AIDSiversary 26: Pedestrian Pet Peeves

 

 

I have been very good, in the past, at publishing a little reflection on the state of my HIV on the anniversary date of my diagnosis. I am very late this year, probably for a few reasons.

I have a number of little irritants to talk about this year, but not a huge focus on my HIV experience, which is probably because of the great privilege with which I am living that experience. I have taken to talking about that in settings where I am speaking to groups, recognizing that my experience as a white middle-class educated man living with HIV in a society that seems to have been built for all of those things except the HIV is not the experience of others, even others in my own society and country.

Even the part where I’m gay on top of all the rest is a bit of a privilege when it comes to HIV, as my community has a long history with this disease and its impacts, and significant portions of the community are friendly places in which to be openly HIV positive.

But I do have complaints, and all those other attributes urge me to share them. You can’t spell KAREN without KEN.

My biggest challenge this year is probably the retirement of my doctor. Not the first time this has happened to me (it’s all about me, after all), but the first time there was someone to transfer me to in the same clinic. Not this time. The clinic did undertake the mammoth task of ensuring that all of my [now retired] doctor’s patients living with HIV or on PrEP would be followed elsewhere. My doctor even gave me 24 months of renewals on my prescriptions, but cancelled what I expected to be my last appointment with very short notice.

I had an appointment to see my new doctor for the first time in November, but as chance had it, it fell on a day on which I had a superceding commitment and I had to reschedule. The earliest date I could get was 3 January (a few short days from now), almost 11 months since I last saw my doctor, and about 6½ months since my last bloodwork. I have an accumulation of things to talk to my new doctor about, but most of them are not about HIV. I’m quite confident that my HIV continues to be well-controlled.

I will have to start inquiring about medications for psoriasis, which I have been more or less managing with something topical (when I apply it), but which is now making itself common in places I can no longer reach. The spin-off of that is also the psoriatic arthritis that makes a lot of my movements more painful than they should be, so point number two (or maybe number one) will be getting back to my full dose of anti-inflammmatories, if my embattled internal organs can take it. Nothing specific about my organs, just the burden of processing HIV meds and other meds for the last 26 years.

At a certain point, I might have to choose between pain every day and bigger problems with my liver or kidneys. At this moment, I’m not sure on which side I will come down.

The additional impact of the arthritis is related to my medication adherence, in that it makes certain kinds of packaging more challenging for me.

The dreaded blister pack! I’ve had tinier pills in this format as well, and what seems to happen to me is that I press and sometimes the pill pops out and flies across the room, rolling under furniture and generally hiding from my ability to detect it. I’m not supple enough these days to be able to hunt for a tiny pill, or even to easily pick one back up from the floor when it is in an obvious place.

So there we have it. HIV treatment 26 years old going fine. Psoriasis now rampant, psoriatic arthritis making each day more painful that it should be. Plus a couple of other things I probably don’t pay enough attention to.

But alive and working much later than I expected to live when I go my initial late diagnosis.

My most recent results (27 June):
CD4 count: 247
CD4 %: 27
Viral load: "Not detected" (test sensitive to 20 copies/ml)

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.