U=U’s naysayer moments
Bob Leahy says working on the U = U campaign has had its highs and lows. It’s achieved incredible success but detractors are out there also, sometimes with intelligent, thoughtful ideas, sometimes less so. This is about the less so.
Guilty as charged?
The Undetecable = Untransmittable campaign has enjoyed a lot of success – more so in fact than any campaign I've witnessed in 20 years of advocacy work. The term #uequalsu has become ubiquitous, part of the HIV lexicon, Over 270 community partners have adopted the slogan as their own in 25 countries. The number grows daily.
This is remarkable. In an age where the response to HIV has been largely taken out of the community’s hands, instead becoming institutionalized and the message more often than not controlled by government funders, the U = U campaign stands out. It is by and for the people.
That’s a model which has clearly made some uncomfortable. Midst the sea of support there is also what seems like distrust - distrust that people living with HIV could ever have got this right. That they haven’t considered this or that. That they don’t have a global view, don’t speak for the disenfranchised, don’t understand the social, legal and ethical implications of being either detectable or undetectable. All that is to be expected in what is essentially something of a patriarchy. Processing it and responding to it is a huge distraction for a very busy group of people.
It’s gratifying that the campaign has inspired amazingly thoughtful discussions. Not everywhere though. Social media can sometimes feel like a herd in search of “gotcha” moments, accusations of . . well, everything.
Here is a real example of the “everything but the kitchen sink” school of criticism. It’s from Facebook.
“The more I learn, the more terrifying your campaign appears. What are you trying to achieve? That you can have unprotected sex? That you can be treated without protection during a medical emergency? That others should not be afraid of contracting this lethal virus? Are you suggesting that people can track their viral load to make sure they are undetectable? Do you have any clue how hard this would be to achieve in a developing country like Africa? Or anywhere else for that matter? And now I see posts from Kenya! A country ravaged by HIV. Sure HIV+ people don't want to feel stigmatized but in an age where more and more people are practicing unsafe sex and where a culture of risk is already growing; why throw gas on that fire? And now I see you publish a U=U comic book depicting young men and their HIV+ super powers; "The Undetectables". HIV is not a super power. It is a deadly, debilitating illness that is ravaging our planet. Again, I don't understand why this campaign is helpful or how it reduces the risk of spreading HIV. I see you standing there in a T-shirt that says "No shame in being HIV+" but being a proud HIV+ person means protecting yourself and others from the disease. ”
In response to this and other distractions I took to Facebook to say this.
“I think there is confusion about U=U, which is science simplified, with the issues that people on treatment, or not, may face. U=U is science, plain and simple. Science does not stigmatize people. Science does not leave people out. Science is not bad. Science is not good. It just is.
The challenge is for people who support and advocate for people living with HIV to do so in a way that lets them take advantage of the science and mitigates its risk potential.
The U=U campaign is sometimes challenged to be all things to all people - to address the wrongs that not having an undetectable viral load presents, for example. Or to solve treatment access inequities. That's asking too much of a campaign, I think, whose sole reason for being is to communicate the science.
I think we need to be vigilant about expressing the campaign's limits. We can communicate the science. We can even celebrate its ability to change lives for the better. We can't address, at least very completely, all the issues that that knowledge results in.
It is unreasonable to blame the campaign if not all can take advantage of U=U. It is unreasonable to blame the campaign if the science has an upside for some and a downside for others. It is unreasonable to judge the campaign purely by its slogan and ignore its explanation. And it is unreasonable to cast the campaign as insensitive to our peers less fortunate than those who are undetectable. We are people who care. That's why we promote it.
The campaign is run by people living with HIV on a shoe string. Its focus is on messaging - and I'd argue that's been unprecedented in its impact. Implementation issues abound but the message remains the same.... #uequalsu.
We don't need to defend it. It just is.”