Choosing To Not Take Meds Will Kill You - Spencer Cox

[rawTOP]

There's a recent article in the NY Times that's rather fascinating... It's the story of Spencer Cox - one of the leaders of ACT UP back in the day.

http://www.nytimes.com/2013/02/24/fashion/what-really-killed-spencer-cox-aids-activist.html?_r=0

He died in December and his death was a bit of a shock to his friends. After he died they found half-full bottles of HIV meds in his apartment - bottles that were 6 months old. And things weren't particularly bad for him - he was one of the stars of the Oscar nominated documentary "How To Survive A Plague" and he seemed completely normal and OK to his friends. But he stopped taking his meds and apparently didn't talk to anyone about his decision. And as a result his body just stopped working and he died rather suddenly.

It's a really sad story. One of his issues was that when the AIDS crisis ended so did much of his purpose in life. He had spent so much time and energy getting ARVs to market, etc. that when he achieved his goal and the crisis went away there wasn't much left for him. While others (like me) had been focusing on their careers, he found that his skillset wasn't really all that great and he wasn't all that employable.

Take some time and read the article. It'll make you think...

Oh, and he was pretty cute too...

[Guest JizzDumpWI]

rawTOP, thank you!

For openers, yes, pretty damned cute as well.

Sounds like a different form of PTSD... Similar to what vets experience, except the war was differently configured. I suspect we should be addressing that with HRC - some care for our warriers?

[wood]

I saw how to survive a plague and read up on spencer cox, and some of the other people featured in the film after.

Whats really interesting is that after some of these guys had been through hell, a few still made really self destructive choices. Peter Staley, another guy in the film apparently had a serious meth problem in the late 2000's before getting help, and drug and alcohol abuse which to many is common in the gay community seemed to have got the best of some of these guys even when they had been through so much.

[Guest bbosouno]

I read his story in various venues...and - just my opinion here - his death was simply a suicide. Its horrendous that the modern gay society forgets people like him and all those who fought during Stone Wall...and what's worse they dont care...for all those who posted " he's cute" ...imagine a passionate fighter - who because of him, we have all the new antii-viral meds and people stopped dying of AIDS daily...reduced to just being "cute" ...how absolutely insulting

[sfversboi]

But be aware that the Meds can kill you do. They affect your organs.

[Guest]

But be aware that the Meds can kill you do. They affect your organs.

Any meds "can kill you", but not taking them certainly will...The bottom line is that todays HIV meds are pretty safe and most people have no little or no side effects...As for long term side effects, no one can be quite sure, but some have been on the market for a long time. The same can be said about statins, anti inflammatories etc

[dickluva]

Sad to hear. Spencer Cox is missed. I have thrived since I made decision to discontinue retrovirus therapy September 2007.

[bearbandit]

But be aware that the Meds can kill you do. They affect your organs.

I'm pretty much the reference model for side effects at my hospital. Yes, the meds can kill you. But so can a handful or two of paracetamol and a bottle of whisky. The difference is that the meds have a more than 50% chance of keeping you alive. I demonstrated this for myself when my last partner died. I didn't feel that I could keep adherence up so I stopped altogether and lost 70 t-cells per month, taking me almost to my nadir. If it wasn't for Spencer's work I wouldn't be here now.

I'm very much with JizzDumpWI: many of us who got through the eighties and nineties, and especially those of us who have HIV probably do have some form of PTSD. When life becomes a rush between caring for different friends - I even got sent home from work one day when my next door neightbour came down with PCP and needed stuff from home - and choosing whose funeral to go to is it any wonder? One of our self-help mechanisms was always to attend funerals dressed for the bars ("otherwise he wouldn't recognise us").

If I choose to give up and stop ARV medication that will be my choice. And I expect that choice to be respected. Dasher, are you aware that most drugs released in the 90s we knew next to nothing about and that they were therefore prescribed in massive overdose? The reason some have been on the market for a long time is that the correct dosage has been worked out: I now take 100mg per day of ritonavir instead of 800mg. I ended up with diabetes through that one.

HIV pharmacology, although it's developed like no other pharmacology before it, is still in its infancy. A drug previously thought to be one of the safest around (tenofovir) is proving to be dangerous with long term use. Eighteen months ago I was built: now I have osteopenia and a host of kidney problems, yet tenofovir is considered successful, because it's the best out of a bad lot

We're still at the beta phase of HIV drug testing and nowhere near enough is being done to identify people like Spencer Cox who end up simply no being able to take it any more. Don't get me wrong: I'd love to see this obscene virus wiped from the face of the earth, but I seriously doubt it's going to happen in my lifetime. While it's around, I'm up for any clinical studies to eradicate it. The early drugs did a pretty good number on me, what's a little more?

[wood]

Sad to hear. Spencer Cox is missed. I have thrived since I made decision to discontinue retrovirus therapy September 2007.

yeah good luck with that...

Further, no offense, bu unless you are a long term non-progressor without treatment, you could easily die form the flue, or simple staph infection.

I recall one guy who stopped taking meds, saying "oh I feel better now" when he stopped because he had some med side effects. He later stated that "even his allergies went away later. And he is probably correct about that, because allergies are an immune response, with no immune system he didnt get allergies. Of course he later died but hey what does that matter...

[dickluva]

Sounds like y'all are saying people who take meds will never die, or at least live longer. Show me the study that proves that please. Bulletin = people who take meds & people who don't will all die. HIV+ or HIV- will die too. My point is I will not die supporting a system of corruption, that fails to support me. My quality of life has improved without meds. If you had read my other comments you would know I am a long term non-progressor, tested poz 1986, who knows how long I was infected before that. I have been sexually active since 1975. I was a rent boy in Hollywood at Highland & Santa Monica as a teen. (I made the rent on beach house in Venice Beach, & had a lot of fun, never had a client in those days use a rubber.90% of those men I knew are probably dead, from old age & more than a few medical mistakes.) Some people who choose to take Rx will die sooner than those of us who don't. Prescription drugs are one of the highest causes of death in USA. I remain sad about Spencer Cox.

[Guest GoodExercise]

Whether you turn out to be a long-term non-progressor or to be a short-term fast-progressor, the decision to take Rx is a choice that need not be overlaid with the moral judgments of others.

[rawTOP]

Sounds like y'all are saying people who take meds will never die, or at least live longer. Show me the study that proves that please.

http://www.sciencedaily.com/releases/2013/04/130409173502.htm

http://www.natap.org/2013/IAS/IAS_43.htm

Quoting that last source…

…a 20-year-old man starting treatment in 2006-2007 could expect to live to 89.3.

…a life expectancy approaching that in the general population.

It's simple - start meds before you drop below 350 t-cells and you'll probably live a long life. Or stay off meds and die within 10 years (probably). Pretty simple to figure out why most guys go on meds.

[GermanFucker]

If you had read my other comments you would know I am a long term non-progressor, tested poz 1986, who knows how long I was infected before that. Some people who choose to take Rx will die sooner than those of us who don't.

That is probably true for 1% of all poz guys, namely the aforementioned long-term-nonprogressors. So you can count yourself lucky that you belong to this select group. However, your truth doesn't apply to the other 99%. These 99% live longer and healthier lives thanks to ARVs.

I read his story in various venues...and - just my opinion here - his death was simply a suicide. Its horrendous that the modern gay society forgets people like him and all those who fought during Stone Wall...and what's worse they dont care...for all those who posted " he's cute" ...imagine a passionate fighter - who because of him, we have all the new antii-viral meds and people stopped dying of AIDS daily...reduced to just being "cute" ...how absolutely insulting

But he was cute nonetheless. Like the kid with the killer smile who so many of us choose to ignore, because he doesn't wear the right clothes, because he doesn't fit in, doesn't belong, or worst of all, isn't doing the right drugs.

IMHO opinion it's not insulting to call a clearly handsome man cute, especially as such a statement is tinged with the melancholia and sadness of loss and what-could-have-beens. If you are looking to find insult, I would like to paraphrase one of the guys from the documentary METH

IIRC he basically said that it's an absurd waste to survive AIDS and then stick needles in your arms to shoot up meth. Not caring about others and letting meth rule one's life, that is the real insult.

[pigpozdad]

He needed to stay alive for everyone, until he was sure that the plague subsided to some degree. He wanted to make it past some goal or date and live to show everyone what's possible with meds and without, RIP