The images accompanying this article are from campaigns around the world informing people living with HIV that if their viral load is durably suppressed, they can not transmit the virus to others. There were no Canadian images used because no such campaigns exist in Canada.
People living with HIV have never played a greater part in designing and implementing prevention messaging. In just a few months, the U = U message from the Prevention Access Campaign, arguably the most successful HIV campaign ever, despise its humble origins – it’s poz all the way and operates with no government funding and on a shoe string - is everywhere. It’s ubiquitous U = U slogan (it stands for Undetectable = Uninfectious or Untransmittable, take your pick) is a social media phenomenon.
I need to declare a conflict of interest: PositiveLite.com of which I’m editor, backed this campaign right from the start. Since then I’ve been a vocal supporter. I like the work this campaign does. I like that it’s firmly rooted in science that is overdue to be heard more widely. I like what it does for people living with HIV. And the campaign’s high profile and passionate leader Bruce Richman is smart, a workaholic more committed to improving the lives of people living with HIV than virtually anyone I’ve ever met.
Richman and his team of poz advocates have scored major successes in shaping the international dialogue on HIV transmission in unparalleled ways. But are the pros onside? That's a good news, bad news story as Richman himself will admit. “To be honest, it’s been a surprising challenge with AIDS Service Organizations but we have a better understanding now of the factors driving the pushback.”
PositiveLite.com spoke to Richman amidst a flurry of criticism aimed at organizations perceived as being nowhere on U = U. But then it’s early days; organizations don’t turn on a dime and the wheels can run frustrating slowly. But there is impatience everywhere.
Said the feisty Josh Robbins in a column on his popular imstilljosh.com website this: “The deafening silence from the largest HIV service organizations in the U.S. about the actual risk of someone undetectable is bizarre. Are they wasting the opportunity to thwart HIV stigma?”
Citing the U=U campaign, Josh goes on to say it was “the defining moment that many living with HIV have wanted and needed – a real possibility to end HIV stigma once and for all. And spreading a message of normalcy and essentially taking the virus, the fear of transmission and infection, out of the sex equation. A message that was begging to be screamed and celebrated by all the HIV world. But they aren’t talking about it.”
He adds “Whether it is egos of the administration at these organizations, or the fear of that one outlying transmission they have been imagining waiting for years and years will finally happen, it is completely unethical to continue to stigmatize and inaccurately describe the risk as anything but zero.”
Closer to home, a similar theme was taken up last week in the Huffington Post by University of Toronto health expert Laura Derksen. The widely shared article said “Despite the fact that HIV is now a treatable condition, "educational" messages on HIV prevention are still based on fear, and almost universally exaggerate the risks of HIV infection and its consequences. Misinformation and an inflated fear of HIV infection are widespread.”
She continued, “I understand the instinct to overstate the risks of HIV in order to encourage prevention, but messages that stoke fear and stigmatize HIV come with serious unintended consequences. Antiretroviral drugs are our best hope of ending the HIV epidemic. Rather than pushing prevention through fear, we should mobilize to support people living with HIV. “
So while the international prevention community is under fire like never before, there are nevertheless fine examples of U =U-type messaging in place from around the world, with the UK’s Terrence Higgins Trust most often cited. Others, like this month’s remarkable campaign from AIDES, France’s leading HIV organization recently featured in PositiveLite.com, have drawn major praise.
In Canada, examples of responsive U-U-type messaging are currently much harder to find. Certainly CATIE, Canada’s leading information provider – we like their work - has kept up with the science in updating most of its material on undetectable viral load. CATIE describes the related risk as “negligible”, the scientific basis behind the more user-friendly U=U message and one which the PAC consensus statement includes. That statement is endorsed by dozens of experts from around the world. But PAC wants organizations to go one step further - to use language appropriate to sexual health messaging. “Negligible risk” – the term usually has to be explained to the layperson - is generally regarded as not falling in to that category. So instances of U = U–type language in Canada are currently rare.
But then of course there are interminable arguments, infuriating to U-U supporters, about whether “negligible risk” equates to “zero risk.” It’s important to understand the concept. Here’s what PAC says. “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” Agree? I do.
Here are a few others in Canada who are on side:
Elsewhere in Canada, where information on undetectable viral load exists, it’s easier to find inaccurate information on this topic than accurate. U=U supporters are encouraged by Richman to challenge out of date information. That’s why in the States, the Prevention Access Campaign has started its S4 initiative, (“See Something? Say Something [S4] empowers people living with HIV and their allies with the tools and a safe space to identify, report, and resolve inaccuracies, biases, and stigma wherever and whenever they find them“ says their website. To date, 120 volunteers have been recruited to do this work and are currently being trained).
Much work needs to be done. Even the venerable CDC is a target. Despite entreaties from Richman its website still says “Yes, it is possible that you could still transmit HIV. However, having an undetectable viral load greatly lowers the chance of transmitting the virus to your sexual partners who are HIV-negative”.
Even the poz-friendly site Healthline gets it (very) wrong by saying “A low viral load means you are less infectious. But it’s important to note that the viral load test only measures the amount of HIV that is in your blood. An undetectable viral load doesn’t mean HIV isn’t present in your body. HIV can still be transmitted to a sexual partner through seminal fluid or vaginal or anal secretions when your viral load is considered undetectable. Continue to take precautions to lower the risk of transmission. Make sure to use condoms correctly and consistently when having sex.”
How is all this playing out in social media, arguably, for better or worse, now THE hub for sexual health dialogue at this time? The conversation around U = U has been prolonged and mostly supportive. Richman is often on Facebook; he likes to quote the Director of the Division of AIDS at the National Institutes of Health (NIH): "Once you begin therapy and you stay on therapy, with full virologic suppression you are not capable of transmitting HIV to a sexual partner. With successful ART that individual is no longer infectious. The risk is zero. I repeat zero.” (See the videos below,)
But U = U supporters on social media often have to do battle with viciously unkind detractors. “Unprotected sex with a poz person - a Russian roulette play with one’s health. Depending on the weapon being used, (capacity of bullets) to play Russian roulette it only takes one bullet out of the total capacity of the weapon.” The depiction of people living with HIV, even when they are undetectable, as vectors of a deadly disease – this particular attack came from - honestly- a sexual health educator in NYC this past weekend on Facebook - is profoundly disturbing.
Richman gets very angry at responses like this. But he tries very hard to understand where they are coming from.
He told PositiveLite.com this week “Many AIDS Service Organizations in the U.S. are responding to the crisis of the new administration and understandably only have capacity to focus on that response and their primary areas of focus like access to treatment, housing, food security, criminalization and other serious concerns. That said, it isn’t a high cost to update an inaccurate website or train staff to say #UequalsU. This doesn’t require a long deliberation. Truth is non-negotiable. We’re helping (when groups will allow us!) by providing technical assistance and creative assets to groups at no cost. “
“What enrages me most” he says “are the folks who believe the science but don’t feel concerned about inaccurately telling their clients with HIV they are infectious. They’ve expressed to us it’s a public health decision because their clients may stop using condoms or won’t understand the importance of adherence to stay untransmittable. There’s no excuse for this kind of paternalistic and infantilizing abuse of our rights to accurate information about our bodies. Everyone has a right to know.”
“But more than anything, there’s the collective trauma that so many have from living through the holocaust and associating our HIV with pain and suffering. We’re afraid to harm anyone. Frozen. I’ve seen people agree with the science and express the intention to update their materials, but then withdraw and maintain there is a risk just in case someday there’s that outlier case. As a result of their fear, they exaggerate the risk, keep people afraid of people with HIV and keep people with HIV in danger. “
Bruce is passionate about letting the science do the talking. “We literally have the head of the division of AIDS at NIH repeating “let me be clear, Zero risk” and the lead researchers from the studies on the subject saying the risk is insignificant and so low it’s not worth taking into consideration. And yet these other organizations do the opposite. They don’t trust the experts. They take the risk into consideration and maintain that it’s not zero. They find excuses. It’s just too hard for them to process that the science is real, given what we’ve known about HIV for the past thirty five years. It is safer for them psychologically to say there is still a risk. So the personal and subjective experience of folks is influencing their decision to share this groundbreaking information with people with HIV.”
Is Richman winning? I’d say yes, he is. But let’s not fool ourselves. U = U is here to stay and eventually everybody will wonder what all the fuss was about. But wheels turn slowly. Can we wait? Not really when delay hurts people living with HIV.
So let’s get moving. Faster. Please.
Award-winning blogger Bob Leahy first made his social media mark a decade ago on LiveJournal.com where there are still to this day almost 3,000 entries of his available to be read. He was a featured blogger on Ontario’s HIVStigma.com campaign, along with PositiveLite.com founder Brian Finch. He joined PositiveLite.com at its inception in 2009 and became it's Editor a year later.
Born in the UK, Bob’s background is in corporate banking, which he gladly left in 1994, after being diagnosed with HIV the previous year. He has chaired the board of PARN (Peterborough AIDS Resource Network) and has been an executive board member of both the Ontario HIV Treatment Network (OHTN) and the Canadian AIDS Society (CAS). He was inducted in to the Ontario AIDS Network’s Honour Roll in 2005. Bob is currently a member of Ontario’s GMSH (Gay Men’s Sexual Health Alliance). He also writes for TheBody.com.
In 2012, Bob was honoured with the Queen Elizabeth II Diamond Jubilee medal for his work and commitment to HIV/AIDS in Canada.
Bob continues to write for this site while in the Positivelite.Com editor’s seat, with a particular interest in HIV prevention, theatre and the arts in general. He is accredited media for a number of Toronto theatres. He lives in Warkworth, Ontario with his partner of thirty-two years and three dogs.