I don’t think that in many years of editorializing for PositiveLite.com I have ever criticized a community-based HIV organization, much less one that has a specific mandate to represent people living with HIV everywhere. We tend to be kind to each other
I want to be kind but this week was difficult. GNP+ was in the news - and not in a good way. I think they acted badly. It got to me, also not in a good way.
Many will not know the GNP+ name. The initials stand for the Global Network of People Living with HIV. It’s an organization that was founded in 1992. It has nine staff members, according to its website and is headquartered in Amsterdam. I went to their Positive Living Summit in Durban, South Africa in the summer of 2016. It was a good experience and I met nice people.
Their website says they are about improving the quality of life of people living with HIV through global and community advocacy, and “knowledge management.”
I‘m not sure what “knowledge management” means – it’s a term we don’t often use in our community – but perhaps we just got a taste of it. Again, not in a good way.
Yesterday GNP+ released a position paper “On Fear, Infectiousness & Undetectability” It’s written, seemingly intentionally, in unusually vitriolic language that it uses to attack the community-led U =U Prevention Access Campaign.
How vitriolic? GNP+ calls the U=U campaign “slick marketing”. GNP+ says “it traffics in the currency of fear, and builds-on rather than dispels normative assumptions about the bodies and identities of PLHIV as nothing more than primary (albeit, controlled for now) vectors of disease.”
Its tortured prose (who writes this stuff, anyway?) characterizes the U = U campaign as “a revival of the rhetoric of PLHIV as vectors of disease (i.e. we work with you so that you don’t spread the disease).” It doesn’t seem to care that many/most people living with HIV don’t see themselves as initials, or like being an acronym, but that’s beside the point. (For the record, PositiveLite.com will never refer to people living with HIV as an acronym.)
Oddly all this invective comes framed within a commendable treatment-first, prevention-second perspective, one that acknowledges not all have access to treatment, that not all can be undetectable, and where people who are detectable must not be stigmatized.
Clearly though GNP+ didn’t do their homework, or consult with the Prevention Access Campaign itself or they would have been steered towards the U = U campaign website and its key values. In doing so they would have seen a remarkable similarity with their own. Look, for example, what the U = U website has to say, even more clearly expressed than on the GNP+ website. .
“Community partners agree that the health and prevention benefits of viral suppression are platforms to underscore the importance of universal access to treatment and care for all people living with HIV worldwide.” And. . .
“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.”
These are exactly the points that the GNP+ position paper makes, but without the attacks on the integrity of the U = U campaign, without the “vectors of disease”- related accusations, without the pompous double speak.
So I’m scratching my head. How could two organizations, both led by people living with HIV, good people too, with common goals but different ways of expressing them, be so far apart in the way they present themselves? What kind of process led to such a bizarre statement from GNP+? Why didn’t they share their concerns with the U = U people before the position paper was released? (I can’t think of anybody more accessible, or eager to accommodate community input, than PAC’s Bruce Richman.) What kind of community consultation was involved? Any at all? Wasn’t the GNP+ statement seen as divisive in the extreme, trafficking in an "us vs. them" dialogue that nobody wants and without an ounce of solution in the mix?
On Facebook yesterday, I called out the GNP+ position paper as a textbook example of how NOT to do HIV advocacy. Others were not so kind. Here’s a very small sample. .
“Disparaging the U=U campaign is demoralizing to all those involved, discredits the fine work that GNP+ does throughout the world, and only seeks to divide the community.”
“The GNP+ statement is shameful and disrespectful of the work of people living with HIV in North America who seek only to inform other people living with HIV on the new science and how it impacts our health and to combat stigma”
“This is not how to build community.”
“This screed reminds me more of a tantrum by a teenager who came in second in a popularity contest, as opposed to the thoughtful work of dedicated activists. The rant demonstrates that members of the GNP+ Board DO NOT represent the interests of individuals living with HIV, for they cannot deign to make serious inquiries with the sources of their concern before launching their bluster.”
“This was hurtful, unprofessional, and shortsighted.”
“Why someone would use their energy to willingly say so many hateful things to try and destroy a campaign as powerful as U=U (a campaign which empowers PLHIV, obliterates HIV stigma, and is the leverage needed to ensure universal access to treatment for the betterment our health while also preventing new HIV transmissions) and create division and discourse without first engaging in a dialogue is unconscionable to me. Any person who can shamelessly and proudly spew such hate in an attempt to rob thousands of their renewed hope and the feeling of empowerment gained as a result of the U=U message is extremely selfish and has zero integrity”
And on and on and on. The community was enraged like I have never seen it before. One GNP+ board member even broke ranks to post this message on his Facebook timeline: “Mourning the Loss of Global HIV Leadership (February 8, 2017)” and the accompanying black ribbon symbol quickly spread throughout Facebook like wildfire.
The GNP+board member, Christian Hui, well known as chair of Canada's national organization for people living with HIV, CPPN, subsequently tendered his resignation from GNP+.
It was one hell of a hullabaloo. Earlier, shortly fter it appeared on the GNP+ website, a fire-breathing Richman argued with GNP+ executive director Rico Gustav, in a new York- Amsterdam early morning phone call, to take the GNP+ statement down while both sides talked. Richman was unsuccessful – and devastated. (At the time of writing the statement still stands although the GNP+ board has agreed to stop promoting it.)
What does all this mean?
Temporarily at least, with GNP+ breaking away from the slew of prime-time HIV organizations who support U = U, it seems like we have lost a credible voice, one that represents all people living with HIV in a respectful way and one that values the infinite variety of their needs, their views and their aspirations. That’s deeply saddening.
Or maybe it was just a misstep on their part?
In any event, it’s still possible to admire, if not its board’s decision-making prowess, the solid GNP+ platform, its deep commitment to human rights, its inherent insistence that nobody be left behind in the rush towards 90-90-90. This is a time that we all need to recognize – and I think we do - that in promoting the benefits of an undetectable viral load as we must, we need to acknowledge and fight for those not on treatment – by choice or by necessity. Stigmatizing of anybody with HIV, whatever their viral status, is absolutely and unequivocally wrong. We need to recognize, more so than ever, that treatment issues in prosperous countries are worlds apart from those in the global south. Sometimes one size fits all messaging doesn’t work and may need fixing or locally adapted.
We can do all those things without attacking each other or the U = U message or those who promote it; they are not unthinking privileged people who care about nothing but themselves, about only the undetectable. They are caring, imperfect and incredibly dedicated. Any rhetoric which implies otherwise needs to be silenced.
Somehow we have got into an either/or situation here – why I don’t know, because it is unnecessary – that has the potential to create a divide between what we sometimes crudely call “have” and “have-nots”, between the global north and the global south, pitting our brothers and sisters around the world against each other. That has to stop.
This is who we are. We are people living with HIV. We live in the era of the menace that is Donald Trump. We are vulnerable to attack more than ever before. We cannot – just cannot – see divisiveness weaken our community.
Let the healing begin.
Love and Light.
Internationally respected HIV writer Gus Cairns left the following comment on thr GNP+ facebook page not long after. In it, he explains why, past achievements notwithstanding, the recent GNP+ action is "a disgrace".
"I respect the achievements and work of GNP+ and in particular its proven record in researching and combating the stigma against HIV. And it is precisely because of this that I feel GNP+’s statement is a mis-step and does not help the credibility of the only global network specifically set up to fight for the rights of people with HIV.
The statement strongly criticises the strategy of the Prevention Access Campaign – whose “U=U” (Undetectable = Untransmittable) campaign aims, and is having success in – changing forever the way organisations and people with HIV themselves talk and think about viral undetectability and infectiousness. To declare an interest, I was one of the advisors who helped formulate the campaign and was one of the two people who suggested U=U as a tagline.
The goals and strategy of HIV activism are not set in stone. While our demands for justice and respect have driven access to the medicines that have saved many of us (including me), at the same time the effects of antiretroviral therapy (ART) must themselves change the activist agenda. Politics and technology drive each other.
One of the ways the effects of ART have most profoundly changed the politics of HIV is in prevention. Apart from saving individual lives, one of the most profound benign side-effects of HIV is to make people with HIV who are fully virally-suppressed non-infectious. While this may be a desirable public health result, its most profound effect may turn out to be its part in breaking down the stigma against people with the virus. To say that U=U “traffics in the currency of fear” is in my opinion the opposite of the truth – it aims to help demolish that fear.
I don’t see how it is somehow oppressive to people with HIV to explain that one of the advantages to taking ART is that you will be non-infectious. I don’t see how this discriminates against people who are in the unacceptable position of not being able to access treatment or viral load monitoring. Rather, it offers them and all of us hope. It is my prediction that this hope will strengthen our outrage at the injustice of non-treatment and lead to a new surge of activism - as I have seen with PrEP.
It also offers hope on a personal level. A number of surveys of people with HIV have shown that knowing that they can't pass the virus on is one of the most valued and desired aspects of taking ART and in some cases THE most valued and desired one.
One of the most oppressive aspects of living with HIV is the fear people have of us and the way we are therefore cut off from fulfilling sexual and intimate relations. It makes us feel dirty and dangerous - as vectors of disease. It isolates us, and isolation is the biggest single predictor of both poor mental health and social ostracism.
Society WANTS to maintain this fiction that we are dangerous and unclean - hence the opposition, ever since the Swiss Statement of 2008, to spreading the news that "Undetectable = Untransmissible". HIV is a convenient way for society to damn the sexually and behaviourally non-conformist. It is a perception reinforced in many countries by criminal sanctions against non-disclosure.
In this context, to inform people with HIV that once virally suppressed, others have absolutely nothing to fear from them, is a spur to action. Little is more likely to encourage people to seek and adhere to treatment; to encourage them to fight for treatment if it is not available; and to fight for vital viral load testing if that is not available. Little is more likely to help demolish the stigma against HIV than spreading the U=U news to their partners, family and community.
U=U is a very simple message. I agree that it says nothing about the structural, economic and societal barriers that mean some people can't access treatment. It doesn’t intend to. It is a single piece of information. But its simplicity is its strength. It drops into the consciousness of people with HIV and their supporters a piece of knowledge that can only strengthen the political and moral case for equitable and early testing and universal treatment at all CD4 levels.
There is, we know, a case too for universal treatment in terms of individual health, as the START study showed. But if you don't get someone with a CD4 count of 500 virally suppressed, their health is unlikely to suffer immediately. What can be transformed, however, if they do become virally suppressed, will be their self-perception as unclean, their social image as dangerous, their political stereotype as wicked.
U=U removes the status of the Body Positive as being a body apart.
To imply that it is oppressive to people with HIV to campaign strongly for the public adoption and dissemination of what I see as a message of aspiration and defiance, is to fail the community of people GNP+ claims to represent.
Acting in mutual solidarity to fight society's wish to oppress is a just aim, but by itself has a bad record in terms of twisting the arms of those in power to provide cheap viral load tests, address health system corruption, and conduct hard negotiations with drug companies who try to restrict access to cheap generic drugs. But U=U drops into that political balance another, hugely weighty factor in our favour that will influence health systems globally to provide people with HIV what they need above all - treatment.
Yes, treatment as prevention is an important consideration in terms of public health. But as a person living with HIV, the knowledge of my lack of infectiousness is also a very important part of my individual health. It adds hope, motivation and agency to my reasons for taking HIV treatment.
Survival is not enough. We need to live lives of value, and U=U helps me do that.
To oppose a campaign that aims to spread that knowledge to other people with HIV is, in my opinion, a serious mis-step. It reinforces an old-fashioned politics of HIV. It sacrifices the needs of the people it represents in favour of a narrow concern with equality. And, ultimately, to fail to endorse a campaign that is so effectively communicating a piece of liberating and lifesaving knowledge to those who need it most is a mistake - and a disgrace."
About Gus: Editor at Aidsmap.com, prevention campaigner, psychotherapist, HIV+ since 1985