“You won't have to wait for the judgment day,
Judgment will happen every day.
And fear is what will frame you,
Not your DNA.”
The Paper Chase, “We Have Ways to Make You Talk”
OK so you've just been diagnosed Poz and you've got a million questions but the one that looms up first for a lot of people is, “Am I going to die?”
And the answer is yes, darn right you are. We all will, but probably not as a result of HIV, not these days at least. Not as long as we're successfully in treatment. And if you and I persist in not dying for long enough, that will make us long term survivors.
Barring accidents or violence, most of us will probably get there. These days the HIV news on the medical front is mostly good, or at least encouraging and it was no lie when they told us our HIV wouldn't be a death sentence.
It's a life sentence.
From time of diagnosis on, we invariably must deal with discrimination, stigma, sundry curbs on our freedoms and meds that are great when they work out but which may or may not mess us up in new and different ways. This in addition to various other medical conditions brought on as old age overtakes us. In Canada people spend more time in and more money on medical care during the last 5 years of their lives than during all the rest.
The list of what we deal with goes on and on and you can add ageism and potential elder abuse to it as you stand on the threshold of these, your golden years, trying to find your way forward through, once again, a million questions.
I know I've got a few.
What are things going to look like for us a few years down the road?
The global HIV population is aging. Soon over half will be over 55 yet there are few services geared to their needs. We need to think of how to eventually integrate them into long term care and nursing facilities and how to merge HIV care with geriatric care. Here in Canada those are currently different health specialties.
Elder abuse will remain a threat and we will still need to look out for each other as we age. In a population like ours, where approximately 52% show some signs of neurocognitive disorder, abuse via the Mental Health Act as we age is a potential concern for long term survivors of HIV and I don't hear anyone talking about it.
Committal under the Mental Health Act is not like other forms of incarceration in that once a person is found to incompetent most of the rights and freedoms they have hitherto enjoyed disappear and it can be difficult if not impossible for the person to ever climb out again.
If this seems like an unfounded concern, please consider all the crap the elderly go through when greedy Powers of Attorney decide to take advantage of their charges for monetary reasons or simply because it seems more convenient to them. If it can be used to abuse, it will be. Why? Because there are people involved. We will need to be vigilant. Are we being vigilant?
We need more research on the effects of HIV infection and treatment over the very long term. Right now we just don’t know because the epidemic is only 39 years old.
We need to recognize that seniors have different sexual health needs and require prevention approaches that are not the same as, for instance, those of young gay men. The community has not yet really explored what those look like yet over 55’s are being infected in significant numbers.
People living with HIV are ideally placed to play an active role in all aspects of research and program development and in fact these initiatives will not succeed without our participation. For this reason and in the spirit of GIPA/MIPA we need to be more included in these.
There is also an important mentorship role for elderly people living with HIV and we need to explore ways of making that most effective. Our elders hold our history as well as their own experience. They have much to pass on to the next generation.
And that brings up something else that I don't hear discussed much: what will these future HIV positive generations look like? Demographically, I mean. What will their world be like after the generations hardest hit by HIV have gone? New HIV infections will eventually decrease and there is a taste for the “HIV Endgame” in the media now as well as in political circles.
They want to know now because they think that PrEP is going to end the epidemic. They're wrong about that in my opinion, but that's what they want to know about. And so many people, and I mean people who care enough to keep themselves pretty well informed, seem to conflate ending the epidemic with ending HIV.
Not the case. People are living long and fruitfully with HIV and they're fruitfully multiplying.
PrEP can't end the epidemic anyway, not by itself. For that we need the drugs, sure, but we also need the knowledge, the social understanding and skill to reach people who might be very different from ourselves in any of who knows how many ways and get treatment to them. Oh, and we need the genuine will to push it forward. Q. E. D., I think.
And still, absent something like a vaccine, there will be people living with HIV. For the foreseeable future, Poz is here to stay.
So I wonder what they will look like, those future Poz generations? How will they be integrated with the rest of society and what will Poz rights look like? Though we'll probably have made progress with criminalization, stigma and bigotry will most likely look about the same as they ever do. The societal currents that basically hung the early HIV generations out to dry until it was realized that straights could contract the virus too are ongoing. They could do the same or worse tomorrow given the opportunity; all it would take is a shift in the political wind.
I think that when we talk about the HIV community what we really speak of is the HIV movement. Outside of that, what we have is just people living with HIV, so diverse as to be an un-community and people generally need to have more than a microbe in common before they'll form much of a bond. The HIV movement coalesced as a response to wholesale abuse, drawing people together and changing the face of activism in the process.
They turned to one another because for so long, who else was there? But those people in the early days of the epidemic had one another to turn to and so do we. Will smaller numbers result in a correspondingly smaller voice for our descendants? A reduced ability to defend their lives if Poz people are ever again attacked as a class?
It may seem far off and fanciful but I think it bears thinking about because what our children inherit in terms of a social fabric to live in and work with will be whatever we have achieved.
Then again, I'm just an old fellow, a gentleman of leisure wandering the road of life. And you know what us old fellows are like. We wonder as we ponder and we maunder as we wander over yonder.
But really, I don't hear anyone discussing this stuff very much and I wish I did. What's your take?