I’ve spent the last couple of months arguing that undetectable equals uninfectious. Now, I shouldn’t have to argue that, because the science tell us so. The world’s leading HIV experts and savvy organizations are saying it too. Still, there is resistance to embracing this, the most significant science breakthrough since antiretrovirals hit the scene back in 1996. The power of those antiretrovirals to not only return people to good health but stop the transmission of HIV has been called a game-changer. But for some the game remains unchanged.
I don’t think I need to recount in much detail the history of caution or outright denial that has led us to this point, but essentially it’s a drama in three acts. Here they are with the prevailing opinion from experts in a nutshell
Against this backdrop of official conservatism and documented evidence of unwillingness to level with the community in some cases, experts within the community of people living with HIV, who typically find a lower degree of proof acceptable than do their scientist colleagues, have been much more forthright. This example from leading HIV advocate Marks S King is typical. In “Will HIV Ever Be Safe Enough for You” Mark counters accusations of “false sense of security,” “positive guys lie,” “junk science,” and “if there’s even a small risk” very ably. That was in 2014. But detractors remain to this day.
The good news is that their number is visibly dwindling. But getting people to change their mind as I and my US colleagues have been doing via the Prevention Access Campaign and its Undetectable = Uninfectious message has been a journey both full of celebration and frustration. Celebration that we have gained the support, here in Canada, of names like PositiveLite.com and The Canadian Positive People Network (CPPN). CATIE has been sympathetic, changing their language too. Frustration that there remain those who can’t or won’t accept the U=U message.
Why do people say no?
HIV Service provider Megan DePutter addressed these very issues in “Why some organizations are slow to adopt the undetectable=uninfectious message”. If you haven’t read it you should. It includes a perceptive commentary from a seasoned insider on why and how people process small risks – and why sometimes their processing lacks insight.
As for myself, the reasons I’ve encountered why some are reluctant to go with the flow and fully embrace the U=U message have surprised me – and sometimes impressed, even when I disagree with them.
First let me discuss the only one that resonates at all:
You can’t say the risk of transmission when we are undetectable is zero and therefore you cannot say we cannot transmit the virus.
My response? Is in fact the risk zero? The Prevention Access Campaign says it best. “In real world terms, yes the risk is zero. In theoretical terms, the risk is a tiny fraction close to zero. The challenge is that scientific studies can never prove that risk is absolute zero. Through statistical analysis that number will keep getting closer and closer to zero. Researchers agree that because the actual HIV transmission risk is either zero or extremely close to zero, a person with HIV with an undetectable viral load is considered “not infectious” to their sexual partners.”
That explanation, which outlines the critical bridge between two concepts - "negligible" and "uninfectious" - has of course been bought into by the world’s best. So I’m feeling on pretty safe ground. Here are just a few.
“Undetectable viral Load means I can’t pass the virus on to anyone” GMFA
“We can now say with confidence that if you are taking HIV medication as prescribed, and have had an undetectable viral load for over six months, you cannot pass on HIV with or without a condom." Dr. Michael Brady, Medical Director, Terrence Higgins Trust, London, England (July 2016)
“People living with HIV "are leading lives that are normal in quality and length. With effective treatment, they are not infectious.” Professor Dame Sally Davies, Chief Medical Officer, England. The Telegraph (Aug. 2013)
“Research has shown that these same treatments mean that poz folks can lead active, healthy sex lives, without fear of HIV transmission to their HIV-negative partners” AIDS Committee of Toronto (ACT)
Top five bad arguments against U=U
Despite glowing endorsements of U=U from around the world, there are still those who struggle with the concept and raise a variety of arguments for claiming that undetectable does NOT equal uninfectious.
Here are five of of the ones I've heard so far that most fail to impress:
1. As sexual health information providers, we can be sued for messaging that undetectable means you can't transmit the virus if in fact someone gets infected.
My response: Ever been sued after you recommended condom use and the condom broke? Hardly. Besides, hypothetical “what if” arguments like this are for the birds, not real people.
2. There has been one case of “almost certain” infection with proper PrEP use. How do we know there won’t be one with undetectable?
My response: The PrEP analogy is only relevant in that it involves ART. It’s a huge stretch to try and relate it to large scale undetectable viral load trials. Besides, we have never argued that with PrEP there is NO chance of transmission.
3. I don’t believe you. I want to hear it from my doctor/the government/fill in the blank!
My response: Aaarggghh. Some of us poz folks know the science just as well as professionals and have consistently predicted research outcomes that have later become accepted by everyone. It depresses that because the main proponents of U = U are community members (the Prevention Access Campaign is an initiative unfunded by government and led by people living with HIV) our credibility is questioned. Believe me, we know our stuff.
4. We need to wait for more data.
My response: say hello to those who won’t cross the road or ride in an airplane. We have lots of data. At some point the evidence is compelling - and we have now reached that point. I believe that 58,000 unprotected sex acts in the PARTNER Study, and the message of the studies before that, is enough. Others don’t. But then, by their logic ten million unprotected sex acts is not compelling enough, because there will still be a minute theoretical risk to prevent them from using the “uninfectious” word. I believe that’s an untenable position.
5. Saying people who are undetectable are uninfectious stigmatizes those who aren’t.
My response: I’m not in the business of stigmatizing anyone, intentionally or otherwise. In fact I’m looking to free people from stigma, from feeling they have bad blood and are potential vectors of disease - and to stop other people telling us we have bad blood and are potential vectors of disease. But we need to be careful that in promoting the merits of being undetectable we recognize the position of those who aren’t there yet, for any number of reasons. They need our support. The viral divide, whether between poz and neg folks or between detectable and undetectable folks, is a danger we must be vigilant about. And I am.
Bruce Richman, my New York-based colleague who leads the Prevention Access Campaign has shared with me that he sometimes gets angry when dealing with arguments like the five I’ve listed above. I do too. I often wonder why this issue is so emotional, why I get so worked up about it and so frustrated that people sometimes reject the best news to come down the HIV pipeline in two decades. It seems downright odd. But then I rationalize it: U=U represents not learning, but something we are far less used to - unlearning. It’s about unlearning so much that we have believed about transmission risk, about condoms, about what it is to be HIV-positive.
Why it's personal
The argument is also very personal. Ultimately, it’s a science-based argument that is about me and you. It’s about how we see ourselves and how others see us. I can think of few developments where the impact has been so personal, so mind-blowingly life-changing - and thus so hard to swallow at first. Add to that our comfort with the status quo, even when the status quo is not all that comfortable and I get why some are slow to come on side.
But here's the thing. People absorb new information in different ways and at different speeds. Nothing wrong with that as long as they get there in the end, I say.