
Last Men Standing: the luck to survive AIDS, and the misfortune to live on - nkurz
http://projects.sfchronicle.com/2016/living-with-aids/story/
======
fungi
My old man is in his late 60s, has been HIV positive since < 1989, his partner
passed away however he is going strong, with a happy family, great house and
just started his own biz. Basically a really lucky guy living with a very
unfortunate disease. /anecdote

~~~
masklinn
Just reading _Borrowed Time_ (a few years back) left me with strong feelings
of a painful and dark epoch, I can't even imagine how harrowing it must have
been to live through it and come through to the other side. Godspeed and long
live to him.

~~~
wsh91
All of Paul Monette's writings are worth reading. As a young gay person, after
reading _Borrowed Time_ in particular, I am now painfully aware of how lucky I
am to have been born when I was. Meeting people who have lived with HIV for a
long time when I moved to SF just reinforced that.

It may feel like the country is going to hell and the world is fucked
sometimes (though I think the trends are actually more positive than people
think :) ), but at least in this one area the last twenty five years have
produced miracles. A death sentence has become a manageable chronic illness
and, with PrEP, you can even avoid seroconversion in the first place. Wow.

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Sir_Substance
I tried to view this on my phone, and it placed a massive JS blocker across
the whole page bitching at me to view it vertically. Who the hell writes these
scripts?

~~~
rpgmaker
Sometimes I wish there was some kind of institutional body that could bar
these people from getting a job ever again. _Sometimes_.

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guard-of-terra
I don't understand why people continue to live in increasingly unaffordable
city, with vanishing funds, and expect a miracle (which they might get, yeah,
coming from pockets of others). Why not move?

They might be attached to the place, but frankly - they arrived into the city
in their 20-s. Now there's a new wave of 20-s aged guys and gals who would
like to take their place and have money/jobs to back this up. Why previous
generation is considered to be entitled to living where they want and getting
subsidies on that, while next generation is supposed to cope (and pay those
subsidies also)?

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blisterpeanuts
A poignant and well written piece. The author didn't touch on medical advances
as a positive outcome of the effort to cure HIV. Since 1981, and in no small
part because of the AIDS research effort, we have a far better understanding
of retroviruses, cell surface structures, immunity, the evolutionary role of
viruses in forming our DNA, and many other areas.

It's small consolation to someone suffering from this disease, even someone
supposedly in remission from using the latest treatments, because there are
still so many complications as outlined in the article such as brain
infections and dementia, premature aging and fragility, and of course the PTSD
of watching your entire community die around you.

But nonetheless, their suffering has given rise to new cancer treatments and
other medicines that are saving thousands of lives. Over 500,000 people die of
cancer every year; a friend of mine just died yesterday after a 15 year battle
with breast cancer.

I look forward to the day when these viral infections and cancerous mutations
will be handled with a routine shot that restores full immunity and function.
Perhaps this day can be hastened if we invested more resources into research
-- $100 billion instead of $36 billion, for example. What more important work
can we do, than to save millions of current and future lives?

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rdl
I wonder how many other cases there are of people thinking they're virtually
certain to die soon, blowing all their long term resources for (rationally) a
the short time they have left, and then being "saved", only to then suffer the
consequences of the earlier decisions. (Is this a common topic in psychology?
Notable works of fiction?) -- sort of related to a pyrrhic victory, but
without the causal relationship.

~~~
ChuckMcM
I suspect there are many. It seems people are more likely to believe doomsday
scenarios than ones where everyone lives. Living past the good times was a
central theme of the movie "The Grand Budapest Hotel", and the song lyric,
"Life goes on, long after the thrill of living is gone." So for me clearly the
notion is part of the shared cultural experience.

My grandfather used to joke (somewhat morbidly) that everyone is afraid to die
until one day they wake up and they are afraid they _aren 't_ going to die. He
was always thinking about the consequences of things in the present as they
rippled forward in time.

Sadly, I'm not sure what we can learn from it. It is easy to say "live every
day as if it is your last, it may be." but "Save things to do later, later
might be a lot longer than you think?" doesn't work so well.

I found the stories of people living on disability most compelling. They are
trapped because if they did work, that work would disqualify them from their
income, and how they know they are not going to die any time soon. So they
can't step out of the life boat for fear that they will still be alive and now
with zero financial support. If ever there was a situation of the heart in
conflict with itself that is it.

~~~
rdl
Yeah -- the heartless-but-logically-correct thing is to be more ruthless in
enforcing disability tests, so if working is a possibility, you have to work.
But that's horrible, too.

Another argument for Basic Income.

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6stringmerc
I'm pretty familiar with the epidemic and (ineffective/poor/malicious)
response to HIV/AIDS from a systemic and government standpoint, and this
definitely has merit for discussion. One thing that I try to look for is how
the notion of health insurance plays into a chronic disease, and unfortunately
the article looked pretty light on it - a few mentions of private disability
insurance. One of the functional systemic changes brought by the ACA has
implications for lots of different survivor types:

The notion of a pre-existing condition used to be used as a way to carve-out
certain populations from cost-effective access to the US healthcare system -
HIV/AIDS is a headline case, but it also had implications for Cancer
survivors, which, if I'm not mistaken, is a growing cohort now and in the
forseeable future.

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VLM
Sometimes negative spaces are interesting. In multiple ways. I noticed and
then searched the article for the phrases "PTSD" and "survivor guilt" both of
which I'd expect in a story about survivors of a scary epidemic, but didn't
find them. Maybe just authors word choice. Maybe they hold legacy political
meaning I don't know. Could be there's background I don't know why PTSD or
survivors guilt uniquely wouldn't apply to this particular epidemic. But it
was interesting in its absence. I could imagine a very smart author doing that
word play intentionally to make someone think hard about his article.

~~~
sophcw
They did mention PTSD, I think they spelled it out fully.

~~~
trowawee
Yeah, and "survivor guilt" wasn't explicitly mentioned because it was one of
the over-arching themes of the whole piece.

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rpgmaker
_They also are suffering debilitating health problems, chronic illnesses
brought on by a lifetime of living with AIDS and the toxic effects of its
treatment._

Can anyone explain what they mean by "toxic effects of its treatment"?

~~~
trowawee
Antiretroviral treatment is hard on the body even now, and the earlier
versions were cruder and had more adverse side-effects.[1] It's similar to
chemo in that sense.

[1]: [https://aidsinfo.nih.gov/guidelines/html/1/adult-and-
adolesc...](https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-
arv-guidelines/31/adverse-effects-of-arv)

~~~
rpgmaker
I see, thanks for the resource. Tough disease. I somewhat assumed that if you
were getting treatment you could more or less forget about the disease but
that doesn't seem to be the case. After reading some serious articles that
have been published in the last three years it seems that a cure could found
in the next 15 to 25 years... optimistic of course but let's hope that's the
case.

