U=U laggards draw fire from the community

Published 29, Jan, 2018
Author // Bob Leahy - Publisher

The Global U=U picture is good, but community activists are stepping up the heat on organizations which have been slow to embrace it. Today the spotlight is on Greater than AIDS, GNP+ and in Canada, the Ontario AIDS Network. Bob Leahy reports.

U=U laggards draw fire from the community

This article originallly appeared on January 16, 2018

If 2017 was a good year for many people living with HIV, it was for a simple, three character slogan that seemed to be everywhere. POZ.com, in awarding Undetectable equals Untransmittable, or U=U, the campaign of the year described it as “perhaps the most discussed and rapidly shared message to hit the HIV arena in years”. The Washington Post called it  “the campaign credited with beginning to change public perception of HIV transmissibility.”

The campaign’s reach In Canada has been massive, its global reach profound. To date over 550 organizations from 70 countries have joined the campaign as community partners committed to spreading the news. CATIE described it as groundbreaking and a game-changer. "All of us here at CATIE, and indeed around the world, are celebrating the most significant development in the HIV world since the advent of effective combination therapy 20 years ago – people living with HIV with sustained undetectable viral loads can confidently declare to their sexual partners 'I’m not infectious!'" said Laurie Edmiston, Executive Director of CATIE – (Canadian AIDS Treatment Information Exchange) in January, 2017. 

Laggards, though, persist. We’ll look at a Canadian example momentarily but in the United States, Greater than AIDS, one of the largest HIV organizations in the country, still isn’t getting it right. It first drew community ire in August, 2016 with a misrepresentation of HPTN052 results. (“Someone with HIV who is undetectable is significantly less likely to pass the virus on to someone else by as much 96%”. Ermm, no!). Now, the sexual health content in a newly released campaign talks about the “nearly impossible” risk of sexual transmission when a person living with HIV is on successful treatment. That loose language is included in their recently posted YouTube video which actually dates from 2016 when folks were less emphatic about using “can’t transmit” or “don’t transmit”, and before the CDC weighed in.

(The video features Dr. Demetre Daskalakis from the NYC Department of Health. Both he and NYC now use exemplary  language like on the NYC Health website: “A person with HIV who has kept their viral load undetectable for six months will not pass HIV to their sexual partners, even if they have sex without condoms.” and “undetectable = untransmittable.”

On the GTA website though, the language used is as equivocal as on their old YouTube video.. “Studies show when the viral load is suppressed” it says, “long-term health is greatly improved and sexual transmission is extremely unlikely, if not impossible.”  The problem is that in 2018, “extremely unlikely” leaves room for doubt, say activists like Bruce Richman, who heads the Prevention Access Campaign responsible for U=U. “When an information provider tells someone with HIV who is undetectable there is an extremely low risk they will transmit HIV, they are exaggerating the risk…. Do they (information providers) realize that they will be a source for anyone who wants to stigmatize or prosecute us?” said Richman in a recent Facebook comment.

Fellow U=U supporters have jumped on GTA, of course. The community of people living with HIV who drive U=U has become increasingly impatient, if not militant, with those organizations who, by design or neglect, don’t deliver on U=U or any version of it. That same community has been through a string of similar battles. It knows how to win – and it usually does. Thus, few were surprised when GTA removed the offending video just days ago in response to a brewing storm of community complaints. The website language, however, remains intact – for now!

Other late- or non-adopters? Globally, GNP+ (the Global Network of People living with HIV) remains a holdout. Things first blew up in February 2017 when GNP+ published a position paper which soundly rejected the U=U campaign message, calling it “slick marketing” and inappropriate for those in the global south. PositiveLite.com reported at the time on that paper which GNP+ had titled “On Fear, Infectiousness & Undetectability”, noting it used unusually vitriolic language to attack the Prevention Access Campaign. The position paper was subsequently republished in more conciliatory language. Meanwhile multiple organizations from the global south that GNP+ had said would not embrace U=U have joined the campaign in droves and are now among its strongest advocates. GNP+, the organization that positions itself as representing the interests of people living with HIV everywhere has yet to spread the message that Undetectable =Untransmittable to anyone.

The rest of the world though is largely onside.

Canadian laggards?

Sometimes the issue is less about ideology, more about competence. Enter the Ontario AIDS Network (OAN), a publicly funded umbrella organization for AIDS Organizations in Ontario, Canada’s most populous province.

Last World AIDS Day the OAN, using monies from Ontario’s Ministry of Health and Long Term Care, mounted an awareness campaign intended for the general public. It was called “10 Facts about HIV in Ontario that Might Surprise You.” One of these facts addressed treatment advances in this fashion: Modern HIV treatment can be very effective. With good treatment, many HIV-positive people are able to reduce the amount of virus in their bodies.”

That language and its failure to address the fact that most people living with HIV can no longer transmit the virus drew immediate scorn. The process came under fire too. Community heavyweights like John Maxwell, Executive Director of ACT, (formerly the AIDS Committee of Toronto) jumped to Facebook to point out the lack of community consultation that went into the campaign. Things, though, got worse. Emails addressed to OAN Executive Director Paul Lapierre protesting the campaign’s indifference to U=U, including from this writer, went unanswered. Meanwhile the U=U community Facebook page lit up with howls of protest. Sample comment “When the CDC is saying effectively zero and the lead Canadian public health official too, disheartening is a massive understatement. It's misinformation and coming from OAN, it must be intentional. We cannot stand for it.”

Apparently following the OAN Board’s instructions, or maybe not, because his response was notably non-conciliatory, Lapierre wrote to the OAN membership on January 10. He also replied to me, six weeks late. In his reply to me he said this: “We also learned that not everybody was pleased with our campaign. Concerns specifically mentioned language used regarding mother-to-child transmission and the lack of mentioning U=U.  We did an informal focus group and found that average Ontarians do not understand the concept of vertical transmission. Also, U=U is a more complex topic and we decided that it couldn’t be addressed properly in the context of our goals and objectives of the campaign.”

There was, of course, no consultation with the community, dozens of whose members could help Lapierre do better than “with good treatment, many HIV-positive people are able to reduce the amount of virus in their bodies.” Some offered up plain language, tweet-friendly alternatives. U=U is all about simplicity, about simple language, after all.  As The Lancet put it, U=U is "a simple but hugely important campaign based on a solid foundation of scientific evidence. It has already been successful in influencing public opinion, causing more people with HIV (and their friends and families) to comprehend that they can live long, healthy lives, have children, and never have to worry about passing on their infection to others. The CDC officially backing the science behind the campaign is another key step towards U=U being the most important message of 2017 in the fight against HIV.

U=U is too complex for the public to understand, said the OAN, though.

The ad campaign was a success and accomplished its purpose” said Lapierre in his jaunty email to me. “Keeping in mind the original intent was to reach the average Ontarian, we are proud of what we accomplished.”

Not so fast, said many. An industry insider shot back with a widely circulated email to Lapierre that expressed concern about specific messages in this campaign, as well as the lack of consultation on the campaign development process. It said that it would not have been difficult – given that the OAN was working with a marketing firm, and could have drawn on the expertise of member agencies – to have come up with accessible wording targeted to the general public about the “U=U” message.

That is where the matter now stands. The community awaits a response from the OAN Board of Directors, at least some of whom, it is rumoured, are not happy.

What PositiveLite.com thinks

PositiveLite.com, as a member of a community we cherish and prefer to nurture, very seldom criticizes those whom we work alongside. Today we make an exception. In fact we have named three organizations that we think need to do better.

Ultimately they will do so. U=U has battle scars but always wins out in the end.

The point has been made though and it concerns the role of the community of people living with HIV. They are a force to be reckoned with when united in a common cause. They are smart, determined and have uncommon skills. They have exceptional leaders.

They have rightly demonstrated a lack of patience for organizations that, in 2018, still withhold the message that U=U or who talk about us in imprecise language that casts doubt about our risk to society.

U=U is so simple, so beneficial, so universal a message that there is no need for us to be divided on this. It can and should be a uniting force, a win for all concerned that leaves nobody behind.

About the Author

Bob Leahy - Publisher

Bob Leahy - Publisher

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.