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 23rd 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)
