21 April 2016

La manif aussi soulignait un changement de paradigme

Nous parlons beaucoup du changement de paradigme en lien avec la lutte contre le VIH/sida. Ce changement se trouve dans le déploiement des antirétroviraux (ARV) et leur impact sur la transmission, soit en contrôle de charge virale, soit en prophylaxie pré-exposition (PrEP). Si tous les pays semblent être d'accord sur le déploiement des ARV en traitement, des défis restent pour l'accessibilité des la PrEP. Et cela vaut une manifestation à la session d'ouverture de la conférence AFRAVIH2016 à Bruxeles.

« PrEP PrEP PrEP, PrEP maintenant; PrEP PrEP PrEP, PrEP partout »

Ce slogan, scandé par des dizaines de militants et militantes qui montaient sur scène, a résonné comme des slogans d'autrefois, mais avec des différences qui méritent d'être soulignées.

Au début de cette lutte, nous étions en état d'urgence partout. Aucun traitement efficace identifié, de nombreux gouvernements négligeant ou même refusant d'agir. Dans ce contexte, notre militance était aussi sauvage que la situation : imposition de notre présence, gestes gênantes pour ceux qui avaient le pouvoir sur nos vies, autant médecins que décideurs. Qui n'a pas des souvenirs d'actions de simulations de mort dans la rue et devant les décideurs? Lors d'une conférence internationale à Montréal, les militants lançaient des condoms à l’archevêque catholique qui prêchait contre l'utilisation de cet outil incontournable à l'époque où on n'avait rien d'autre. La montée sur scène n'était pas accueillie, mais décriée. Des médecins et autre scientifiques ont affirmé ne pas avoir d'intérêt à assister à des futures conférences si les militants prenaient autant de place.

Le 20 avril 2016, tout une autre réaction.

Oui, il y avait les employés du centre de congrès qui exerçaient leur pouvoir sur les lieux : affiches enlevées, avertissements concernant le contrôle des ballons d'hélium portant le message PrEP. Si c'était ces employés qui avaient le contrôle sur ce qui se passait, la manif n'aurait peut-être pas eu lieu.

Mais ce n'est pas les employés d'un centre de congrès qui ont le mot final sur ce qui se passe à une conférence sur le VIH/sida. Après nos débuts dérangeants pour plusieurs, nous sommes devenus des alliés des scientifiques et des médecins traitants, et eux, ils sont devenus à leur tour nos alliés. Nous avons appris à travailler plus en concertation, nous pour exiger de l'action officielle, eux pour fournir les bases scientifiques de meilleures décisions. Souvent aussi la différentiation nous/eux ne se tient pas : des médecins font partie des militants, des militants deviennent chercheurs.

Pas de surprise, donc, qu'on a trouvé un accueil plus intéressant en 2016 qu'en début de l'épidémie. Toute un section de sièges réservés pour les militants et militantes qui allaient prendre la scène sur un signal prédéterminé, des applaudissements de la salle et une reprise du message par le maître des cérémonies. Loin d'être des intrus, nous étions plus que bienvenues.

Pas de surprise non plus que les militants et militantes ne sont pas arrivés en cachette, mais portant fièrement les chandails de cette action concertée, des pancartes en main. Nous nous sommes installés dans la section réservé pour nous et nous avons attendu le signal à la fin de la dernière présentation — présentation d'une des nôtres — pour se lever en « prendre » la scène, sans résistance.

Maturation ou instrumentalisation?

Le contraste des manifs des années 1980 et 1990 et celle de cette semaine est dramatique. On peut se demander si nos tactiques ont évoluées en fonction de la maturité de notre mouvement, ou des leçons apprises dans la maximisation de notre impact sur des résultats ou bien si nous nous soumettons à un certain contrôle des nos actions pour ne pas trop déranger ceux qui contrôlent les leviers du pouvoir.

Le test de notre capacité de s'indigner se trouvera dans nos réactions à la lenteur des certains gouvernements et le refus d'autres à rendre disponible l'outil indispensable de prévention qu'est la PrEP partout et maintenant, comme nous le demandons. Sommes-nous toujours capables d'actions dérangeantes?

09 February 2016

Nouveau…toujours meilleur?


(An English version of this article will be published on PositiveLite.com, link to follow)

Chaque fois que je vois les gens s’exprimer en superlatifs, je sais que ce que je vais lire va être bourré de simplification excessive et d’enthousiasme mal placée. Parfois la phrase me mène de mes lectures sur Facebook vers une liste sans fin qui est presque sans exception décevante plutôt que révolutionnaire, et même pas divertissante. Quand ça arrive dans le domaine du VIH, cette préférence pour tout ce qui est nouveau en rejetant tout ce qui est venu avant n’est pas très utile.

Soyons clairs que je suis aussi enthousiaste que tout le monde pour la PPrE (PrEP pour les anglophiles) et pour la preuve qu’une charge virale indétectable élimine pour toute fin pratique la transmission du VIH. En fait, je pense qu’il s’agit des meilleures nouvelles depuis l’arrivée des traitements efficaces dans les années 1990. Ce n’est pas, par contre, une raison de tasser toutes les autres stratégies et tous les autres outils pour tout le monde tout le temps.

La première chose qui m’a provoqué à cet égard semblait commencer assez doucement il y a quelques mois. J’ai assisté une pièce de théâtre écrite par un groupe d’étudiants sur l’histoire d’un organisme VIH après une série d’entrevues de personnes qui y étaient impliquées. Les thèmes étaient très familiers — l’horreur des années 1980, l’espoir de l’arrivée des traitements, l’importance à ce jour d’un environnement accueillant et le soutien des pairs — mais la suite m’a bouleversé. Une des personnages sur scène a traité la stratégie condom comme étant « une vieille approche basée sur la peur ». Quoi?

Je réaffirme mon ouverture d’esprit pour la PPrE et sa place parmi nos multiples stratégies et outils, mais n’oublions pas l’aspect multiple : la PPrE s’ajoute à notre boîte à outils, elle ne prend pas la place de toutes les autres approches. Je comprends aussi que pour plusieurs le condom n’a jamais été une stratégie très aimée, même quand la seule autre option était l’abstinence, mais peur? Vraiment? Comment expliquer les nombreux hommes gais et bisexuels qui déploient la stratégie condom, souvent dans leurs vies sexuelles autant prolifiques que joyeuses, et qui demeurent séronégatifs après toutes ces années? Notons que ces hommes ne semblent pas très craintifs non plus.

Mais mon colère et ses causes n’arrêtent pas là. Non, une autre histoire incroyable m’attendait sur le site anglophone de Radio-Canada, où on parlait de l’éclosion du VIH dans le sud rural de l’état d’Indiana. Ils sont aux prises avec un grand nombre de nouveau cas de VIH reliés à l’utilisation de drogues par injection et la solution de leurs autorités de santé publique étaient de faire venir les gens du Centre d’Excellence sur le VIH/sida de la Colombie-Britannique pour les conseiller sur comment partir un programme de traitement comme prévention afin de réduire les taux de transmission.

Pour mieux comprendre une réaction négative de ma part face à cette nouvelle, il faut savoir que ce même état a interdit l’échange de seringues et que repenser cette mauvaise décision de manière globale et durable ne figurait pas dans leur réponse à leur crise de VIH. Il ne figurait pas dans le reportage du CBC non plus! Indiana a remis temporairement quelques services d’échange de seringues, mais ils ont mis tous leurs œufs dans le panier des traitements comme prévention.

Blâmons pas les gens de la Colombie-Britannique — leur stratégie a toujours été assez compréhensive et mes objections à l’approche de traiter précocement ont évaporés devant la preuve des bénéfices d’un traitement plus tôt pour la personne traitée. Non, le cible de ma colère doit être les responsables d’Indiana et leurs maîtres politiques qui ont découvert le traitement comme prévention et ne voient rien d’autre.

Bref, ces nouvelles approches ne sont pas tout ce qu’il y a. Elles sont, par contre, des magnifiques ajouts à ce qui fonctionnait déjà.

28 December 2015

The Courage to Become Yourself

It has been so very long since I did a short film review that I thought now might be the time. I’m highly focused on the whole cinematic experience (ambiance, pre-show trivia, etc.) beyond just the film or the performances, but I do this only to try to be entertaining. Maybe a little political, too, and most certainly shallow about some other aspects.

Step aside Caitlyn. The character in this film, Lili Elbe, is presented as a true pioneer in the trans experience. What starts as a single evening lark for a portrait artist and her husband, a landscape artist, in 1920s Denmark ends up exposing something deeper that has been going on for a lot longer than Gerda realizes. Her husband is gradually lost in the transformation into Lili, who was always inside him, and the exploration for medical assistance leads through all sorts of scary psychological elements to someone on the cutting edge (if you’ll pardon the pun) of new surgical interventions to help Lili to feel like she identifies with her body and the disguise of the accident of her birth in male form is shed.


Eddie Redmayne does an excellent portrayal of Einar and Lili. Swedish actress Alicia Vikander as Einar’s wife Gerda probably has the most emotionally challenging part to play, the spouse who is left behind by the transformation, even as she remains as lovingly present aa she is allowed to be.


A couple of smaller roles took my breath away as well, for much shallower reasons. Ben Whishaw seems to be in everything I am watching — including my dreams! — like the TV series London Spy, the latest Bond film Spectre and two more films on my list to see, Suffragette and In the Heart of the Sea. If he runs out of film and television projects, that space is still open in my dreams. In this film, he plays Henrik, a homosexual (say that with your best accent, emphasizing the “s” and the “x”) who sees Lili on her first night out (the lark) and is interested in the man beneath the dress. Let’s put him over in the “friend” column.


Equally dreamy is Matthias Schoenaerts as Hans. I saw him a couple of years ago (oh dear, almost three!) in De rouille et d’os and gushed about his brutish beauty in that film here. In The Danish Girl, he is Einar/Lili’s childhood friend and crush, author of a kiss that was not so much forgotten as filed away for future reference. He is refined and unflappable and seems most ready to step up for Gerda, should she show any inclination toward that, while remaining caring and supportive of Lili. Good thing I have plenty of dream space available. We’ll chalk him up as “next”.


I thought overall it was a sensitive exploration of the topic with the limitations of the time period. Like most movies, we are seeing people who don’t have a lot of cares about finances, which kind of sets them apart from the rest of us. Social challenges are so much easier to confront when you are not also trying to scratch out a meagre existence, but can dash off a few new paintings to sell to support your lifestyle and your travel, not to mention your surgery. Gerda could have had more space for her part of the story, but it was fascinating to watch Lili, sometimes as Einar and sometimes as herself, learning to move like the women around her and trying (unsuccessfully) not to be too obvious about it.

The cinema experience was interesting, too. When I got there for an early afternoon screening on a Sunday during this holiday period, the place was teeming with high-energy children. It was a good thing I had chosen to see a film that came with a warning screen on the ticket-buying machine (“Are you sure you want to see this movie…it’s not for children!”), as not one of those children was present in the room where my choice was projected.

There were also no danishes, so I’m glad I found the film itself satisfying.

22 December 2015

18th AIDSiversary


Now my diagnosis is old enough to order a drink in a bar.

It’s a funny thing, remembering that moment that really changed my perception of a lot of things in my life. It was the beginning of the “cautionary tale” that I tell when sharing my life experience with others — don’t wait as long as I did to get tested, it will make your life more difficult.

But there are other elements that stick with me, most of which I have written about before:

  • The horrible sensation of suffocating with pneumonia, especially venturing into the cold.
  • My doctor sending me to the emergency with a note that I read on the way (kind of took the edge off the news).
  • My friend Doug coming to get me and going back into the cold to get my prescription filled.
  • The bronchoscopy and the night in a hospital bed with oxygen recovering the strength to go home.
  • My friend Maychai taking me home that second time, leaving me with a lovely dinner of holiday leftovers.
  • The short call with my parents (I still couldn’t breathe well) with an easy disclosure because of how positively they had reacted to my coming out many years earlier.
  • The daily phone calls I got through the holidays from the immune deficiency doctor checking on my pneumonia recovery.
  • The easy consent to the HIV test when I already knew what the result would be.
  • The secondary shock of the first CD4+ count (it was 4).
Those little snapshots of a crazy time that changed my life. I think about them anew each year at this time. How about some updates?
  • Not being able to breathe remains one of the things that scares me the most, so I’m very proactive about protecting myself from respiratory illnesses (vaccines, baby!).
  • My doctor has now retired and I am seeing another doctor. I’m left, however, with a lasting appreciation of my doctor’s respecting my stupid decisions along the way to not be tested for HIV, even as he gently pushed me to. That respect gave me the confidence that is so very necessary in a doctor-patient relationship.
  • We lost Doug in 2014 and I miss him every day. I do go through cycles of seeing different friends more or less often over time, but I will always appreciate the easy comfort I feel with them, and the sense that I can count on help when I need it. A solid circle of friends is so precious.
  • I remember the nurse who found me a bed in the hospital the night after my bronchoscopy when I was too weak and oxygen-deprived to go home and take care of myself. He was doing his job, but doing it well and with compassion, and I will always appreciate that.
  • More friends. Maychai was my colleague and continues to be my friend. I don’t see her enough, but I always have a lovely time when I do.
  • The unreservedly positive reaction I got from my parents to my coming out as gay was so important to me. After years of anguish and fear of rejection, I got their loving support and I knew 16 years later that my HIV diagnosis was not something I had to hide from them either. I don’t have Mum anymore, but I have Dad and I enjoy talking to him every week and visiting him, though less often than I should.
  • So many of our encounters with the medical system can seem devoid of actual human feeling — they are understaffed and overwhelmed — that it is always a refreshing surprise to be on the receiving end of someone going out of his or her way to check up on you. That almost everyone has a story about that one health care provider (or more) who went the extra distance and provided a touch of humanity in a time of distress is so much truer an indication of the humanity that is there every day.
  • When you’re ready for something, it’s always easier. I spent quite a number of years resisting taking an HIV test because I feared it would be positive and didn’t know if I could handle it, even with the solid support network I had and continue to have. You can really do anything with support and a crisis like the one I lived 18 years ago really underlines that for me.
  • I still have a low CD4+ count. It isn’t 4, but more like 260, still lower than it ought to be and low enough for me to be able to cling to a bit of my personal pessimism. But beyond the odd cold that lasts longer than it should and a couple of bouts of gastro-intestinal problems after travel to exotic places I have been pretty healthy this whole time and never had to stop working.
I know that some in my community will balk at my use of “AIDS” as opposed to HIV, but I have that badge (had my AIDS-defining illness), so choke on it, kids! I use it for the shock value, for the recognition it gets among the less-informed. I also use it knowing that its meaning has changed: AIDS used to be a prognosis, and not a good one; now it is a diagnosis and while that is also not good, it is entirely possible to leave it behind and find your health.

And just to do that thing that drives me crazy when uttered without explanation: getting HIV has had some positive impacts in my life, if you’ll pardon the pun, but impacts that you can also get without the HIV, but with a little introspection and reconsideration of values.

Happy AIDSiversary to me!

21 November 2015

Space and Time (and Fate)


Lest Carly Simon write a song about me, let me first say that I already know that this whole thing is NOT about me. Very aware of that.

As it happens, I was in Paris a week before the recent attacks and ate at a restaurant with friends just down the street from one of the attacks. In fact, we finished dinner and walked right past the café Cosa Nostra at about the same time as the attack took place, but we were there a week earlier.

Just something to mull over in my head.





28 October 2015

Schadenfrustration



There is something deeply dissatisfying about the results of our federal election last week. Oh, it isn’t that after more than two months of plugging away at my 78 Tory Wrongs series I suddenly fell silent. It also isn’t that the party I wanted to win didn’t, and actually lost ground.

No, the thing that frustrated me the most is the manner in which our almost-former Prime Minister vacated the stage. He stood up on election night and delivered his final address to his supporters in the room in Calgary and to the country via the live TV coverage, but he didn’t say that thing many of us were waiting to hear. He didn’t announce his resignation, but instead sent that in a letter to a Conservative Party official. A whimper if there ever was one.

At least (grasping for straws) the Conservatives just missed out on triple digit representation, with just 99 MPs elected.

Now I’m not so petty as to have only that reaction to the election results. I still have a healthy skepticism about the progressiveness of the Liberal Party, which has a lot of historical baggage to overcome, including a fair amount of running as progressives and governing from the right, but I am willing to give them a chance to follow through in their promises, or at least the ones I feel okay about. After all, anyone would look left wing next to Darth Vader and a pack of parroting storm troopers, right?

I will admit that I am rather disappointed in the outcome in Québec, with more Tories and more Bloc MPs elected, largely on a wave of intolerance on the issue of the niqab. Not since Bernard Landry made his famous remark about the federal branding on everything to which it had contributed — « les petits bouts de chiffon rouge » — has a small piece of cloth that is relatively rare to find covering an actual face had such political repercussions. It was probably a smaller vote shift than it might have been a couple of weeks earlier, but that plus the fact that so many of the races were three- or four-way contests led to the defeat of a number of those Orange Wave NDP MPs from 2011.

So what about the NDP? Yes, going from 103 seats in 2011 to 44 in 2015 is quite a blow. I would point out a couple of things about that 44 number (neither of them having anything to do with Chinese superstitions about the number 4). First, that’s ten more seats than the Liberals had after the 2011 election. Second, that’s the second best result ever for the NDP. Little consolation, I know, but let me add the fact that the NDP candidates in Québec won in 16 ridings and came second in 32 ridings, third in 29 ridings and fourth only in one, while the first, second, third and fourth numbers for the Conservatives were 12, 5, 11 and 50 and for the Bloc were 10, 11, 30 and 25. The Bloc also came fifth in two ridings. Not bad for a party that had only one MP from Québec before 2011.

And here comes that schadenfreude again — the Conservative candidate in my riding barely squeaked into fourth place with a whopping 4.1% of the vote.



18 October 2015

#78 Welcome Back, Felon


How did this guy get back into the country? Was it some kind of secret approval by our law and order government?

You might remember the little spat between Conrad Black and Jean Chretien. Mr. Black wanted very much to take a title in Britain, something that Canadian law has not permitted for quite some time (since 1919). To become Lord Black of Crossharbour, he renounced his Canadian citizenship, moved to England and took up his title and a seat in the House of Lords.

In the meantime, things were happening in his business life that would bite him right in the…US. He was charged with a number of counts of fraud and with obstruction of justice. These charges and the sentences related to them were reduced on appeal and he eventually served 37 months in prison in the US for one count of fraud and one of obstruction of justice. Upon his release, he was deported from the US and cannot return there for 30 years.

He returned to Toronto, where he had lived before, and I am wondering just how that might have happened. We have a federal government that gleefully deports people who are not citizens who are found guilty of criminal offences, even when those people have lived in Canada for most of their lives and have little connection to the country of their citizenship. They now do the same for anyone who has refugee status and who commits a crime while in Canada. Believe me, they would have difficulty re-entering the country.

Not so Lord Black of Crossharbour? He has been stripped of his membership in the Order of Canada and the Privy Council because of his criminal conviction, has renounced his Canadian citizenship, but seems to be living long term in Toronto.

Tough on crime indeed.

Let’s be clear that I don’t think Conrad Black is a danger to Canadian society (well…not that way, anyway…and his experiences seem to have helped him develop some very pertinent insight into the justice system that more people should listen to). I do, however, think there is a glaringly obvious double standard when someone who has renounced his citizenship and served time for a felony abroad seems to be able to come back without question while we are spouting zero tolerance and deporting permanent residents for smaller crimes.

Let’s also note that the non-citizen in question seems to have endorsed the leader of the Liberal Party, telling his old Bay Street buddies that they have nothing to fear from Justin Trudeau. Not sure if I would be welcoming that vote of confidence if I considered myself a “progressive” party.

Further reading here and here


Very tough on crime
but the enemy of our
enemy is home