22 December 2019
I think the number 22 is supposed to have some kind of numerology or tarot significance, but since I’m an all-around unbeliever, I’ll just marvel at the coincidence that will not happen again — 22 years since my AIDS diagnosis on December 22, 1997.
I am well into the bonus round now.
This day always has some significance for me. A real turning point that I didn’t think I would get past.
Yes, as my doctor sent me to the emergency with my AIDS-defining pneumonia, I was also being assured that I would live, not die, so I had some kind of advantage over those who went before me. I had the advantage of being diagnosed when there was effective treatment available, so I wasn’t told to get my affairs in order and prepare for the end.
Still, my story is a cautionary tale (don’t wait to get diagnosed — you will damage your system beyond full recovery), and I allow myself to cling to a certain degree of pessimism on a personal level, usually privately, even as I applaud the optimism of our time with respect to HIV. My CD4+ count hovers around 300 (up from my original 4), usually below, and the more stable CD4% is in the low 20s after this many years of effective treatment and undetectable viral load.
AIDS doesn’t mean what it used to. You might be familiar with the graph of progression from infection to death, but that just doesn’t apply in the time of treatment, at least for those of us in the wealthy north. What used to be a one-way ticket is more reversible, and many will recover their health to “normal” levels of immune function, even if they have to keep up their treatment to maintain that.
Personally, I refuse to reject that “badge” I sweated and gasped for air to get. I will not dissociate myself from the term “AIDS” as so many people I know who are living with HIV seem anxious to do. I do make a point of educating people about AIDS not being a prognosis in our current time, but it remains a diagnosis of import, underlining the failures of a system to diagnose and treat people soon enough to avoid it.
From my particular privileged vantage point as someone who can be open about his HIV without risk to employment or the support of family and friends, I can also decry the growing trend of avoiding even the mention of HIV. Organizations changing their names to remove references to HIV or to AIDS think that they are working to destigmatize access to their services. Maybe. But they are doing so in a way that affirms the stigma of HIV and of AIDS. Every change in this vein saddens me and feels like a blow against us in the fight to overcome that stigma.
If we can learn anything from the struggle for LGBTQ+ rights, it ought to be that closets are for clothes, and that people who are out and open and refuse to be ashamed are on the path to liberation and preparing the way for others who might not have the liberty to be so open at this particular time.
If we want to get to liberation, someone has to make the path, and others must decide to follow that path.
Last results from September/October:
VL: “not detected” (test sensitive to 20 copies/ml)
20 May 2019
I have to say that I am very excited to see Alexandria Ocasio-Cortez (AOC) take notice, and better yet take action, on the issues of HIV, prevention and drug pricing in the US. I have a lot of respect for her fearlessness, her tenacity, and most of all her ability and willingness to speak truth to power and privilege. What a great addition to the US political scene.
I love that she really went after the CEO of Gilead Sciences about the price of their product Truvada, used in HIV treatment, but also in HIV prevention as pre-exposure prophylaxis, or PrEP. Apparently, Truvada, at least as PrEP, is subject to some patents owned by the Centers for Disease Control, which is declining to enforce them or to collect royalties on them. Gilead disagrees with the validity of those patents. I’ll leave that one to the intellectual property lawyers and to the politicians who ought to be demanding answers about the abandonment of public investment to private profits, as AOC and some of her colleagues are doing.
When I see a screaming headline that “People are dying for no reason” because of the price of Truvada as PrEP, I have to take a step back to reconsider what all of that means to me, a gay man living with HIV and diagnosed late (advanced HIV infection) in 1997-1998 (I was fortunate enough to cover the end of year holiday period with my little drama). Here I am in the 22nd year after my diagnosis, very much alive. I know that journalists, and least of all headline writers, can misconstrue and oversimplify, but careful messages get understood.
The PrEP Story
It took a long time to prove and with a few controversial trials, but the combination of tenofovir disoproxil fumarate and emtricitabine (TDF/FTC) has proven itself to be an effective tool to prevent HIV infection for people exposed to risk. All people, not just gay men, with some caveats for the length of time it takes one of those molecules to reach protective levels in vaginal tissues…but it does get there. It’s interesting to call it by its scientific generic name because in much of the world generic versions that cost a lot less than the name-brand. In the few hold-outs, including the US, the name brand is still covered by patents that prevent generic competition, keeping the price up.
In Québec, where I live, the nature of the distribution of prescription medications has meant that people have not been paying the full sticker price for the name brand product for quite some time, and now there are no fewer than three generic substitutes that have satisfied our regulatory tests of equivalence. No special payment program, and because the name brand was already in use for HIV treatment (in combination with other drugs), it was available for PrEP even before we had guidelines for doctors to follow.
The Patent Game
The same company has a new version of this drug combination that it is testing and applying to have approved for use as PrEP (and which is already approved for use in HIV treatment, so there we go again). The big claim for the new version is that it minimizes the side effects of the original, which could cause problems with kidney function and bone density for a certain number of those taking it. Notably, a number of studies have shown that those problems correct themselves over time after the person stops taking it, but the person also loses the protection from HIV. So, good for them for continuing to research and finding a version with fewer side effects.
Does everyone need the new version? No, just the people with the side effect problems. Does the company want you to think almost everyone has those side effect problems? Looks like it from their marketing efforts, but not so much if someone sues them over the side effects of the original. And just to underline a coincidence without wishing to allege any wrongdoing, the company is bringing out this new improved version just as their patents on the old one are expiring all over the place. Just sayin’.
HIV and Death
Here’s where I have a problem with what the Representative from New York has to say about the issue. She seems to be suggesting that not being able to access PrEP is a death sentence. What does that mean for people living with HIV?
After the introduction of protease inhibitors as part of effective treatment combinations in the mid-1990s — 1996 in Canada, just in time for me, I might note — the rates of mortality in rich countries with access to the treatments plummeted. The graph, picked form the internet, shows it pretty clearly. We die less than we used to, with our treatment supply uninterrupted, at least.
These days, in our wealthy countries, we speak of HIV as a manageable chronic illness, and focus on problems related to aging with HIV — that problem we couldn’t have conceived of in the 1980s when everyone around us was dying. We are more likely these days to die of classic things like heart disease, liver disease, various cancers, the complications of diabetes, things that may be aggravated by HIV or by the treatments we have taken to control it. We die less of the classic complications that would define AIDS in someone infected with HIV.
It’s true that in the US that access to treatment is often through special programs whose funding has to be fought for on a recurring basis, because the lack of comprehensive health care for the population (like in every other wealthy country) is too radical an idea to be adopted. The current administration’s cuts also threaten the global response, as PEPFAR and the Global Fund have helped make that radical graph curve above a reality for a number of other countries. Apparently generosity and compassion are in short supply these days.
Stigma and the Death Message
One of the biggest problems we have always had working to end HIV is the stigma that is attached to it. Whether it is because of the ways in which HIV is classically transmitted (sex, drug use) or the often irrational fear of “catching it”, stigma puts the brakes to a lot of efforts to encourage people to get tested, to sensitize the general population about HIV, to be as adherent to medication as we need to be to stay undetectable, to be able to take our place in society and enjoy all the same rights and, yes, obligations as everyone else.
It’s been a tightrope act to navigate between messages that encourage people to stay negative and messages seeking to reduce the fear of people living with HIV, and we haven’t always done it well. I’m not sure we’re really doing it as well as we ought to today. We know that fear doesn’t last as a motivation, and we know that instilling fear of HIV infection to encourage prevention efforts actually contributes more to fear of people living with HIV. Not helpful.
What we really need to do is communicate a more pertinent and accurate portrait of what it means to live with HIV today, in all of our very different circumstances, to reduce fear and increase empathy. There are plenty of good reasons not to want to get HIV that don’t involve making people afraid of us. We might be living longer, but we have challenges that I wouldn’t wish on anyone. As I often said after my diagnosis, I really never intended to become this high maintenance in my life. Well, here I am, and I’m apparently doing an okay job of it.
So getting back to our allies, please take the time to understand the whole context. Don’t stigmatize the million-plus people living with HIV in the US by waving around a death message in defense of access to PrEP. Do you know that PrEP is not even recommended if your HIV-positive partner is on effective treatment and undetectable (actually, under 200 copies/ml)? Talk to the AIDS organizations in your state, in your city. Talk to the passionate activists — including plenty of HIV-positive folks — who are your allies on a whole host of other issues, too.
Just know what you’re talking about and think about the consequences of how you say it.
05 May 2019
What a lovely note on which to end the 2018-2019 season of the Opéra de Montréal.
The usual disclaimer applies as always — not an expert, just have my own observations, sometimes comment out of left field…
Right from the beginning I knew I was going to like this production of Carmen. The overture so familiar that I was almost convinced that Bugs Bunny had done three operas, and not the two I can remember more clearly. Bizet, who died without knowing what a hit this work would become, is to be revered for a lively start, but the credit for the scene that greets our eye as the curtain goes up goes entirely to the Opéra de Montréal.
Carmen walking in silently, pulling and constrained by an enormous train of red fabric from which she eventually breaks free (but will see again). It doesn’t take long for the stage to become populated by a huge crowd, there almost all the time, which is lovely for its wealth of costumes, but even more so for the many chorus singing roles. Love that!
Carmen might be the headliner, but let’s take a moment to talk about Micaëla, who enters searching for Don José to deliver a letter from his mother, but also to show her love for him, and his mother’s wish that he marry the messenger! France Bellemare has a really strong and beautiful voice. If she had more parts to sing, she would surely have stolen the show. Just lovely.
Seductress Carmen, arrested for her part in a fight in the factory, uses her wiles to persuade Don José to let her escape. He suffers the consequences, but seeks her out after his release from prison and she persuades him then to commit a further transgression by deserting to join the gang of smugglers.
Act 3 opens with a lovely visual effect, a series of lanterns working their way onto the stage behind the scree. There were images on the scree (projections?), but the way I saw it, it seemed like some of those lanterns were coming through it into the foreground. I think I was fooled by the visual effects! In any case, we ended up in the smugglers’ camp, and two of the Gypsy women (yes, I know, Roma women, but Bizet lived in another time!) were reading their own cards, with ever more fanciful and profitable fortunes, right up to the death of a wealthy husband, leaving the card reader a wealthy widow (she seemed delighted by that). Count on Carmen to cast a pall over that party, with a self-reading of doom and gloom and death! No wonder her relationships don’t last long!
Fabulous toreador Escamillo makes a play for Carmen, but all he succeeds in doing is provoking Don José into a fight. Carmen has to intervene to break it up. Micaëla announces Don José’s mother’s severe illness and imminent death, he leaves with her, and that is too much for Carmen. End of that relationship…where is that toreador?
There’s a lovely crowd scene celebrating the arrival of the various teams of bullfighters, each with a role so specific that I was confronted by my ignorance of bullfighting and what everyone’s role might be. Escamillo is, of course, of the highest rank and the most lauded. Also the most adored by Carmen, apparently, who has moved on rather nicely from her last failed relationship.
If only Don José had moved on, too, we might have a happier ending. Instead, we get the spectre of controlling intimate relationship violence, as he tries to prevent Carmen from returning to the bullring and eventually stabs her. Cue the return of the red cloth, this time a giant banner hanging from above, attached to Carmen in her death like a river of blood and completing the metaphor. Don José proclaims his guilt and invites arrest. The curtain falls before we get to that.
So now that I have mistold the story (that you find elsewhere with greater clarity, I’m sure), let me share my uninformed opinions about the singing, the costumes and the sets!
This is really what I look for in an opera: catchy tunes, beautifully sung, opulent costumes (and SO MANY of them, what with the crowd on the stage!). I love that there are many duets and many songs for the chorus, as they sounded fabulous. The children (there were many of them, too) were excellent in their roles and excellent singers as well. I couldn’t see in the program who they might have been, but we suspected a school somewhere in Montreal.
Oh, and let me appreciate the nods to flamenco. The rhythms are not in Bizet’s work, but we do get a couple of guitars on stage, the sound of castanets from the orchestra, and some distinctly flamenco moves. I love flamenco and associate it with the Carmen story (though as an aside, I also associate with this lovely video of a protest in a Spanish bank — how more delightful can you get than deploying this powerful culture-specific art form to protest the ravages of modern finance?!)
The set was spare, the outdoor square doubling as an indoor space by the addition of furniture, some other elements descending from above to suggest a more industrial area (smuggling space). The multimedia aspect was a little light in this one, with a short thunderstorm and the projections and other use of light that I have already noted.
We left very satisfied, though, and would highly recommend seeing this on one of its upcoming dates (7. 9, 11 and 13 May 2019). Tickets here if there are any left!
31 March 2019
This gathering is now. I sent this message to be read by my younger sister on my behalf:
When I think of John, all of those things that you have heard so far — and will no doubt hear more of — come to mind. He was always someone who didn’t do things halfway and seemed to be able to teach himself how to do new things — and do them well — all the time.
What I will remember the most, though, is that other thing he did well: loving his family. You could see that in the way he played tirelessly with his grandchildren, down on the floor with the young ones, challenging the older ones to excel as he always did at sports almost too numerous to mention.
You could see it in the way he and Terry raised their own children, helping them when they needed it, encouraging them to be their best at whatever they wanted to do. How many trips for various sporting events? How many practices, how many family ski outings and curling bonspiels? They were endless and neither Terry nor John would have had it any other way.
You could see it in his interactions with all of us in-laws: brothers and sisters, son and daughter. He could always find common points of interest, he could tease, and he could compete, and always with a level of calm and thoughtfulness that made us all feel welcome, feel at home.
And the most important thing for me to see was John loving my sister Terry. They were together 47 years and built a life of love and stability for their family — for all of their family — that none of us will ever forget.
Thank you John.
The family's obituary for John can be read here.