an undetectable viral load) is indeed advisable. Imagine, as is likely, these recommendations are not followed. Then, if something bad happens, the onus is on the patient. As physicians, we should always try to shift responsibility for mishaps to our patients, and one of the means of doing so is issuing maximalist precautions. It makes our practice so much easier. “

One hopes he is being flippant or sarcastic or both, but I don’t think he is.  The truth is the practice of medicine inevitability involves liability issues. That fact is seldom talked about or expressed in writing but the idea of "maximalist precautions” underlies almost everything about how medicine, including sexual heath interventions,  is practiced today.

Again, we do need to know the worst that can happen.  If there is a remote possibility, a “significant risk” or even a likelihood of harm to ourselves or others, we need to hear about that, for sure.

Research and risk

Researchers sometimes goes beyond the facts to provide warnings which also reflect a “maximalist precautions” approach to their findings. For example, look at  my article on levels of the HIV virus in men’s semen in  PositiveLite.com here.  This is how the risk was described  in a recent study  I quoted there. “Low seminal HIV titers could potentially pose a transmission risk in MSM, who are highly susceptible to HIV infection. . . Until more information on transmission risk in MSM is available,” the authors write, “it would be prudent to advise sexually active HIV-infected MSM to use condoms and other risk-reduction strategies throughout all stages of HIV disease regardless of HIV treatment status.”

One could pose the question “Is it the role of research to tell people what to do? “ Or is it to provide factual information on which people – service providers and sexual health information consumers - can make their own decisions. Similarly, is it the role of ASOs and other sexual health service providers to tell people what to do, or to provide information so that those who consult them can make informed choices?

Condom messaging

In the past, of course, we’ve been told what to do A LOT.  Here are some examples.

Trojan Commercial: "Use a condom every Time" 

(US) National HIV/STI  Control & Prevention Program: "Use a Condom Every Time" 

FDA 2010 Brochure “A person who takes part in risky sexual behavior should always use a condom.” 

www.positive.org: “Always use a condom.  If you're going to suck your partner's dick (blowjob), put a condom on it first.” 

Messaging like this, with its inherent failure to recognize  the realities of human behaviours, or how and why we process risk, runs the risk of undermining credibility.

Informed choices

This maximalist approach - always do all that you can to protect yourself, all the time - is inevitably starting to wear thin.  Increasingly, service providers are recognizing that messaging has to be much more nuanced, recognizing risk is about the choices we make in life – and in the bedroom .  In the gay men’s sexual health movement, for example, the concept of resiliency brought to the fore by Amy Herrick et al in Resilience as an Untapped Resource in Behavioral Intervention Design for Gay Men is being built on. In particular prevention messages building on gay men’s perceived strengths, which include the ability to make informed choices, are becoming increasingly common.

An example of that approach can be seen in thesexyouwant.ca    resource from Ontario’s Gay Men’s Sexual Health Alliance. Their website says this. “We talk about condoms, and also how to reduce your risk in other ways. . . . We just give you the facts and let you make your own decisions. We all accept different levels of risk every day, and that’s okay. What matters is that we have enough information to be comfortable with the risks we take.”

In any event, we appear to be moving in the right direction.  But just how much do we know about how, when and why we take risks?  Search on the net and you’ll find some research on that, but much less on why we take risks  - sometimes quite  big  risks - when it comes to sexual behaviour, when we might otherwise be risk – averse, for instance. There is even less research relating to specific populations. So clearly more needs to be done there to make prevention work solidly founded on a knowledge of complex human behaviours.

But ultimately, whatever we do can be thwarted and its healthy, I think , to recognize that. Humans take risks, period. And as Denis Waitley said “Life is inherently risky. There is only one big risk you should avoid at all costs, and that is the risk of doing nothing. “

Viietnam-born Amazin Lethi is a fitness expert, boxing coach & NLP/Life Coach, former natural competitive bodybuilder, philanthropist, actress, TV and film producer/director, author, entertainment personality, entrepreneur and global campaigner in the fight against HIV/AIDS in the Asian community.

Bob Leahy: Hi Amazin. Thank you for talking to PositiveLite.com You have an unusual name.  May I call you Amazin?

Amazin Lethi: Yes that is fine you can call me Amazin or Lethi, my name is Vietnamese, Ghanaian.

You were born in Vietnam, weren’t you? You mention on your website that you come from a humble beginning.  Do you want to talk about that?

I came from an orphanage in Saigon, a very simple beginning. For me it’s a metaphor to life that we all start from a humble place and by keeping that humble place inside of me it reminds me to remain grounded, to remember that there is more to life than self and that happiness is not generated by what is tangible in our life or what we can give to our self but by what we can give and do for others.

So where is home now?

I’m a citizen of the world, we truly live now in a global village. Home is my laptop on a plane. I spend most of my time jumping on planes between New York to Europe and back to Asia. I love to travel and tend to get itchy feet if I stay in one place too long.

I don’t think I’ve interviewed anybody with so much going on in their life.  You’ve got your charity work, your entertainment career, your books, your bodybuilding background, fitness – and of course there is the activism and the HIV work in particular.  Let’s start with the bodybuilding, though. Tell me how that started.

I’ve always had quite an eclectic career. I started weight training when I was six which was at the time and even now quite an unusual choice for an Asian woman. I’ve always been an athlete of some sort. Initially I wanted to change my physical appearance and gain an edge in my other sports, particularly martial arts. Weight training became a natural progression for me and once I saw how it changed my physique and the strength I acquired I was hooked! It also gave me a unique platform in the entertainment industry as it was unheard of  - an Asian female bodybuilder in the entertainment industry, particularly in the Vietnamese community.

Are you still into bodybuilding?

Bodybuilding, health and fitness is still a big part of my life. From becoming a competitive natural bodybuilder as a teenager I used it as a stepping stone to become a qualified strength and boxing coach and a published health and fitness author.

Sport, particularly for children and young adults, gives you a direction and different kind of mindset. It’s also a great way to integrate and bring communities together. I’m using my background in sport to develop programs with my foundation to help integrate HIV-positive children and young adults back into society and it’s also a great way to educate the community about social and health issues.

Nowadays you describe yourself as a “hardcore gym junkie”.  Tell me what that means in practice. How much time do you spend in the gym, for instance?

I think right now I’m a laidback gym junkie if there is such a term. Fitness is part of my life it’s automatic like brushing my teeth. I’ve been involved in the bodybuilding industry for so long I can’t recall ever not being apart of it. On top of all my other sporting activities I still train in the gym at least 4 times a week.

The bodybuilding, if I understand it, became your springboard in to the entertainment and modelling business. How did that happen and was it easy?

A young Asian female bodybuilder will always stand out in the crowd, I didn’t fit the stereotype of the norm. An Asian person in the entertainment industry at times is not easy because it’s trying to break the mould of the stereotype of either the geisha girl or Kung Fu actor. Initially the industry didn’t know how to place me as I was an Asian female martial artist muscular bodybuilder. The community didn’t know what to think as it wasn’t a usual career path for an Asian, particularly a woman, but my uniqueness became my asset. I always believe sometimes the choices you make at that time it can be hard to see if they are the right ones, but in time they will show you that you were on the right track.

Such an unusual career path! It sounds as if you like to break stereotypes with what you do at almost every level.  Where does that come from?

Ever since I could remember I always had a clear idea of my direction, I’d always been a kinda misfit that had big ambitions. It was only when I started bodybuilding that it really truly helped me believe that if I put my mind to something I could transform. I had no Asian role models and even now the entertainment industry still doesn’t have a huge Asian presence as other communities. So I had to create my own path and you tend to evolve in a way without the boundaries and restrictions if you had all these role models around you that said you had to conform in a certain way. This is innately who I am I just generally tend to swim the other way from everyone else.

You’ve said. “When it comes to the entertainment and fitness industry, Asians are terribly under-represented.” Do you want to talk about why that is?

As a community we are under-represented across the board not just in the entertainment and fitness industry but also in social and health activism. There are so many reasons and it varies from different countries. I’ve worked all around the world and can see how communities view us from the stereotype or we’re not seen as marketable or significant enough to culturally we tend to lean towards business, medicine and finance. To fully address this issue we must first address how we are viewed by society and also educated the media to not keep portraying us in the stereotype light, as this just reinforces it in the community.

This is the same for our lack of discussion openly about health and social issues, we must first address our cultural beliefs, traditions and mindset before we can end the social stigma and discrimination.

Tell me about your activism.  Clearly you take that very seriously. You’ve taken a particular interest in HIV.  Why HIV? Where does that interest come from?

My activism comes from ending the social stigma and discrimination that people face on a daily basis whether they have a health condition or different in some way. Asian people face double in some cases triple discrimination. It’s a ‘Double Whammy’ for our community. We face discrimination and racism for being Asian and if you have a health condition like HIV or different in some way you face social stigma and another layer of discrimination and then its another story if you happen to be Asian, Gay and HIV-positive that takes the stigma and discrimination you receive daily to a whole new level.

As a health professional I have always been concerned in speaking out about issues that affect the community as it’s only when we talk openly and honestly do we begin to break the silence and normalize the issue.

People ask me all the time why HIV? Why not poverty or clean water? HIV is a silent epidemic in our community and the less we speak about it the worse it gets. It’s just not in our nature culturally to discuss these issues. HIV is the central point to that person’s life. If you provide them with HIV support and care then you in turn also help bring them out of poverty, educate them and provide them with the necessary tools to live independently. Many people in Asia that have HIV are poor so when you give them HIV support you change their entire life, indirectly I’m able to focus on the other issues such as poverty, clean water, ending sex slavery/human trafficking and drug abuse via HIV initiatives.  

Do you find the Asian community has an attitude to HIV that differs from the rest of the world? Is more stigma attached to HIV than in other areas, for instance, do you think?

The attitude towards HIV/AIDS is different because it stems from our cultural beliefs, tradition and values within the Asian community and the lack of open conversation that surrounds HIV/AIDS in our community. In some cases we have clustered HIV/AIDS under a social evil category that sits alongside sex workers, drug users, MSM/LGBT.  We should not try to compare the stigma as all stigma is horrible in its own right regardless how much or how little though the HIV/AIDS stigma is fuelled by lack of education surrounding the condition and how it’s contracted. The lack of knowledge in the community of how HIV/AIDS is contracted spreads fear that somehow you can ‘Catch’ it by being in the same room with the person or touching the person which leads to serious consequences for HIV-Positive people such as homelessness and loss of work prospects.

You are currently in Asia, visiting Hong Kong and Vietnam?  Tell me about this trip.

I’m here for my foundation to meet a number of prominent HIV activists and local organizations in Hong Kong and Vietnam as well as to assess which HIV and LGBTQI programs we’d like to implement and support I’m also visiting projects on behalf of Vietnam Relief Services, they are based in Hanoi. Due to my profile in the community I’m always happy to support and raise the profile of other worthwhile causes and organizations such as Vietnam Relief Services. I’m currently helping to support the children at the Binh Luc Orphanage in Hanam via their organization as well as other projects they support.

Many Asian countries, as they move from poor status to middle income, aren’t receiving the funding anymore they require to support the HIV community, which is very worrying. 

Vietnam is one of those countries which has now been classified as a middle income country and doesn’t qualify anymore for the type of funding from some international organizations because it doesn’t meet their criteria anymore as a poor nation. Many of the major organizations have already pulled out of Vietnam. This is a major concern as to how local organizations and groups can then source the necessary funds to support the HIV community. It really becomes a matter of life or death, particularly in rapidly developing nations where funding is becoming scarce.

I just hope by speaking out about the HIV issue in the Asian community that we can gain support from the broader community.  When people think of HIV they always compare the HIV rate in Africa to Asia, then assume because it’s not as high as Africa we don’t need help. Ignoring the issue doesn’t make it go away. In some countries there are few if any HIV statistics from the Asian community. We should be concerned about this. From my time back in Asia I already have a list a mile long of displaced children from HIV, HIV-positive street kids and adults that require immediate support. It doesn’t cost much to support someone in Asia; it’s as little as $10 a month to support an HIV-positive child and in some cases funding isn’t even required, it’s just product and services. I already have 22 HIV-positive teenagers in one program I plan to support in Vietnam and they need 10 refurbished computers to learn IT skills to give them career development skills. They already have volunteer IT teachers waiting to teach them but without computers that’s very difficult. Another program I’d like to support there is 100 children displaced by HIV that would like to have a soccer camp during summer holidays and all they require is a bus, food, water, uniforms and at least 5 volunteer soccer coaches.  It’s important that we allow children to be children to take their mind off HIV and those that have died around them from the condition.

For me it comes down to what life-changing resources can we provide to help an HIV-positive person become financially independent.  I always look at the sustainability of a program that can eventually generate its own income and can become in the long-term independent, though might initially need the support of my foundation to get the program off the ground.  It’s very important that you are there not to make communities dependent on you but to help them become independent.

Tell me about the Amazin Lethi Foundation. Is the Foundation doing work in the HIV sector in particular?

My foundation focuses on the HIV and LGBTQI community. Our mission is to empower people. Engaging with both individuals and communities through education and media initiatives - creating positive change. We focus on fighting against the social stigma and discrimination that marginalizes people, particularly within Asian community.  Because I am Vietnamese it was very important for me to start the HIV initiative in Vietnam and support my own people before moving into neighbouring countries. The eventual aim is to take the HIV initiative across Asia. In the west we are targeting countries that have a high percentage of Asians, such as Canada, America and Australia.  Europe is another region where HIV needs to be addressed. Just recently I was invited to speak at an HIV conference in Italy to highlight HIV in the Asian community.  My foundation is already in discussion to partner with the Italian community on a number of projects that will include HIV.  It’s always important to think globally as to how you can bring different communities together in the fight against HIV. 

I also have an interest in ending obesity in children and human trafficking/sex slavery. We may create specific initiatives in these areas in the future, though for now the focus is on HIV and the LGBTQI community.

I want to know what the real Amazin Lethi is like.  You seem to be an incredibly busy person.  What do you like doing in your down-time?

My days can be very long, sometimes 15 hour-plus days, so in my spare time I really enjoy just switching off with a good book or going to the cinema.

Like to cook?

I enjoy cooking for others and for myself. I’m actually working on some ideas for a cookbook and TV projects.

Tell me something that hardly anybody knows about you.

My secret hobby is DIY. I’ve personally renovated numerous apartments and houses.  I can do nearly everything from flooring, painting, plastering, tiling, electrical work, carpentry and I’ve been known at times to do a bit of plumbing.  My friends find me quite handy.

Amazin, you’ve been a good sport and a great inspiration.  Thank you so much for talking to PositiveLite.com Good luck with your trip in Asia. Can we have another talk with you some time?

Yes definitely. Thank you for supporting my work in the Asian community. 

Find out more about Amazin Lethi on her website and about her Foundation here. 

Follow Amazin Lethi on twitter @amazinlethi

Follow the Amazin Lethi Foundation on twitter @AL_Foundation

Over the past week or so I embarked on my own little experiment. I wanted to know, what does the everyday young person really think about HIV?

There are many ways that this can be done, and I’m sure many have tried before, but I was interested in knowing the first thing from the top of their heads.. the image they would most associate with the virus. To achieve this, I couldn’t be posing anything too thought-provoking, because time to think is really time to audit our response and eventually what we’ll get is the run-off-the-mill, politically correct answer that we see aplenty.

I settled for something straight to the point, and posed the question:

“If I asked you for the first word that comes to mind when I say HIV, what would it be?”

I posed the question to over a hundred people on Facebook and waited until at least 50 of them replied before collating the information.

I kept in mind avoiding approaching the demographic that is known to have special knowledge on the topic, that includes anyone in the field of health and of course the activists (which are really not that many to sift from my friend list, unfortunately). From here, I randomly picked friends between 18-24 years old (categorically, young adults) who as far as I know, are not aware of my HIV status, so that my situation would not have any bearing to their response.

After posting, I played the waiting game, and mulled over the possible responses.

I thought the immediate connotations would be the obvious, like sex, terminal, or even a simple item like a condom. The rational response would be the few who  thought this whole thing was a waste of time and I had just spent over a good hour asking such a silly question because I wouldn’t get anything interesting.

Then came the first response. It read simply, “death.” 

Ok, maybe it was with a ‘lol’ at the end, but I think this takes away the feeling I’m trying to relay here, which is one of utter shock.. lol. My shock was quickly displaced by disappointment, and as I continued to get more responses, it only sunk in further.

I compounded similar words into a singular statistic, meaning any responses with “retribution, karma, wake-up-call, time for a change (obviously some didn’t get the single word part of my question),” which are actual responses I got, would be categorised under ‘retribution.’ 

The results I collated are as follows: 

So, the leading connotation that youth immediately make with HIV? Death. Hardly heartening to see, but it is what it is. The few that follow are'nt much consolation, but at least they’re somewhat factually sound in today’s context, with permanent, contagious and lethal (this meaning deadly - I categorized it separately from ‘death’ because the graph would become overwhelmingly depressing, but because of the choice of words I got, because certain death, or as one respondent put it, ‘funeral’ and a possible death ‘fatal, lethal’ tread thin but different lines), which HIV is still today. The responses I got under sex and unsafe sex (meaning going condom-less), as I previously hypothesized, would be the obvious link to the lay person, are there, though not as immediate as I thought. The cause for my concern are the responses that associate HIV with retribution and even with homosexuals.

Of course, we can look beyond the surface figures for a glimmer of hope. Maybe the responses read death because they were implying that the virus is currently in its own personal wake and not actually, alive and actually awake?

You know, the same way activists in Singapore tried when local statistics reported that homosexual/Men who have Sex with Men(MSM) infections now account for more than half of infections and overtaken heterosexual transmissions for the first time - spin it 360 (and leave fingerprints of good PR training behind) before claiming it to be a victory with the stance that activism has led to greater awareness in gay men which made more MSM men come forward for testing, allowing for greater levels of detection than their heterosexual counterparts. Yay!

I digress though.. I prefer to take some things for face value.

The value in this instance, is saddening. Years after countless drives to teach that HIV/AIDS is now a manageable disease and no longer the death sentence it once was and the prevailing mindshare still stands with death. After all the campaigning with heartfelt images, touching stories, marches and memorials, that they still say that HIV is but retribution for one’s lifestyle choices. Countless reminders over that the virus does not discriminate and there’s still the few who think of it as a gay man’s disease. To add salt to the wound, these are young adults we are talking about, not people from the last generation from whom I’d be less surprised with such a response. If anyone should be educated with information that is relevant today, it is these individuals.

I took a step back and calmed myself over a cuppa and composed myself before brooding over the findings. I figured, rewind my own clock, and ask myself this very question two years back.

This made me more embarrassed at myself than I was upset at the collection of responses I had, because would have honestly, also certainly have said death. HIV was to me, nothing short of dying. It’s actually something I had discussed with a friend before, on that rare occasion we were feeling deep (aka we were with our friend, booze). We were both in unison: we would rather die than get HIV. It was to us a death sentence. Physically, socially and mentally, we deduced from thin air (the failings of mandatory sex education in Singaporean schools is evident here), we would die if we caught it (which at the time we thought was impossible) and would rather take our own lives than have it come to that. Of course, this was the mind of a typical 20-year-old drunk who had spent more time having sex than reading about the dangers it entailed.

This is where I confuse you (and myself) by digressing at my digression, you know, about the taking things for face value thing.

Anyone can embark on a little survey like this, but what do we as activists do when we get the results and not know what to make of it? I say we pose the question we asked others to ourselves, not as we are today, but who we were before, and let that to guide the path you choose to blaze. For me, I’m going focus on where I was previously wrong myself. I think we all have to do that before we start going into a broader context. If the results showed me anything, it was my own reflection of past nonchalance.

What did you get from the results?