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Living with HIV


The U=U movement: a global phenomenon

Thursday, 27 April 2017 Written by // Bob Leahy - Publisher Categories // Activism, International , Living with HIV, Opinion Pieces, Bob Leahy - Publisher

The Prevention Access Campaign is scoring impressive gains around the world – but challenges still remain, writes publisher Bob Leahy

The U=U movement: a global phenomenon

The Supporters

The Prevention Access Campaign’s website is the hub of the ubiquitous Undetectable = Untransmittable (U=U) campaign. It’s impressive. Slick marketing, its detractors like to label it. Bruce Richman, the campaign’s founding light, would prefer to call it professional. And it is: campaign posters generated by supporting agencies from the USA, the UK, Italy, France, Greece, the Czech Republic, The Netherlands and Turkey slide in and out of view. There are endorsements from the world’s leading HIV scientists and luminaries. There is the science behind U=U and there are answers to frequently asked questions.

Perhaps what will impress most though is a Community Partners page listing the names of over 150 agencies from around the world in 23 countries who have lent their name to the campaign – big names like The International AIDS Society, AIDS United, Terrence Higgins Trust,, GMFA, GMHC, Housing Works, the International Community of Women Living with HIV, MSMGF, NAM (aidsmap), the Positive Women's Network, San Francisco AIDS Foundation, The Well Project and many more.

Canadians will recognize names like CATIE, The Canadian AIDS Society, CPPN, AIDS Action Now!, ACT (The AIDS Committee of Toronto), Toronto PWA Foundation, the Canadian HIV/AIDS Legal Network, CTAC, ICAD, ICAS, ACCM, The British Columbia Centre for Excellence in HIV./AIDS, Health Initiative for men, PASAN, Realize, YouthCo and of course, the first Canadian organization to sign on.

It’s an impressive achievement, this level of support for a barely one year-old initiative with no paid staff and precious little money, relying on the talent, determination and chutzpah of a small core of volunteers - poz advocates determined to get the word out, where before the world was silent, that if you maintain an undetectable viral load, you will pass on HIV to no one sexually.

The detractors

Not that the list of organizations “jumping on the bandwagon”, as one detractor put it, is inclusive of all AIDS organizations. “You can’t say zero risk” say some. “What if there is an outlying case of HIV transmission” say others. “Can we trust people to be adherent? Won’t there be an outbreak of sexually transmitted infections (STI’s) if people see this as a license to bareback? Doesn’t this message stigmatize those who can’t attain undetectable viral load? And what message does U=U send to people who don’t have access to treatment or regular viral load tests? Will this help or hurt our efforts to end criminalization of HIV non-disclosure?”

Columnist Mark S. King summarized the negativity coming from within. “This skepticism from our own community reduces people with HIV, again, to a problem that must be managed’ he said. “It suggests that those of us who have achieved undetectability don't have the judgment to keep taking our medications or to see our physician regularly to be sure our treatment plan is still effective. It keeps us in the role of untrustworthy victims unable to make decisions that will keep the rest of you safe from us. What infuriating, stigmatizing nonsense.”

Perhaps the most persistent challenge to the campaign remains from those organizations with a global mandate who feel U=U leaves too many out in the cold. A very public spat between the U=U campaign and the Global Network of People living with HIV (GNP+) earlier this year saw GNP+ characterize the campaign as “a revival of the rhetoric of people living with HIV as vectors of disease (i.e. we work with you so that you don’t spread the disease)” but whose more meaty accusations centred largely around the need for a “treatment first, prevention second” approach as well as around the treatment access challenges of the global south.

GNP+ subsequently revised its position; here is what said at the time

“Central to their (GNP+) argument is the need for people living with HIV to be made aware of BOTH health AND prevention benefits of successful antiretroviral therapy. The reality is that globally just less than half the number of people living with HIV have access to treatment. The statement stresses ongoing dialogue. “GNP+ remains committed towards advancing the use of inclusive language that prioritizes the health, safety and wellbeing of all PLHIV, regardless of their treatment access and/or detectability status within a framework of positive health, dignity and prevention.”"

The problem here for some is that U=U is Treatment as Prevention (TasP) in another name. Arguments against treatment as prevention are not new although they lost considerable momentum in many quarters in 2015 when research known as START indicated early HIV treatment was good for you. CATIE said then “the benefit of starting ART early in the course of HIV disease is clear: a large and significant reduction in the risk of serious infections and cancers.” But qualms about the respective priorities of treatment vs prevention persist in some quarters and are perhaps magnified in the context of global north vs global south disparities in access to treatment.

The global south

The concern voiced by some is that for those who do not have access to HIV treatment, or even regular viral load testing, particularly in the global south, the U=U message is not only irrelevant but stigmatizing. It’s not enough that the Prevention Access Campaign says this, “Community partners agree that treatment is a personal choice, that treatment is first and foremost for personal health, that there are unjust barriers to accessing treatment, that not all people living with HIV will achieve an undetectable viral load, and there is no place for stigmatizing anyone living with HIV at any viral load.” Some want a stronger commitment to pursuing treatment access issues,

Not that some representatives of the global south haven’t come out in support of the U=U campaign. Community partners include, for example, the Desmond Tutu HIV Foundation, Civil Society for HIV/AIDS in Nigeria, ABDGN - African and Black Diaspora Global Network on HIV/AIDS. ICASO, and the International Community of Women Living with HIV.

Increasingly, too, individuals from the global south are showing support for the U=U campaign on social media, busy too promoting the value of having an undetectable viral load.

Kimutai Kemboi is a young man from Nairobi, Kenya. He told me a good number of people from his country are on medication, although stigma is sometimes a barrier to accessing and taking it. Local policy is for viral load testing at the six month mark. He feels the U-U message will be “of great impact” and that “it will make it more attractive to be on treatment.” How does he feel about being undetectable? “I’m confident about it because I know medication is doing good on me and that I can lead a normal life like any other person. I’m also happy that I can marry a negative wife and bear negative kids with none of them becoming positive….It also acts as a testimony to others out there.”

William Matovu, 22, is a peer educator from Kampala, Uganda. He posts his home-made U=U signs on Facebook regularly (right). I asked him about the state of treatment access in his country. “Basically not all of them are on medication because most of them are still ignorant about the disease, especially those who live in rural areas” he says.  So is the U=U message helpful to make them understand the benefits of treatment, I ask? “Yes” he said. “Our organization goes out to different communities and we sensitize them about HIV in general and the benefits of good adherence.” What about viral load tests? “What I do as an advocate I tell them to ask their doctors to tell them to test their viral load coz it's everyone's responsibility to have it and they also a have a right to ask for it, so my job is to encourage them to do so.”

What does William think of the U-U campaign? “Yes U=U is very important coz it's sending out a great message of promoting good adherence and if it is maintained well, it makes the viral load undetectable in the blood stream and if you can keep the pace of taking your drugs you can't transmit it to your sexual partner.”

Catherine from Zambia says “knowing that I’m not infectious has helped me have a positive feeling about myself because I don’t perceive myself as a danger to others. I no longer feel bad about myself. As for viral load testing, we do it every six months.”

South Africa’s Desmond Tutu HIV Foundation said in a March 2017 statement “Undetectable HIV is Untransmittable. HIV-positive people with an undetectable viral load are healthier and much less likely to infect other people. If everyone took steps to have an undetectable HIV viral count, then lower rates of transmission could help stop the spread of the virus.”

They add “There is a need for increased access to viral load detection tests in Sub-Saharan Africa. It is recommended that everyone get an HIV test, but it is recommended that sexually active gay and bisexual men may benefit from a test every three to six months. Other Sub-Saharan countries, like Malawi, only recommend viral load testing every other year for persons on antiretroviral therapy. Guidelines like these that don’t provide timely viral load monitoring are a huge barrier to preventing the spread of HIV. Knowing that U=U is one step. The next is ensuring that everyone can reliably monitor their viral load.”

Linda-Gail Bekker, Chief Operating Officer at DTHF, comments that “In this era of ART access for all, it is important to realize that those individuals who take their treatment and are virally suppressed are very unlikely to be infectious – and this for them is wonderfully liberating!" 

The Prevention Access Campaign’s Bruce Richman is sometimes annoyed when those representing the global south question the value to their constituency of U=U messaging. “We see these same kinds of issues along with international development's form of colonialism and gatekeeping when well-meaning folks do not want this information shared in the global south. We fully trust that our U=U community partners and activists who are experts on HIV in many areas of the global soith will share U=U in ways that benefit their communities.”

April 23, 2017, NYC: U=U Dance Party to End HIV Stigma at the AIDS Memorial with Housing Works & NYC Department of Health & Mental Hygiene  

Meanwhile the U=U campaign marches on. Richman maintains a busy schedule. Last week there was a celebratory dance party in the streets of New York which saw the campaign partner with Housing Works and the New York City Department of Health. The week before that saw Richman on a speaking tour encompassing stops in Toronto and Montreal with more Canadian visits planned. New community partners sign up every day from all around the globe. 

It’s a success story like few others but not without challenge for its organizers. Says Richman “This power structure in this field needs to trust people living with HIV to make decisions about our health and our sexual and reproductive lives. We need honest and meaningful information to make those decisions. That's a basic human right. It harms us and thwarts efforts to end the epidemic if the field continues to control people with HIV like statistics and test subjects.”  

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