Silver AIDSiversary

 

This is a special one, because I have decided to transform it into a fundraiser for the Fondation québécoise du sida. Before I get started on my annual reflection, let me share the links to that fundraiser. All donations most welcome and appreciated!

English : https://fqsida.org/en/news/silver-aidsiversary-of-ken-monteith/

French : https://fqsida.org/nouvelles/sidaversaire-dargent-de-ken-monteith/

Twenty-five years since my fateful encounter with Pneumocystis Carinii Pneumonia, my AIDS-defining illness, and the eventual diagnosis of HIV and the depletion of my immune system. That was obviously not where the story began, but it was the moment of consciousness that the story was well underway, if not nearing its end.

This year I am embracing the interpretation of when the story likely began, at about this time of year in 1981. I had met a man (met being the ultimate euphemism) recently arrived from New York, who managed to give me a couple of infections. I was pretty annoyed by that at the time, but if he also gave me HIV, I can’t blame him for that — neither of us could have been aware of this virus almost three years before its identification.

After having dealt with the gonorrhea and the condyloma (which I would have to deal with many times over the years), my throat started closing up. I reflected on this a couple of years ago in my 23^rd AIDSiversary post.

But let’s put this reflection in the context of a theory I have developed that I call Three Generations of HIV/AIDS.

The First Generation, from the beginning until 1996, was defined by the message that people got with their diagnosis: “You are going to die”. People did a lot of desperate things, and a lot of things that made it possible for them to live as fully as possible in the limited time that remained for them. A time of selling life insurance policies to have the means to live well for a short period.

Some people survived this and then had to face the consequences of having a life longer than they expected, with their survivors’ guilt and their depleted financial resources to show for it. This generation had a particular relationship with the virus, with health care and their health care providers, and with science generally. Remember that this desperate period gave us the activism that changed the ethics of research, and that impact has spilled over to research on all kinds of infections.

The Second Generation begins with the availability of the first really effective HIV treatments, the protease inhibitors, used with other antiretroviral medications to control the infection and put people back on the road to recovering their immune systems or preventing their depletion in the first place. Death rates plummeted, a truly hopeful era, but with some rather harsh side effects and difficult dosing schedules.

The message I got was like the messages others got at this time: “You are going to live, but it will not be easy”. My first treatment had one component that I took three times a day fasting (no food two hours before or one hour after) and two other components that I took twice a day. I almost got kidney stones on a few occasions from this treatment and I think it set me on the road to some elements of the body changes that I have experienced (I’ll take personal responsibility for the sloth and gluttony that really capitalized on those beginnings).

The Third Generation for me starts in 2008 with the Swiss Statement. The Swiss federal commission on HIV/AIDS reviewed a large number of studies and drew the conclusion that people with a controlled HIV viral load did not transmit HIV to their partners. This was the beginning of a long road to the eventual recognition by public health officials all over the world that “Undetectable = Untransmittable”. The message to newly diagnosed people in this generation is: “You will live a long life of quality and you will not transmit HIV to your partners”.

So much work has gone into producing new generations of treatments that are easier to take and have fewer side effects, from a number of one pill a day options to the newest developments that are nearly available here, the injectable long-lasting treatment that takes away even the daily pill.

All of these generations — and I realize I am making broad generalizations that don’t necessarily apply to particular individuals and their personal experiences of HIV — have particular relationships to the reality of the HIV infections, the treatment, their health care providers, and even to issues of life and their own mortality.

I define my own place in this as being on the cusp between the first two generations because, despite the fact that I had an effective treatment to start right away, I started at a point of depletion of my immune system that for me removed the expectation of that long life I was told by my doctor that I would have. It’s the personal pessimism to which I cling in the face of the professional optimism I have for others diagnosed with HIV today.

What this means in terms of my relationship to HIV, treatment, doctors and mortality is probably my own little potent mix. I can say that I didn’t expect to be here 25 years later, with 41 years of HIV infection, but I like to say that I am living in the bonus round. I have learned to be kind to myself, forgiving even, and I am not likely to make a lot of sacrifices to prolong my life. I once disturbed my now-retired first doctor by telling him that I would rather have a quick heart attack than a long life without chocolate.

In all of this, I bear in mind the philosophy shared with me by my late friend Doug McColeman when he brought me home from the emergency and ran back out to fill my antibiotic prescription to treat my pneumonia. I didn’t think I had the strength to face HIV and all the trouble it would take to stay healthy, but Doug told me I did have the strength, and that I would do those things for the pleasure I would have tomorrow.

Twenty-five years of tomorrows later, I know I have more pleasures to come.

My most recent results:
CD4 count: 252
CD4 %: 24
Viral load: "Not detected" (test sensitive to 20 copies/ml)

AIDSiversary: 24

Well that really sneaked up on me! I have been so (rightly?) focused on the latest pandemic raging around me — and it’s truly raging at this particular moment, with each day bringing record new infection counts — that I have not been quietly reflecting on my other pandemic experience.

Yes, COVID year two, but for me, HIV/AIDS year 24 on the personal level and year 40 on the broader North American level, if you exclude the historical reconstructions that show how this particular virus made its way from some isolated valley through new urbanization and global travel to reach the world. It all happens way faster now, but in the same kind of way. It shouldn’t be a surprise that there are isolated viruses in out-of-the-way places, and that our globe-trotting ways help those viruses travel the world with us.

It has been difficult to watch the lessons we have learned (should have learned?) from HIV be discarded in the current context. Yes, there is no comparison between how HIV and COVID are transmitted, the latter being excessively easy, but there I no excuse for not first thinking about how various measures will impact the most vulnerable or how poor choices of words can have lasting negative effects.

Ticketing homeless people for being too close to each other when they have depended on proximity to others for mutual help and survival is completely ridiculous. Not to mention that those tickets will never be paid, and only represent an additional barrier to re-entry into society. The one that makes my blood boil every time I hear it: “Social distancing”. When some public health authorities realized the error of the expression — we need physical distancing and social solidarity — it was too late, and the expression has become ubiquitous.

Those kinds of mistakes have lasting negative effects.

Early errors in naming what was happening stigmatized communities and further stigmatized any frank discussion about sex and drugs that we know now are necessary to actually doing effective prevention. Not listening to the communities who are the most affected makes us miss the pragmatic approaches that could save lives. The condom strategy in HIV came from a community unwilling to accept recommended (and unrealistic) abstinence, and it worked quite well. The community had to push and pull to get recognition of the fact that low viral loads in HIV make it impossible to transmit. Yeah, yeah, science will never say impossible, but let’s be realistic about our assessment of risk in a world that is full of them: we don’t insist on the freak car accident as proof that walking on the sidewalk is dangerous.

So I’ve now ranted myself off topic, but there you go.

Twenty-four years after my diagnosis — with AIDS-defining pneumonia and a CD4 count of 4 — I am alive, I’m working full time, and HIV is not my central health problem. It certainly has an impact on my other health decisions, like not hesitating with vaccinations and being extra cautiously isolated, but I’m now getting old and having those age-related problems I didn’t really believe I would have, that day in 1997 when I got the news.

One lasting feeling from that time and how I experienced that pneumonia: while I accept that I might die earlier than other members of my family (I say this as someone diagnosed too late to completely recover and too early in time to have all of today’s medical advances), I know that the worst thing is to choke on a lack of breath. That is not how I am willing to go, so I will continue to be vigilant and maybe even over-vigilant in my following COVID rules.

See you next year, twenty-five.

AIDSiversary: 23 and Me

 

It’s that day again, and I can’t believe how unprepared I have been to mark it.

On this day in 1997, I got my diagnosis of AIDS, and not having been tested for HIV before that, I went from zero to AIDS in the space of a few minutes. I think we all know, or can deduce from the timeline, that the AIDS diagnosis doesn’t mean much anymore. It’s an important snapshot of a state in time, but it is not the one-way trip it was in the decade and a half before I was diagnosed, which ought to be clear from my presence here and now, 23 years later.

My title is a bit of a cheeky reference to one of those services that charges people to help the company build a giant database of genetic material (they should be the ones paying!), and this because of my relationship with my HIV. It’s in me, it’s a part of me, and it’s a big part of who I have become. It’s was a turning point for taking stock of my solid support network and the advantages that gives me, but it was also a moment for me to make the decision to be kinder and more forgiving to myself.

In the HIV movement, we often hear people say — and this might be language dynamics at play — “I’m HIV”. Some get angry at this, based on their own assessment of the role HIV plays in their lives and their many other identities. I have many identities, too, but I do tend to think, especially at this time of year, that HIV is too central a part of my identity to be separated or set aside.

It’s a funny thing that I count my HIV story from 1997, when my diagnosis tells me — tells us all, really — that the story started much earlier. I’ve done some exploring on this blog about when that start might have been, but I have always been reticent to seem like I’m finger-pointing or putting energy into blaming a person or a situation, energy that would be better spent taking care of myself. I still have one or two stories to tell about my theories and past experiences, but those will have to wait a bit longer for me to be ready to tell them.

I have kind of settled on the story of the time in 1981, right about the same time of year, when I went to the emergency with a problem in my throat. The doctor on duty had seen me before and drew his own conclusions based on that experience, which made things more difficult for me at this particular time of year. The follow-up showed he was wrong, and the fallback position was that I probably had mononucleosis, which in retrospect all looks a lot like the symptoms of an acute HIV infection. We didn’t know about that then, and neither, notably, did the man from whom I likely acquired it.

If I whip out my calculator and push a few buttons, the recalculation comes out to almost 2/3 of my life with HIV, but still only 23 years that I have known.

Besides, “39 and Me” isn’t as cheeky.

AIDSiversary #22: Angel Number?

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)
CD4#: 306
CD4%: 24

When Your Allies Don’t Get It Exactly Right

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.