Several weeks of intensely meaningful engagement,
and then this…
by Jeff Potts
I muse, as I tidy up this third and final draft, that it is a bit odd for a guy who lives with HIV and who works in the HIV sector (almost always has) to reflect on and write about a few weeks of full-on HIV engagement immersion. But, that’s the truth of it.
I’m a bit weary this Monday morning as we near the end of March (and fiscal year-end). It’s a good weary though. A weary that reminds me that I am alive and thriving, despite recent odds; an almost breathless weary that comes from a number of deep dives in my work with, for, and in service to the Canadian Positive People Network (the CPPN). March was a whirlwind month!
A few weekends ago, I joined the CPPN’s Board of Directors in Montreal for an intense retreat, during which we worked hard to punctuate our individual and collective commitments to the CPPN and its members from coast-to-coast-to-coast (more to come on that front). Last week, I found myself sitting at a table with some of the HIV community’s greatest minds who gathered (and will gather again) to strategize around how people living with HIV can (and will) light hot fires under the bums of “mainstreamers” so that we can end the epidemic. Last week, I shared space and time with a group of highly-motivated stakeholders and the kick-ass team at Realize (a special shout-out to thank Tammy Yates and Wendy Porch) to make sense of little-known news that (some) people living with HIV now have access to life insurance. Just the other day, wearing my ACO Board of Directors hat and a newly printed T-shirt, I sat in the front row of a full house where I was, once again, awe-struck by the words of Bruce Richman, Brittany Cameron, Bryan C. Jones, and Bob Leahy (SuperBob)… Undetectable equals Untransmittable… U=U damn it!
And then, there was this – an unsolicited surprise from my kid-brother, David Potts. David is the youngest of my five siblings and, without doubt, he is a virtuoso of the editorial variety in a way that I new was true but didn’t fully appreciate until the hairs on the back of neck stood up and took notice of the words you’re about to read. He’s my brother and I love him. He’s our ally, and I think you are going to love him too. Again, this brilliant piece was unsolicited. I didn’t know David was writing this until it was written. Hell, I had no idea that he was paying this much attention to our HIV world… but I am so grateful that he is!
Is the End of HIV In Sight? Yes! And No.
By David Potts
“Let’s make a law that gay people can have birthdays,
but straight people get more cake – you know,
to send the right message to kids.”
Bill Maher wrote that in his bestselling 2005 book, “New Rules: Polite Musings From a Timid Observer”. And honestly, I can’t think of an analogy which could more aptly encapsulate the gay rights movement (or any important social movement, for that matter).
Not only does it epitomize the tedium of its steps forward and backward, but it also captures the sardonic and slightly narcissistic (and wickedly funny) sense of humour from which the community has seemingly drawn much of its tenacity and resilience.
It’s okay to laugh sometimes too, as long as there is real progress which precedes it, and follows. But when there is finally a cause for unprecedented celebration– when it should be the time to laugh, like never before– and progress is being curtailed… It’s just not funny anymore.
Did you know that we can end the AIDS pandemic?
“It takes no compromise to give people their rights.”
― Harvey Milk
It has been a long time since those words were spoken.
And the gay rights movement has certainly come a long way since those early days of walk-in closets, “Twinkie defenses” and fist fights.
Now accepted– and thriving– members of society, the gay community has cautiously inched its way forward into an increasingly broad range of rights arenas: marriage and family, education, community, politics, sexual identity and gender norms…
And yes, even HIV and AIDS: a field in which the progress has surpassed everyone’s wildest expectations! But recent setbacks, still, are a stark reminder that the chains are no less apparent today, and that real change needs– more often than not– to be taken first by brute force.
“… For many of us, it feels like the HIV community
we’ve spent more than 30 years building is under siege…”
I am not a person living with HIV.
Nor am I a gay man, or a member of a serodiscordant couple (one of mixed HIV status).
But my brother, Jeff Potts, is all of these things. And that quote is from his own recent article, “Meaningful Engagement”, in which he expresses his ongoing dedication to the cause, and his gratitude for the community around him.
But this is not their battle to fight and win (or lose) alone, nor is HIV and AIDS merely an inconvenience confined to the gay community or to the charity infomercial ghettos of Africa…
There were 36.7 million people living with HIV in 2016 and 1.8 million of them newly infected.
That’s more people than there were in all of Canada that same year (roughly the population of the State of California). So who– on this Earth, in any shade of their right mind– can say it’s none of their business?
Ask yourself that question, as I repeat this: “we can end the AIDS pandemic.”
“We can now say with confidence that if you are taking HIV medication as prescribed, and have had an undetectable viral load for over six months, you cannot pass on HIV with or without a condom.” -- Dr. Michael Brady, Medical Director, Terrence Higgins Trust, London. (July, 2016)
That is not a misquote, or some careless typo.
And yeah: it’s as perfectly disruptive– as groundbreaking– as it sounds…
HIV: Undetectable Equals Untransmittable
The advent of this revelatory scientific conclusion erupted within the community, and sparked a new hope which spread out to the affected millions across the globe.
“Not since the introduction of Antiretroviral Therapy (ART) in 1996″, the Canadian Aids Society reflected in a position statement at the time,” has there been as significant a milestone as U=U (Undetectable Equals Untransmittable).”
And those are the two most important terms to take away from this article: “Antiretroviral Therapy, or ART” and “Undetectable Equals Untransmittable”. They are both of relative import, as one does beget the other, and together: they are the key to ending the AIDS pandemic.
Antiretroviral Therapy is the treatment of HIV using a combination of antiretroviral medicines which slow or suspend the rate at which the virus multiplies. ART results in an undetectable viral load– typically less than 50 copies of HIV per millilitre of blood– in the person living with HIV, effectively immobilizing the virus.
And Undetectable Equals Untransmittable.
U=U is the beautiful truth which has blossomed from the extensive body of scientific research amassed over the last two decades. An undetectable viral load means there is effectively zero risk of spreading the virus.
“Among serodiscordant heterosexual and [gay] couples in which the HIV-positive partner was using suppressive ART and who reported condomless sex… there were no documented cases of within-couple HIV transmission among 58,000 condomless sex acts.” — Dr. Alison Rodger, et al. JAMA.
“So you mean the person is healed?” A Kenyan student and activist, Kimutai Kemboi, writes of a conversation he had with a rather ordinary fellow Kenyan man.
This is not a silly question either… You can imagine the cynicism in his voice, the looming disbelief that we had suddenly unearthed the Fountain of Youth or parted the Mediterranean Sea.
Kemboi makes note of his cold tea, and his response: “The person is not healed but is virtually ‘negative’ since he cannot pass on the virus. An HIV test will still be positive though!”
“This must be a miracle!”
And should it not be given such a label? Isn’t it as closely akin to a miracle– especially in Africa– as anything we’ve seen in recent times?
Yes, of course it is! There hasn’t been much to dance about at all since the end of Apartheid… and I could argue that even this– and back further: to the end of the Atlantic slave trade in the 1860’s; then the Nigerian Youth Movement in 1933, then the decolonization efforts of the 50’s and 60’s– was not necessarily good news, but just the sweet, merciful burning of the bad.
The end of HIV and AIDS would be no different.
And– much like the first moments after a genocide or a World War– those left behind won’t be laughing and dancing, but, rather, picking up the broken things and reflecting mournfully on all that which has been lost forever.
But still yes! A thousand times, yes!
A miracle, indeed.
So What’s the Problem?
Right. That’s a great question, isn’t it?
Should we not be done?
Three decades of death and confusion, and we now have a way to give normal lives back to those living with HIV (and a way to end it all in just a few short generations)…
So why is this guy still writing, for Christ’s sake?!
Believe me: I really wish that was the end of it. I wish there was no nasty footnote to such a remarkable human story. But we have four problems, actually…
#1) U=U in the News
When was that?
The results of the research were thought to be conclusive in 2008, when the Swiss authorities announced their endorsement. These results were confirmed with further research in 2016, and then were found irrefutably conclusive in July of 2017. ““When [ART] results in viral suppression,” reads a statement issued by the U.S. Centers for Disease Control in September, which confirms, “it prevents sexual HIV transmission.”
And an International Consensus Statement in October, signed by more than five hundred scientists and organizations in almost seventy countries, gave additional public validation to the U=U principle.
But, again, where were the news headlines?
Where was the fanfare?
One of the most important medical and human interest stories of the last century, and it popped and dissipated in the mainstream media faster than a silent fart on the Senate floor! Can anyone explain this?
Otherwise known as bad juju…
Call it whatever you like, but there is a longstanding preconceived notion that people living with HIV– and dying of AIDS– are nothing but a bunch of ridiculously infectious gay men and needle junkies.
Newsflash: 1.8 million of the people living with HIV are children, and one of the more susceptible demographics right now is young women aged 15-24. The faces of HIV and AIDS are our own (and our friends, and families). That needs to be recognized.
One million people died of AIDS-related illnesses in 2016 alone.
35 million in three decades! That’s a lot of faggots and drug addicts, wouldn’t you say?
Here’s an idea: let’s stop being assholes (no pun intended).
“HIV stigma is a public health crisis,” Bruce Richman, the founder of Prevention Access Campaign and the pioneer of the U=U movement, said in a recent interview, “and yet many people in positions of power are still sitting on their hands, overstating risk and not sharing this life changing information!
Richman was understandably frustrated and disheartened, upon discovering the uninfectious nature of his own suppressed HIV virus, to find himself surrounded by widespread ignorance about this new scientific reality.
Untransmittable, he learned, does not necessarily mean unchanged.
The world was still nonetheless stigmatized.
“We need… to move away from controlling people with HIV,” he advised, “and toward trusting people with HIV.”
This is a major problem.
And it has always been a problem, a labyrinth of ambiguous legal interpretations attempting to figure out and properly define the implications of possible HIV transmission during “high-risk” activities…
The resulting number of collective years of jail time served for HIV non-disclosure is simply staggering!
The landscape has become especially slippery now too, with the advent of undetectable viral loads and their consequently uninfectious infection.
Here in Canada, our Department of Justice issued the following statement in December of 2017:
“The criminal law should generally not apply to persons living with HIV who: are on treatment; are not on treatment but use condoms; or, engage only in oral sex (unless other risk factors are present and the person living with HIV is aware of those risks), because the realistic possibility of transmission test is likely not met in these circumstances.”
That should certainly help, right?
One would expect the legal, health and human rights positions of National governments to dictate those of its constituents accordingly…
But, as the Canadian Coalition to Reform HIV Criminalization (CCRHC) admonishes in its Community Consensus Statement, “These conclusions need to be reflected in clear prosecutorial directives issued by federal and provincial Attorneys General.”
There are likely to be contradictions and inconsistencies just like this everywhere you look…
Much of the world is now shifting with these sands of progress, but it is a very complex problem– one which intersects a myriad of political, social, economic and geographic borders– and solutions need to be found which are tailored to individual communities and groups.
In each and every case, however, the CCRHC is right: “HIV non-disclosure must be removed from the reach of sexual assault law.”
#4) That Which Makes the World Go Round
After everything has been said, and the finish line is but a few breaths away…
Money, of all things, could be the straw that breaks this camel’s back.
I’ll say, first: there is money.
Governments, organizations and people are helping. Billions and billions of dollars have been spent over the last three decades, and it has obviously carried us this far.
There are many layers to the big HIV and AIDS funding picture– from domestic initiatives in individual countries for research, treatment and support, to bilateral and multilateral International efforts for developing countries, to private and innovative philanthropic organizations– and they all play a vital role in the fight.
To give due credit (and credit is due):
The United States has been the single largest financier of global HIV and AIDS support, by a huge margin, followed by the United Kingdom, France, Germany and Japan.
The Bill and Melinda Gates Foundation is the leading philanthropic proponent of International efforts, focusing consciously on high-priority areas. And UNITAID, as well, is doing some very innovative and exciting work for the cause. One good example of the positive– and cooperative– impact these organizations can have is the emergence of HIV self-testing, which is being facilitated by both: the important research and testing done by UNITAID; and the thoughtful spending decisions made by the Bill and Melinda Gates Foundation.
As I said, there is an effort being made…
But it’s not enough to really get ahead of the problem.
And, to further fan the flames, the global sense of urgency has waned in recent years– along with funding levels across the board– and looks likely to continue this trend at a time when we should be pushing for the finish line.
Developing countries are struggling to find effective domestic responses to International funding cuts… The political landscape is a constant threat to the stability of the HIV and AIDS infrastructure, as we know it… And even domestic funding in our developed, socialized countries can often be lacklustre and challenging.
Here in Canada, for instance, HIV and AIDS is being somewhat marginalized, as it has been grouped together with other sexually transmitted and blood-borne infections. “So money available to fight HIV only is now spread wider and more thinly.” Bob Leahy, an award-winning social commentator and the publisher of Positive Lite Magazine, reports in a recent article.
“Thinner still,” he explains, “as more agencies were invited into the fold in the latest funding process which is now the subject of so much discussion.”
But the discussion must stop, and we need to turn this around right now!
As I said, the finish line is in sight. And any true competitor (or hare) will tell you: races are lost simply by supposing that you’ve won. So run with every fibre you can flex– even when it seems you’ve won– as if all will otherwise be entirely lost.
The loss in this case is not pride, or a prize: it’s our control of an already precarious situation… And, inevitably, countless millions more lives in the process.
Developed countries need to immediately increase their domestic funding to whatever level is needed to: stop the spread of new HIV infections, identify all its citizens living with HIV, and provide ART treatment and related support to all of these people.
And then the developed world needs– as one unequivocal whole– to do the exact same thing for the developing world.
And that is, thankfully, all she will have written about HIV and AIDS.
(Amen. The end… Let us all pray in Her name.)
What Can You Do Right Now?
First and foremost, before saying another word: THANK YOU for asking.
And you’ve already taken the most critical step: becoming aware of the outstanding progress made in the world of HIV and AIDS! You now know that, with ART treatment, an undetectable HIV viral load eliminates the risk of sexually transmitting the virus.
So there are three very simple– and yet very powerful– things you can do right now:
Spread the word about U=U, and help dispel the stigma which surrounds HIV and AIDS to this day. Start discussions about the people and organizations I’ve mentioned, share this article with every thoughtful person you can find. And go further, read more content… Connect with people, if you feel connected to the cause.
Get tested, and urge everyone you know to do the same. One in every five people living with HIV, as we speak, is not even aware of it. And the two keys to ending the pandemic are, after all: awareness and treatment.
And Number Three…
Give however much time and money you can afford to the good people and organizations around you engaging in the fight. This can certainly mean donating to the bigger philanthropic initiatives, like the Bill and Melinda Gates Foundation and UNITAID… but think more locally too, wherever you are!
In our own developed countries, smaller grassroots agencies– like the Canadian Positive People Network and Realize here in Canada, and Bruce Richman’s Prevention Access Campaign in the United States– take a more personal, community-based approach... Not only do they provide support and services like building capacity and promoting accessibility to testing and treatment services, but they are dedicated to fostering meaningful engagement and positive change for all people living with HIV and HIV co-infections.
My brother, Jeff Potts, who introduced earlier, is the Executive Director of the Canadian Positive People Network (CPPN), the only national, independent network by and for people living with HIV in Canada.
I am more than proud to say that, of course...
But I thought it also imperative that I disclose my one related affiliation to the cause.
So Let’s Get This Over With!
Is it too optimistic to say that we can completely end the AIDS epidemic in the foreseeable future?
There are still gaps in our new super powers, so to speak: finding and allocating the necessary funding; getting ahead, and staying ahead, of drug-resistance; HIV prevention and education, in general; widespread HIV and viral load testing; manufacturing and mass administration of ART treatment; and further research into the prevention of mother to child transmissions.
So it won’t be easy (as it never really is).
But it is possible.
Don’t you think it’s possible? And if we can agree that it is possible (one last pause to appreciate a world in which it has been made possible), then the value in keeping our hopes up high– at this point, knowing what we know– far outweighs the futility.
“… If we make the right decisions and the right investments now, the end of AIDS can be within our grasp… The post-AIDS world will be very different from the one we know today… It will be a world in which every child is born HIV-free to healthy parents, and any child living with HIV receives the treatment, protection, care and support to survive and thrive into adulthood and old age.” -- United Nations AIDS
Twice now I’ve mentioned my brother, Jeff, I realize. But he also happens to be an exceptional writer, so I thought he could have the last word…
“Resilience is, perhaps, more about what we’re living for than it is about what we’ve lived through,” he contemplated in a recent piece which talks about the future– both of his own organization, and of the much bigger picture.
“It’s less about learning lessons,” he continues, “than it is about living the lessons we’ve learned along the way.”
I think what he’s trying to say, albeit much too diplomatically– though he will correct me if I’m wrong– is closer to: Let’s stop being assholes!
So, yeah… what he said.
Cheers: to people helping people, to real progress…
and to the equitable distribution of birthday cake.