Last Men Standing: the luck to survive AIDS, and the misfortune to live on | Hacker News Reader

Last Men Standing: the luck to survive AIDS, and the misfortune to live on

projects.sfchronicle.com

121 pointsnkurz21 comments

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

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.

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.

Since I am under 30 y/o I never really understood what AIDS meant to the generation that dealt with it head on. To me it was background noise of red ribbons, charity walks, and celebrity tributes on television. When I went to college one of my mentors (an immunology researcher) gave me a copy of And the Band Played On (http://fave.co/1LMbq5A) and it opened my eyes to the real physical, emotional, and political history of AIDS in the United States. I recently saw the movie adaptation and it was decent but the book is just incredible. It's one of those history books that reads like a thrilling work of fiction.

I have a cousin who has been HIV positive for at least 25 years. He's not sure exactly when he contracted the disease but he has a good idea of the time-frame based upon the activities in which he was engaging at the time.

When he was diagnosed, he and virtually everyone else assumed it to be a death sentence. He may well die early because of it but he's in middle-age and still going strong.

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?

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

Guarantee you this is a management idea, not a developer.

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)?

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?

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.

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.

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.

Not entirely the same, as self-inflicted, but: https://en.wikipedia.org/wiki/The_Lotus_Eater

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.

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.

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

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

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"?

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...

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.

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