My editor asked me to write about the future of prevention. In taking up that challenge, I am discovering that I probably have more questions than answers, but I do have some ideas of the challenges we must meet if we are really going to stop HIV transmission. 

Motivation 

Scary "death" and "doom" messages will not motivate people to take measures to avoid contracting HIV. Fright messages sometimes have short-term effects, but these truly lack credibility in a context where a lot of people (particularly in the gay community) know someone living with HIV and living quite well with treatment. We need to be realistic talking about what it means to live with HIV today. I personally don't look like I'm about to die (not of HIV/AIDS anyway!) and I have a fairly active life, but I wouldn't wish my HIV infection on anyone else. We need to learn how to share our experiences of living with HIV in straightforward, honest ways if we want people to understand why they might not want this virus. 

Risk Assessment 

In all health issues, the quantification of risk is problematic. I have a friend who, in the course of his internship, was sometimes called upon to deliver a prognosis to an ailing patient. "How much time do I have left?" rivalled "What are the chances of the operation not working?" for tops of the unpopularity contest. He was reticent to tell the elderly patient that there was a 4% risk of death in an operation because it was so unlikely to occur and so likely to panic the patient to hear and try to interpret the words. 

How then do we explain that a single act of condomless anal sex with a person with a high viral load might have a transmission rate somewhat less than 1%, but that people still get infected with HIV? I know there has been some degree of reticence to share those percentages of risk because they are so very difficult to wrap our heads around, but that is an attitude that smacks of paternalism. If it is difficult to understand, then our challenge on this point is clear: learn to explain risk in a way that helps people to make informed decisions about their actions. 

A Full Toolbox 

There are many approaches to prevention these days, ranging from motivational counselling all the way to pharmaceutical intervention. We need to figure out which tools work best for which people in which situations. Then we need to be able to make sure that those people have access to the tools they need, understand the strengths and limits of those tools, and know how to use them.

With budgets for prevention stagnant and some new approaches taking up a lot of virtual space, those who make decisions about what to fund might be tempted to put all their eggs in one basket. We have to continue to recognize that there isn't a single approach that will work for all and fight to preserve the diversity of the available tools even as we work to understand them better and to improve them. 

The Pleasure Principle 

Most of the time – if we're lucky – sex is about pleasure. When our prevention messages are peppered with words like "safe" and "secure" or "protection" it shouldn't surprise us that not everyone wants to hear them, or even listen to them. We need to talk more about what to do, and not as much about what not to do. This goes beyond how our messages look (we've learned to make them sexy) right to the core of what they say. 

Since I am given to wild and sometimes inappropriate metaphors, let me just charge headlong into this one: Waterskiing is not all about the life jacket. That life jacket might be an essential tool in the end, depending on how you go about the sport, but the waterskiing is about hanging onto the rope, getting up on the skis (and staying there!), and it's even more about the sun on your face, the wind in your hair and the pure exhilaration of skimming across the water behind a powerboat. We need to focus on that approach when we talk about sex. 

Autonomy 

We need to trust people to make choices for themselves. That means sharing all of the information in the best way to ensure that it is truly understood and letting people determine how they will act on it in their own lives. I would hasten to add that one person's autonomy doesn't trump another's. I'm trying (and probably failing) to make this point not be about disclosure, but if we lived in a world where people wouldn't face unreasonable discrimination after disclosure I would be happy to include it. And when I talk about discrimination, I'm not talking about getting turned down by a potential partner, but about losing a job or not getting one, or about losing all semblance of privacy when the person trusted with the information decides it needs to be shared. 

Back to the autonomy part. People will not necessarily make logical or sensible decisions when it comes to sex and pleasure. We wouldn't be human if we always acted logically and based on the best available evidence. Humans have issues like self-esteem, desires, fears, urges…these all push logic out the nearest window from time to time. Sometimes we make bad choices for ourselves and sometimes we make good ones. Sometimes good and bad are a little difficult to sort out. That doesn't mean that someone else gets a licence to tell me what to do with a willing partner; it means that the prevention challenge is to try to ensure that I have all the information and tools I need to make the right decision for myself, and that my partner has those too. 

I don't know if we'll find the ideal approach to prevention or the means to make sure that the multiple approaches that work the best for now are fully available. I only know that we can't stop trying. One new infection is one too many.

This article by Gus Cairns first appeared on aidsmap.com here.  

About 40% of men who answered a community survey for HIV-positive gay men in the Netherlands said they took their viral load into consideration in deciding whether or not to use condoms. This represents about two-thirds of those who actually did have unprotected sex.

This published paper adds new data to this study’s original conference presentation at the AIDS Impact conference in 2011.

The survey found that consideration of viral load was almost as common when having sex with partners who also had HIV as when having sex with partners of negative or unknown status. Disclosure and discussion of viral load was far more common with HIV-positive partners, whereas viral load was rarely discussed with partners assumed to be HIV negative, remaining purely part of a unilateral decision.

The study also found that this group of HIV-positive men, who, as part of a community consultation panel providing advice to the Netherlands HIV Association (NHA), might be assumed to be well informed on HIV prevention matters, were as a group by no means convinced that undetectable viral load protected them from transmitting HIV to partners. Not surprisingly, the more confident individuals were that this was the case, the more likely they were to take it into account as part of a decision to have condomless sex.

The study

The NHA’s Open Online Panel consists of 517 women and men living with HIV who are contacted on a regular basis by email to ask their opinion on important topics in HIV. In this case just the 212 gay men on the panel were asked to complete an online survey about unprotected sex and consideration of viral load.  

This paper only looked at the answers from the 177 men (85%) who said they had an undetectable viral load. Of these, all but two were on antiretroviral therapy.

Results: unprotected sex

One hundred and twenty (68%) of the 177 had ever had unprotected anal sex since their HIV diagnosis and of these 73 (61%, or 41% of the whole group) did it without a condom the last time they had anal sex. 

The researchers asked respondents if their last sex had been with a casual or a regular partner and of the 73 who’d had unprotected sex last time,  43 (59%) said it was with a casual partner and 30 (41%) with a regular one.

The 73 were also asked the HIV status of the most recent partner and 38 (52%) said they were HIV negative or status unknown and 35 (48%) that they were HIV positive. Unprotected sex partners were more likely to be ‘buddies’ if they were HIV positive (15 casual, 20 buddies) and more likely to be casual meets if they were HIV negative or status unknown (28 casual, 10 buddies); this is what one would expect, as HIV status is usually not discussed until people have reached  a level of trust.

Results: considering viral load

Of the 120 who had ever had unprotected sex since diagnosis, 75 (63%) said that their viral load was something they had taken into account when deciding to use condoms.

Interestingly, more said they had taken viral load into consideration with HIV positive partners (44% of the 120) than with men who were HIV negative or of unknown status (38% – some men considered it with both positive and negative partners).

Participants were asked to estimate the perceived protective value of having an undetectable viral load on a scale of one (“absolutely no risk”) to seven (“absolute risk”).  The average score was three (low-to-moderate risk) when considering sex with HIV-negative partners and two (no-to-low risk) when considering sex with HIV-positive partners (where the perceived risk was presumably superinfection). Not surprisingly, men who thought the risk was lower were more likely to have unprotected sex and to consider viral load as one of the reasons involved in doing so.

When having unprotected sex with HIV-positive partners, men said they were more likely to consider viral load with buddies (over half the partners) than with casual partners (only one in five). Conversely, when having unprotected sex with HIV-negative partners, nearly 60% said they considered their viral load with a casual partner but only 40% with a buddy.

With positive partners, all but one of the 14 men who said they had considered viral load had explicitly discussed it with their partner before sex. Conversely, only three of the 20 men who had considered viral load when having unprotected sex with an HIV negative partner had discussed the subject.

Conclusions

It looks as if there are two different phenomena going on. With HIV-negative partners, men who considered their viral load are doing so in the main as part of a unilateral process of considering how liable they are to transmit HIV. In the case of HIV-positive partners, the researchers comment that “further qualitative studies are needed to shed light on the perceived added value of considering viral load”, but speculate that it may take place within the context of broader discussions about HIV superinfection and STIs.

This is a small study of quite a specific group: HIV-positive gay men who were already engaged and informed enough to join a community consultation group. They could therefore be ‘early adopters’ of viral load as a factor to take into account when considering sexual risk.

As the researchers comment, “future investigations should include the perspectives of HIV-negative MSM in the communication around undetectable viral load and unprotected anal intercourse”, and a wider consultation with less-engaged HIV-positive men would be interesting too. 

They also comment that further investigations are needed to establish the risk of transmitting HIV via anal sex with an undetectable plasma viral load.

They comment: “HIV prevention campaigners need such evidence to take an informed stance in the debate around viral load considerations and urgently so, in light of their already frequent use by MSM.”

Reference

Van den Boom W et al. Undetectable viral load and the decision to engage in unprotected anal intercourse among HIV-positive MSM. AIDS and Behavior, e-publication ahead of print: DOI 10.1007/s10461-013-0453-9, 2013.

My first concrete experience with HIV research took place in 2007. I had applied, interviewed and been selected to participate in a 2-month research and volunteer internship in the country of Namibia. The internship program that I joined had been established several years prior and had a reputation for being an incredible learning experience for those selected to participate. Undergraduate students from various faculties within the University of Toronto were selected to travel to Namibia to conduct research and volunteer within a local AIDS service organization (ASO). 

With very little applied training or education (in research methods, on HIV in a Namibian context, on community-based approaches to research), I flew overseas and landed first in Windhoek before driving eight hours north to a rural town called Ongwediva.

For the volunteer portion of my internship, I worked within an organization that provided microfinance loans and HIV education to women who were supporting orphans and/or other vulnerable children (OVC). OVC are defined as a child 18 years of age or under who has lost one or both of their parents or primary caregivers and  is in need of protection. In Namibia, more than 28% of those 18 years of age and under are classified as OVC with a shockingly high percentage of children orphaned because of HIV and AIDS. 

The first time I travelled to Namibia in 2007 (1), the national HIV prevalence rate was hovering around 15%, which is a high despite the fact that the population of the country was just under 2 million at the time. Although the country’s population isn’t large, dealing with thousands of people living with HIV in the context of a weak infrastructure is challenging. While the HIV prevalence in Namibia has shifted slightly since 2007 (the latest report shows a national prevalence rate of 13.1%), Namibia still ranks amongst the top ten worst countries globally in relation to adult HIV prevalence. I believe that the history of a consistently high HIV prevalence rate was the reason the internship program was established in Namibia. 

Outside of some readings completed prior to departure, we were not required to complete any courses or training to prepare us for the research projects we were about to undertake. On top of this, students traveling abroad were expected to create a research project that we would embark upon once we arrived in Namibia without consultation from our Namibian “partners”.

At the time, I remember feeling frustrated with these expectations; how could I be expected to develop a research project not only without the necessary training in methodologies but also without ever having been to Namibia or communicated with any of the potential organizations or ASOs that I might end up working with? 

Though I did not realize this at this time, I was operating within a colonial research structure which placed me, the undertrained, naïve, and eager (yet ignorant) undergrad, in a position of authority over the research including who would be involved and what and who would be studied. This structure positioned me as the research “expert” regardless of my inexperience both in research and in Namibia. Yet my overall academic immaturity and ignorance was irrelevant and became secondary to the incredible experience I was about to undertake. 

Critical considerations about how to ethically engage in an international research expedition were not a focal point and emphasis was placed on ensuring that the experiences of the University of Torontop (Western) students were monumental. Though I was aware that entire bodies of critical literature existed on research methodologies and approaches, HIV engagement and international work yet community-based research and ideas around the greater involvement of people living with HIV and AIDS (the GIPA Principle) failed to make an appearance in the internship program or research structure we were being churned through. 

(The Greater Involvement of People Living with HIV & AIDS (GIPA) Principle was introduced and formalized at the 1994 Paris AIDS Summit when more than 40 countries committed to “support a greater involvement of people living with HIV at all ... levels ... and to ... stimulate the creation of supportive, legal and social environments”. )

The GIPA Principle aims to ensure people living with HIV and AIDS are the backbone and key contributors to program development, policy-making and implementation and that this involvement is meaningful rather than tokenistic. This principle seeks to highlight the rights and responsibilities of those living with HIV and AIDS including the right to self-determination and the ability to play an active role in decision-making processes that impact their lives. Despite the widespread acceptance and global approval of the GIPA Principle, there is still much work to be done in order to more fully immerse this approach into various sectors including international student research on HIV and AIDS. 

While the benefits of applying the GIPA Principle are evident, there are often many challenges which stand in the way of successful implementation/involvement of people living with HIV including HIV-related stigma, inexperience with research, distrust of researchers, and that involvement in research may not be prioritized compared to other components in life (social, health, family, etc.) (2) Within the context of academic, social research, community-based (participatory) research (CBR) has emerged and solidified itself as a methodological process for conducting research in a way that positions itself in opposition to many of the more historically conventional approaches. CBR not only emphasizes the involvement and collaboration of community members at all stages of research (from project design and development to data collection and analysis to knowledge dissemination and translation) but rather understands meaningful community involvement as imperative and integral to the research process; in essence, meaningful community involvement is non-negotiable. 

Theoretically and depending on the goals and objectives of a research project, CBR represents an almost utopian approach to research which moves away from some of the more historically troubling aspects associated with some research practices. In practice however, CBR is far from perfect and – like the GIPA Principle – faces barriers in practice. The insider-outsider dilemma is often sited as a consistently challenging issue for CBR as is the general distrust that communities often/may have towards researchers. (3) 

My own university experiences with international research on HIV prevention serve as a case study to demonstrate not only the invisibility of the GIPA Principle and CBR in practice but the near complete absence of them. Many Western universities not only offer but promote student involvement in exchange or abroad programs which provide these students with infinite opportunities to expand their minds, experience different socio-cultural perspectives, increase their chances of accessing additional opportunities and importantly, aggrandize their CVs. This was my experience in both my undergraduate and graduate degrees at two academic institutions in Canada; this was also the experience of many of my university peers. 

While I felt I had learned many valuable lessons on my first excursion to Namibia during my undergraduate degree, in hindsight, it is evident that many more lessons remained unexamined. While I made the effort to think more critically about my social and global location in the work I was participating in, this critical thinking did not permeate my thought process in a way that drastically impacted my actions as I still actively chose to pursue a graduate degree which included traveling back to Namibia to conduct research. 

While I take full responsibility for my actions and choices within both my undergraduate and graduate degrees, I think it is also important to recognize that I was operating within a system which very much facilitated my goals of engaging in international work yet simultaneously did not provide adequate training in order to do this work critically, ethically or meaningfully.

As one would expect, my initial experience of travelling overseas to conduct “research” in Namibia created a slew of subsequent opportunities. Even though several years have passed since both my excursions to Namibia, I am still reaping the benefits of them via conference presentations and publications. Conversely, I doubt very much that the organizations and participants I worked with are fairing as well.

(1) I travelled to Namibia a second time in 2009-2010 to conduct my MA field research. This time, I travelled to Walvis Bay, an area in Namibia that experiences high levels of mobility via two transnational highways and the country’s only deep-water port where international boats can dock. In addition to high levels of mobility, Walvis Bay also experiences rates of HIV around 10-15% higher than the national prevalence rate (25-30%); it was for this reason that I chose to conduct my research in this town.

(2)Travers, R., Wilson, M.G., Flicker, S., Guta, A., Bereket, T., McKay, C., van der Meulen, A., Cleverly, S., Dickie, M., Globerman, J., & Rourke, S.B. (2008). The greater involvement of people living with AIDS principle: Theory versus practice in Ontario’s HIV/AIDS community-based research sector. AIDS Care. 20: 615-624. 

(3)Fockler, L.A. (2010). Community researchers’ experiences with community-based research. (Unpublished master’s thesis). McMaster University: Hamilton.

In April 2012 I wrote a piece for PositiveLite.com entitled “My Barebacking Journey”. In it I talked about how I had made the decisions not to use condoms since my college days and how this had ultimately led to my testing HIV positive in September 2011. 

A year later, I thought I’d take the opportunity to sit down and put my thoughts over how things have gone over the last 12 months.  Some things have changed dramatically, others haven’t changed at all.  I guess in some respects life is just carrying on just the same as it always has. 

Since I wrote here last, I have come out as an HIV-positive person to nearly everyone I know. Only my parents and immediate work colleagues are in the dark. I managed the “coming out” process carefully; telling a few people, gauging their response, and then telling a couple more, until the deed was done. Surprisingly, for a city of its small size, the public reaction to my condition has been overwhelmingly supportive. Not one person has reacted negatively to it, and the gossip has largely been low key. People whenever I see them, ask me how I am doing, and it has really shown me that the people I call friends really are friends, and I am honoured to have them in my life. 

In November 2012, after my viral load reached a peak of 1.7 million, and my CD4 flicked a margin above the 350 threshold, I took a week off work to start my HAART medication. I was prescribed Truvada and Sustiva, with a view once the viral load was fully suppressed to move on to Atripla.  In order to get a week off work in order to manage any side effects at such short notice, I decided to inform work. After careful consideration of the pros and cons of taking such a step, I decided that it was the right thing to do. I didn’t actually have to say it as it turned out – my manager asked me for a private word and turns out he had guessed it. I suppose a sexually active gay man, talking about having a medical condition which requires a lifetime of medication, kind of drops the hint – and he had put two and two together.  

The reaction I got from him has been fine. No issues whatsoever, and as a result of him being informed of my condition, he has allowed me time off at short notice to attend the clinic for blood tests and regular check ups – something that would have been hard for me to do had he not been aware of the situation. What is more, he has kept it to himself, and not blabbed it to all my work colleagues, so there are no issues there either. 

The question I get asked most now I have started the medication, is how is it going? What about side effects? 

Well the first couple of weeks were a mixture of horror and bizarre experiences.  I wanted to experiment with the drugs – to see how they would impact on my normal life. So I ate my usual meals, drank a few beers before taking them and all that jazz. The first time I took them with beer was like nothing on this earth. I had a couple of pints then popped my pills. Within half an hour, I had gone from merry to totally blotto. I said goodbye to my friends, and staggered home. What normally takes me 20 minutes, took me one hour to walk. I fell through my door, passed out on the sofa with the room spinning! It was as though I’d had twenty pints, not two. A very peculiar experience, it made for a cheap night though! 

Over time I got fed up with not being able to enjoy a couple of quiet beers after a 14 hour shift at work, and it came to a head just before our works Christmas dinner. I spoke to my consultant, and he informed me that I didn’t have to take them at exactly the same time each night; if I wanted to take them immediately before I went to bed, within a four or five window period each night, that would work just as well. So this is what I did, and continue to do. 

I lead life just as I always have done; the only difference is that before I go to bed, I chomp down on my HIV medication. Sure, sometimes if I’ve eaten late at night, the medication triggers some strange vivid dreams, but truth be told, I quite like them! They’re not scary, and on the whole, are very enjoyable experiences. 

More importantly, the medication is working. Within 5 months of starting my treatment, my viral load has gone from through the roof, to undetectable and my CD4 is on the rebound.  I feel more energetic that I have at any point since my diagnosis back in September 2011, and I know that provided I keep taking them, and they keep working, then there is nothing to worry about.  HIV isn’t a death sentence any more, it is a life long chronic, but manageable condition.  I think this is the most important message that we need to get out there people who are recently diagnosed, or whom are living with the virus, but not on treatment.  Especially with the continued debate over treatment as prevention – something that I am a strong advocate for.  

However life on HIV treatment isn’t all smooth. Over the months, I have noticed an alarming development. It would appear that I am losing my libido. I have a far lower interest in sex now, than I did before I started HIV treatment. It’s not that I have HIV, as even after my diagnosis I was still an exceptionally horny guy. I still get my moments, but when I look back to how I used to be, the libido has certainly waned since starting HIV treatment. This isn’t a universal issue though; friends of mine on treatment have found their libido actually increased.  It’s clearly something that I need to continue to work through with my medical team. 

So what else has the last year brought? I found myself in a relationship, something that hadn’t happened in a very long time. It was nice; we met in a bar, and things quickly moved onto more, it was during a night out together that I realised I had the dreaded disclosure to do. I plucked up the courage, and told him that I had something to tell him. As with all my friends, his reaction was great. He said that he knew the risks, he knew other people in the city who were HIV positive, and it didn’t faze him. Sadly it wasn’t to last, only a fortnight ago we broke up after three months together. He said that it wasn’t anything to do with the HIV, but as these things go, it always leaves that lingering thought in your mind. Still, such is life, we live and learn and move on. 

Over the course of the year since I last wrote for PositiveLite.com, there have been moments where I wished to the high heavens that I didn’t have this condition; I would be lying if I said otherwise. On balance however, I think that it has made me a stronger person for it. It has given me a greater appreciation of my health; I take a more active role in keeping myself healthy, I’ve cut out the junk food and eat more fresh fruit and vegetables. I drink less alcohol and more water.  As I am an out and proud HIV positive person, I also tackle stigma head on when I hear people talking rubbish in the circles that I socialise in. I strongly believe that it is only by being out and open about our statuses, can we eventually reduce stigma of the condition. If we sweep it under the carpet, or are ashamed of it, then stigma is allowed to grow and rear its ugly head. 

That’s about it really; my thoughts of living with HIV are as they have always been. It’s something that I live with, not suffer from. My journey over the last year, of coming out as an HIV-positive person has led me to meet many other people I already knew who are also in the same position, and I take strength from them, and hopefully them from me. 

You can follow Josh on twitter at @JoshLandalexxx. 

Terrence Higgins Trust, generally considered the UK's leading HIV and AIDS organization, and the largest in Europe, is promoting treatment as prevention, including for gay men, on its new “It Starts With Me” campaign.

"England", it says, “can halt HIV within a generation”.  The campaign is the largest scale by THT to date, running until Spring 2015. Read their press release here. 

Cary James, Head of Health Improvement Programmes at Terrence Higgins Trust says “While a cure or vaccine for HIV remains stubbornly out of reach, what many gay men don’t realise is that medical advances mean it is now within our community’s grasp to stop the virus in its tracks. By getting as many people with HIV as possible tested and on effective treatment, we should see new infection rates fall rapidly

Says the campaign website “We are at the start of a new era in stopping the spread of HIV. We know that the combination of regular testing, HIV treatment and condom use is the key to success.

You can be part of something that changes HIV history. You are the key to stopping HIV in your own life and in the community.”

This kind of strategy marks a transition from what was commonly called poz prevention  - a concept that essentially suggested that HIVers maintaining good sexual and emotional health were better placed to make sound decisions and in doing so, help reduce new infections – to a more direct approach which stresses the benefits of treating HIV to both improve health and reduce viral load, and thus make transmission much less likely.

The campaign makes no specific mention of when to start treatment, although treatment as prevention advocates routinely suggest the earlier the better, not only as a prevention technique, but primarily because the weight of evidence now suggests it produces better health outcomes for the HIVer.

Current UK guidelines recommend treatment for all individuals with CD4 counts below 350, but if a patient with a CD4 cell count above 350 wishes to start treatment, this decision should be respected and treatment be started.

On the issue of infectivity, gay mens' sexual health sites, in the absence of hard data relating to MSM, are currently all over the map. THT says what most experts believe, that “Someone on treatment has an extremely low risk of passing on HIV if their viral load has been undetectable for six month and they are free from sexually transmitted infections. Unlike other sites, there is thankfully no talk here about that perennial red herring, virus in the semen, which tends to be found only in “trivial” amounts according to leading researcher Myron Cohen.

Using the slogan “We Can Stop HIV” the THT campaign is also interesting for drawing on issues of community solidarity and GIPA. Not that this hasn’t been employed before, but more traditional poz prevention campaigns like HIV Stops With Me worried some critics with the perception that they sent mixed messages about personal and shared responsibility. The THT campaign seems to avoid that trap.

One "off" note: the THT website includes the “official” recommendation that all gay and bisexual men test at least once a year. It's arguable that for sexually active men with multiple partners that isn’t nearly enough. Vancouver’s Health Initiative for Men (HIM) for instance says “guys who are more at risk should test every three months.”  We concur with the latter recommendations.

In Canada, only B.C. has adopted treatment as prevention strategies  in the form of test and treat and is enjoying some success in reducing new infections as are other jurisdictions such as New York, San Francisco and Washington, D.C. The issue of the efficacy of TasP for MSM is a controversial area, though, as it has been difficult to reduce incidence in that population.  Dr Julio Montaner, the leading proponent of TasP maintains the issue is not whether TasP works in MSM but how much.