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Articles tagged with: AIDS Committee of Toronto

Sep23

What it means to be undetectable

Tuesday, 23 September 2014 Written by // Bob Leahy - Editor Categories // As Prevention , Features and Interviews, Sexual Health, Health, Treatment, Opinion Pieces, Bob Leahy

Bop Leahy talks to the folks at AIDS Vancouver about their innovative campaign “The New Face of HIV – What It Means to Be Undetectable”. It refers to the new realities of living with HIV in the era of highly effective antiretrovirals

What it means to be undetectable

Bob Leahy: Thanks for agreeing to talk to us. We’re intrigued by what you are doing at AIDS Vancouver. Explain the name you have chosen for this new campaign “The New Face of HIV” and why now is the time for it. 

AIDS Vancouver: The full name of the initiative is "The New Face of HIV – What It Means to Be Undetectable". It refers to the new realities of living with HIV in the era of highly effective antiretrovirals (ARVs), which most of us in Canada  - and everyone who tests positive here in BC  - is fortunate enough to have access to.

The name reflects our sense that while the prognosis for people living with HIV has changed so dramatically over the past 15 or so years, the perception of HIV hasn’t caught up. For a lot of people, the term “HIV positive” conjures up a reality that hasn’t existed for most HIV positive people in Canada since the ‘90s.

Because of ARVs, HIV is no longer a death sentence. The 2014 BC Provincial Health Officer’s report describes HIV as a chronic, manageable condition with a near normal life expectancy. The European PARTNER study found no cases of HIV transmission by vaginal or anal sex between serodiscordant couples where the HIV positive partner had an undetectable viral load after a total of 44,000 sex acts, which suggests that infectiousness is very low. Most people experience very few side effects from treatment. So living with HIV today is very different from living with HIV even just ten years ago.

As for the timing, this project was initially inspired by the experience of one of our members after he tested positive and discovered this huge disconnect between what his doctor was telling him, what the latest research was saying, and what he was experiencing in his daily life as an HIV positive person. He was encountering all of this stigma and misinformation based on an out-dated understanding of HIV, and he was suffering because of it. And he quickly discovered that he was not alone - as he met other HIV positive people, he heard similar stories of rejection, isolation, depression... of people suffering because of stigma that was completely unfounded in current realities.

So from that came this idea that maybe it was time to move away from the term HIV-positive, with all of the historic baggage it entails, and to start thinking of a new identity that better reflects the current realities of living with treated HIV. This new identity is “Undetectable”, which is meant to describe someone who is HIV positive but is responding well to antiretroviral treatment and has an undetectable viral load. 

You don’t like the term "HIV-positive" very much, do you then?  Tell us more about why it doesn’t really work for you folks.

It’s not so much that we don’t like the term as we think it’s too vague. When someone says they’re HIV-positive, what are they saying? What does this term tell us about their potential lifespan, about their immune function, about their risk of transmitting the virus? What does it tell us in terms of their health care and other support needs? Not a whole lot. Whereas if someone says that they’re Undetectable, suddenly we know a whole lot more about them. We know that they’re on treatment and responding well. We know that they’re connected to care and seeing a doctor regularly. We know that they’re likely to have an un-compromised immune system and to live a near-normal lifespan. And we know that they have a very low chance of transmitting the virus to anyone else.

Logically, it doesn’t make sense to use only this one very broad term (HIV-positive) when treated and untreated HIV have such polar opposite outcomes: Healthy immune system vs. compromised immune system; normal lifespan vs. shortened lifespan; negligibly infectious vs. infectious. How can one term accurately describe two completely different realities? It is like apples and oranges. They are two different things and therefore require two different labels. 

So what are you proposing to be used in its place?

Well, as the name of the initiative suggests, "Undetectable" is the term we’re promoting the most, in part because it’s already being used fairly extensively. Although not as extensively as we think it should be. We also use the terms "HIV Neutral" and "HIV in Remission" in various contexts, but "Undetectable" is the term we’d like to see gain traction in the wider population. 

OK, guys. I get the meaning of the other terms but what do you mean by “HIV-Neutral” and “HIV in Remission”?

A major motivation of this project is ‘rebranding HIV’ to better reflect the current medical realities of living with HIV, and to make those realities understandable to as many different groups of people as possible. Not everyone understands what is meant by viral load, so the term "Undetectable" may not resonate for some people, whereas a term like "HIV in Remission" draws a parallel to cancer in remission, which most people readily understand. Similarly, "HIV Neutra|" conjures a visual image of HIV on a continuum, with HIV negative on the one end, HIV positive at the other end, and HIV neutral somewhere in between. There’s also the sense of HIV being neutralized, in the sense that it’s no longer capable of ravaging one’s body or of being passed on to others. In terms of rebranding, "Undetectable" is our preferred term, but in terms of talking about HIV and helping people to understand what it means to live with HIV today, we definitely see the usefulness of these other terms.

The goal is to help people to shake off dated perceptions of HIV and to understand current realities, and we believe that new language can be a powerful tool to help achieve this. 

You say that using just one term like "HIV-positive" has many negative consequences, even on HIV research, for example. How does the widespread use of “HIV-positive” negatively impact the research we do in Canada and elsewhere?

Again, the problem as we see it is the lack of specificity. A lot of the current research on HIV/AIDS looks at the effects of living with HIV without necessarily distinguishing between treated and untreated individuals, which can result in broad generalisations that are of limited usefulness.

Thankfully this is changing, so instead of hearing that HIV positive individuals are at greater risk of stroke, for example, we’re now seeing studies like the one published in the IAS journal last month showing that this risk is mitigated by treatment, so that HIV positive individuals who have high CD4 counts and low viral loads – who are undetectable, in other words – are at no greater risk of stroke than HIV negative individuals. That’s the sort of specific, targeted research we hope this new language can inspire.

Let’s see if I understand. For example we are told that syphilis is particularly damaging if you are HIV-positive. Do we actually know that it is equally damaging for all HIV-positive people or is it less of an issue if you are undetectable? And if we don’t know, why wouldn’t we say so - or not press for research specific to various stages of HIV?

That’s exactly the sort of question we hope this project will inspire investigation into. There’s a lot of confusion out there, and that confusion has real impacts for people living with HIV, both in terms of creating unnecessary stress and anxiety, but also in terms of the care people are receiving. In our paper (The New Face of HIV, on our web page, for example, we cite examples of some people who are undetectable being treated as if they are immune-compromised by their health care providers, so being told to take various supplements, to eat special diets, to get immunizations. We have spoken to several physicians who suggest that some of these treatments are unnecessary for those who are Undetectable, but at this point we don’t really know what is and what is not necessary because the research hasn’t been done or hasn’t been widely disseminated.

Health care providers are offering the best advice they can based on the information available to them, but when that information isn’t accurate, their care recommendations aren’t going to be accurate, either. We hope that by starting the conversation around the new realities of living with HIV, and by providing new language to acknowledge an Undetectable identity, we will encourage more specific research on the topic of HIV so that we better understand which treatments are and are not necessary. 

I get it. So what about HIV prevention then? Will or should the proposed new terminology influence what we could be doing there too?

The good news is that changing how people behave is no longer our only option; we now have the knowledge and the tools to respond to how people are currently behaving, including those people who cannot or choose not to use condoms, for all sorts of reasons. In addition to condoms, we now have pharmaceutical options such as Pre-Exposure Prophylaxis (PrEP) and Treatment as Prevention (TasP), but we don’t seem to know quite how to talk about these options yet. We believe that terms like Undetectable can serve as that much-needed link between research and safer sex messaging; this new language will allow us to take the scientific evidence supporting these new pharmaceutical tools and translate this evidence into effective safer sex messaging.

Ok, on that issue you suggest that anal sex without a condom with someone who is undetectable is in fact “low risk”.  I think the evidence is in to support that assessment fully, but I’m not seeing that message from many others.  Why do you think that is? It’s an important one, isn’t it?

It’s estimated that condoms are 80-85% effective in reducing HIV transmission, whereas HPTN 052 and PARTNER suggest that sex with an undetectable partner is upwards of 95% effective. Based on this data, it seems reasonable that we should be as comfortable classifying anal sex with an Undetectable partner as low risk as we are classifying anal sex with a condom as low risk, which we do pretty much universally. We don’t have all the answers, but we do have access to the latest research on HIV transmission. We want to be able to translate this knowledge to a safer sex message that will allow others to make educated choices about sex.

We do think that this is an important message, but it’s also a message based on some very new data that challenges, to some degree, 30 years of thinking about safer sex. The PARTNER interim results only came out about six months ago, which isn’t a lot of time for people working in prevention and health promotion to process and integrate this information into existing strategies, or to come up with new strategies. There’s also the issue of how to translate this new science into effective messaging. How do you condense complicated concepts like viral suppression, per act transmission risk, and upper confidence limits into effective campaign slogans? How do you effectively promote condom use for one group of people while simultaneously promoting safer condomless sex for another group?

These are some of the challenges involved in responding to these results, and one of our goals with this initiative is to identify these sorts of challenges and start talking about how we as a community can respond to them.

Yes. And there’s a connection between being undetectable and personal empowerment too, isn’t there? You quote one of your informants as saying being undetectable is “a badge of honour”. It’s a feel good thing too, isn’t it? Many people report being elated about reaching undetectability, no?

Definitely. And we’ve met a number of people who say it is much easier to disclose as Undetectable than as Poz or HIV-positive as it conveys a more accurate and positive (no pun intended) message. One of the goals of this project from the outset has been to provide people who are positive and on treatment with a potentially more empowered and less stigmatized identity, one that’s rooted in a celebration of health and less encumbered by out-dated perceptions that equate HIV with debilitating illness and early death.

Do you think there is the danger though, in using the various terms you have chosen, to create new kinds of stigma? I’m thinking, say, between the treated and untreated, the detectable and the undetectable. Someone with “untreated HIV” for instance doesn’t sound like he or she is going to get a date too easily if they care to disclose that status in that way.

We’ve had many discussions about stigma and privilege over the past months, including the privilege that we enjoy in BC, where ARVs are covered for every resident who needs them. Unfortunately, there are millions of people around the world who don’t have the same access, and even among those who do have access there are people who don’t respond as well to treatment or who cannot reach an undetectable viral load for any number of reasons.

We acknowledge the potential for these people to feel excluded and stigmatized, but that is certainly not our intent, and ultimately we feel that the potential benefits of this new language outweigh the potential harms. We also feel that as long as we proceed with an awareness of that potential for a new form of stigma in mind, we should be able to mitigate any negative impacts.

Here’s how we see it: If a cancer patient completed treatment and went into remission should they be expected to continue saying they have cancer for the sake of inclusivity?  And even if they did, would this really make anyone who is still struggling with cancer feel any better?

OK, what’s the reaction been so far?  Do the people living with HIV you’ve talked to like it in particular?

The reaction has been enthusiastic. The only real hesitation we’ve encountered so far has been around the potential stigma issue you mention above, but that’s something we feel that we can address as we move forward and as we talk about the implications of what it means to be Undetectable.

We’ve been very upfront and quite deliberate in admitting that we don’t have all the answers, and that’s actually been quite reassuring to people who may have some hesitation. We’re not asking people to buy into our pre-determined interpretation of what it means to be Undetectable, we’re asking people to join us in figuring our what this new identity means, what are the implications of these new realities, and how can we work together to improve the lives of all people living with HIV, as well as to prevent future infections.

To answer the second part of your question, we’ve had some people say they feel lighter, a weight is off their shoulders. Let’s be honest, for a great many people HIV-positive and Poz are associated with 30 years of very negative meanings and health outcomes, so they welcome a new way of identifying this part of themselves. Some people we’ve talked to have also learned through the use of a new identifying word that they also have a better prognosis than they thought when they were using the terms HIV-positive or Poz.

I want to talk more about stigma, then. You suggest the term ”HIV-positive” is in itself potentially stigmatizing and that having an undetectable viral load is potentially less so. I’m thinking we as a community haven’t full explored the potential for someone who is undetectable to be perceived as less potentially threatening, less frightening and thus subject to less stigma. Do you think we have been missing the boat on what seems like a real opportunity to reduce stigma?  And if so, why on earth would we do that?

We think it’s important to note that stigma has become a bigger factor for many people living with HIV with the emergence of antiretrovirals. Before ARVs, HIV positive people were focused on fighting for their lives rather than on the stigma associated with HIV. Now that HIV is no longer a death sentence, the awareness of the stigma surrounding HIV is growing. We’re definitely seeing the tide shifting here in BC in terms of a greater recognition of the impact of stigma on all aspects of gay men’s health, for example, so we’re optimistic that any opportunities that have been missed will be taken advantage of as we go forward. 

Dr. Perry Kendall, the Provincial Health Officer, released a report this summer that basically says that if we want to bring down HIV rates among gay and bi men, we have to start paying attention to stigma and mental health, and to start addressing gay men’s health holistically. So the provincial health authority has stigma on its radar, and it’s working with the community to figure out how best to address stigma, which is very encouraging and very exciting. Exploring what it means to be Undetectable should absolutely be part of that conversation, and has a potentially very powerful role to play in reducing stigma for people living with HIV.

Although there is ongoing new research becoming available, we are at a point where we have enough evidence to start incorporating Undetectable into our safer sex messaging to enhance our prevention efforts and reduce stigma.

Well, it does seem to us and many others that AIDS Service Organizations have been busy downplaying PARTNER results and saying we need more time and still pushing condoms to undetectable poz guys who have condomless sex on their minds. (And yes, I know about the risk of contracting STIs but we’re talking about HIV transmission here.) Comments?

Condoms are extremely effective at preventing HIV infection when used correctly, but we know that a significant percentage of guys aren’t using them consistently, despite 30 years of condom messaging. So do we just give up on these guys, or do we say “Hey, we have other options now. Let’s make sure these guys know there are other ways they can protect themselves and their partners.” We think it‘s important to expand the conversation around safer sex and to give people the tools they need to make informed choices. 

Well, it seems to me too that, in NOT acknowledging the risk of transmission is negligible where one partner is undetectable, those who work in prevention walk a very fine line between being cautious and being guilty of contributing to the stigma that continues to exist around sex with positive folks even when they are undetectable. Agree or disagree?

We think most people in the prevention community would like to say that Undetectable equals non-infectious, but maybe we as a community are asking the wrong question. Maybe the question shouldn’t be, “Are we 100% sure that being Undetectable is risk free?” Maybe the question should be, “Is being Undetectable through the use of antiretrovirals as effective as condom use?” There is substantial evidence that this is the case, so shouldn’t we be expanding our safer sex messaging to include the use of antiretrovirals as a safer sex alternative for people who do not or cannot use condoms?

OK then. Forgive me for pushing this even furthe rbut this is a very important point in the discussions around being undetectable. I want to talk about the science that is in part behind your drive to introduce new language. You say  “there is growing evidence that the likelihood of transmitting the virus by someone who is undetectable is negligible.” Now I agree 100%. But how can we have the conversations that you suggest are needed when there seems to be substantial discord on what “undetectable” actually means for poz folks.  CATIE for instance says an undetectable viral load “reduces the risk of transmission.” AIDS Committee of Toronto (ACT) say condoms should still be used. “ACT maintains condoms are the most effective way of preventing HIV transmission” and very much downplays PARTNER interim results in their latest newsletter . Without the same level of understanding throughout our community, is that going to make it difficult to agree on new language, and more importantly, its implications to things like risk of transmission?

There is discord, but it’s by no means insurmountable. All of the examples you cite agree that an undetectable viral load reduces the risk of transmission – it’s just a question of by how much. So right there we’re starting with a significant consensus, and as we start to talk about these issues in more depth we can, hopefully, develop a stronger consensus and start to see fewer conflicting messages.

If we look back at the early days of HIV prevention, there were all sorts of conflicting messages about the degree of risk involved in various sex acts. Over time, as people debated and shared their knowledge and the science became clearer and more specific, a consensus emerged. There’s no reason to believe that won’t happen now, but the first step is to start talking. We think that discussing these issues will help lead to a consensus, and we hope to be a catalyst to this discussion through our initiative, which aims to jump start and share these conversations. 

Good point. Here in Ontario, I’m sensing a worrying  loss of credibility of prevention experts, though, on the part of some HIV+ people on this very same issue, and certainly throughout social media. For example one of our contributors just wrote "I rile at the inherent cowardice of HIV organisations and the LGBT media, who are reluctant to publish any findings that may damage the safe sex message.  You’d think that informing people that undetectable HIV-plussers on treatment are safer than most would be good news, worthy of trumpeting across the airwaves but there’s a tangible reluctance to give people the facts.” Do you see any of that kind of frustration in your part of the world?

Well, we’re fortunate here in BC in that Treatment as Prevention (TasP) is official health policy, so there’s an acknowledgement at every level that an undetectable viral load significantly reduces the risk of transmission. Where there may be some frustration is around the reluctance to make the jump from TasP at the population level to TasP at the individual level. We agree that treatment prevents infection at the population level, but very few people are comfortable saying that an undetectable viral load will prevent transmission between two people having sex without a condom.

As we mentioned earlier, we believe that we need to be asking the right question. It shouldn’t be, “Are we 100% sure that being Undetectable is risk free?” The question should be, “Is being Undetectable through using antiretrovirals as effective as condom use?” And if so, we should be expanding our safer sex messaging to include the use of antiretrovirals as a safer sex alternative for people who do not or cannot use condoms.

We certainly empathize with the frustration expressed by your contributor, and no doubt shared by many others who are living with stigma and rejection and see this great opportunity to have that stigma alleviated that is not being taken advantage of. But we also empathize with the prevention community, and the challenges they face in translating this science into effective, evidence-based prevention strategies that resonate with broad audiences.

Again, that’s why it’s so important that we start talking about these issues and working together to figure this stuff out. We’re at a transitional moment in HIV prevention, with new tools like Treatment as Prevention (TasP) and Pre-Exposure Prophylaxis (PrEP), and a much greater appreciation for the social determinants of health and the impacts of marginalization and stigma. Our hope is that we can come together on those points we agree on, build a greater consensus, and create a new landscape for HIV prevention and health promotion together. 

The implication, then, is that there is a fair amount of education to be done around the issues surrounding undetectability. Do you agree?

Yes, absolutely. Education and dialogue are critical.

Good. So how can people learn more about your campaign?

They can visit our website and we really hope that they’ll get in touch with us, share their thoughts, and give feedback about what undetectable means to them.

Very interesting stuff, guys! Don’t think the fact that I’ve thrown you some tough questions here means that I’m not impressed by what you are trying to achieve. It’s innovative and challenging and it’s going to get people thinking – and hopefully talking. And that’s exactly what we need. So thank you for talking to us. We really appreciate it. Now let’s see what others think.

*****

Huge thanks To AIDS Vancouver and the three who contributed to this discussion:

Dylan Griffith, AIDS Vancouver volunteer, New Face of HIV/Undetectable Project Team

Veronika Boyeva, AIDS Vancouver volunteer, New Face of HIV/Undetectable Project Team

Brent Sawlor, Peer Engagement Coordinator at AIDS Vancouver, New Face of HIV/Undetectable Project Team 

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