THE AGE OF AIDS
As I was writing the post from yesterday my mention in it of AZT got me thinking about all the drug treatments and regimens people did in the early days.
For the longest time AZT was it as far as drugs went for the overall treatment of HIV but there was also Bactrim and aerosol Pentamidine used as a prophylaxis against PCP. You’d see all these guys with what appeared to be asthma inhalers but you knew that’s not what they were — they were huffing Pentamadine.
I got prescribed Bactrim once. My doc though it would be a good idea as a form of preventative.
It put me in the hospital and almost killed me.
Anyway, by the late 80s there were other drugs in the pipeline and at some point or other I decided that if one could qualify for a clinical trial then one was sort of obligated to try to get into one since basically everyone was dying at that point and the clinical trials wouldn’t take people who were close to death and medical science kind of needed to know if these drugs worked or not.
So around 1989 or 1990 I joined the trials for the first major combination therapy study. It was low-dose AZT combined with DDC and DDI.
And can I tell you what a royal pain in the ass that trial was?
One drug had to be taken with juice ONLY and on an empty stomach. Also, it had to be taken at least an hour before you took the other two which needed to be taken with food. But not too much food.
And one of them — either the DDI or the DDC — came in these huge fucking wafers that were easily twice the size of a casino poker chip. They were incredibly chalky and had been infused with this disgusting wintergreen flavor that reminded me of Skoal snuff and made me want to puke whenever I smelled it.
These needed to be dissolved in a glass of water before you took them.
So to say that compliance with this drug regimen was spectacularly difficult would be an understatement to say the least. But I felt I needed to do it because if people like me didn’t then who the fuck was going to?
Later on, in the early 90’s, I did the very first Protease Inhibitor study when I participated in the Saquinavir trials.
About the same time that I was doing the combination trials in the late 80s some weird experimental treatments started appearing that lots of gay guys were trying desperately to get into, because they either couldn’t get into the regular clinical trials or they didn’t have insurance for AZT and they couldn’t afford the more than $10,000 a year it cost at the time for the standard dosing of AZT — $20,000+ for the mega doses.
My friend Jack, who lived around the corner from me in Greenwich Village, managed to get into the famous Compound Q study — which was an unauthorized, underground trial being run by Project Inform. The drug was synthesized from the root tuber of a Chinese cucumber and was deemed extremely toxic.
I don’t know how long Jack participated in it but after he had been on it a while he told me that he was completely cured. He didn’t have a single sign of the virus in his body and blood tests were apparently showing that he was no longer even a carrier of HIV.
Less than two years later Jack had something like 30 T Cells left with an HIV viral load measured in the millions. And if that weren’t bad enough, all of the bones in his body were rapidly disintegrating from the Compound Q leaving him nothing more than a talking meat bag.
Needless to say, Compound Q didn’t work for Jack. Or anyone else for that matter.
Here’s a partial list of the HIV anti-retroviral meds I’ve taken over the years — those that I can recall — along with what my insurance company currently pays for a months supply of each.
Epivir — $347.11
Videx — $364.04
Viread — $744.85
Saquinavir — $450.78
Ziagen — $466.44
Sustiva — $499.43
Crixivan — $570.96
Viramune — $442.45
Kaletra — $796.26
Norvir — $321.46
Zalcitabine — $400.77
Didanosine — $574.99
Retrovir {AZT} — $405.59
At present, for those who are interested, I take Didanosine, Kaletra, Viread and Epivir every day at a cost to my insurance company of about $28,000 a year — for just four drugs.
So for you kids out there who imagine there to be a nice clean silver bullet for HIV, and that its easily managed and “no big deal” — think again motherfuckers.
Because every morning when I cram those eight pills down my gullet I think back to the days that I had to take up to twenty four pills every single day — days that the meds I was taking made me sick as a fucking dog.
And yet even today, and while still, all these years later, being compelled to take a lot of highly toxic, exceedingly spendy drugs, I thank the baby Jeebus in Heaven for medical science, good insurance and the gift of my particular blood chemistry that’s kept me alive with this bug as an unwanted passenger in my life for more than 26 years now — a life now lived with HIV longer than without it.
March 13th, 2010 at 7:51 am
I can’t believe how very lucky we are to still be alive. Reading your harrowing stories of the Age of AIDS is like reading my own diary.
I tested positive when the very first tests were available. I was volunteering with the Stop AIDS Project in S.F. at the time. I thought that if I was advising guys to be tested, I’d better be tested myself so I’d understand what the process was like. Surprise, surprise. (Why I even thought for a moment that I’d ducked the bullet is beyond me.) Like you, I thought that a death sentence had been handed down when I got the results back. I remember sitting with my “partner” (now my husband) and both of us just completely breaking down. (We’re a sero-discordant couple. Romantic, eh?)
It really is a matter of luck — and privilege, no doubt — to have survived while friends were shriveling and dying all around me.
I remember setting goals: I’d like to be a live to see Christmas. I’d like to live to see the millennium click over. Each time I reached a goal, I was surprised. And I’m still surprised. Now it’s completely possible that I’ll die of something more akin to old age than AIDS.
And I still miss all my friends, some of whom missed the benefit of new treatments by months.
Thank you for your series.
March 13th, 2010 at 8:25 am
I am just a beginner at 17 years HIV+ compared to you but I also remember carrying the fucking pill boxes and I was just on the tail end of “mono-therapy”. Now, though I still gobble down a handfull of pills a day (I now seem to be on double secret “salvage therapy” or something…sounds ominous but WTF) it is just when I wake up and when I go to bed.
I am also thankful (and undetectable for many years) for medical breaktrhoughs and a strong constitution.
March 13th, 2010 at 8:41 am
I think you pretty much de-bunked the myth that HIV is “no big deal, just pop one pill and your good to go!” with this post. By posting the costs of having HIV maybe you just gave guys everywhere reason to pause too and think if their carelessness is really going to cost them, literally. This is definitely a reality check for me, great post Scott.
March 13th, 2010 at 9:08 am
WOW, scott,
with each of your new posts in this series,
i find myself shaking my head
in humble gratitude and still disbelief–
that somehow i was lucky enough
to miss the fucking bullet.
for years and years
i sensed about me,
way deep down,
a miasma of guilt
that i had been so lucky–
just pure, dumb ridiculous luck–
not to have been infected.
and that would lead to this:
when will karma strike
that will even everything out ?
thank you for your transparent
and unsparing posts.
March 13th, 2010 at 9:36 am
Scott, there are pill regiments that require only a single dose. Can you take any of those? Are you resistant to those drugs?
According to Tbekuku (sp) a fine AIDS researcher who just happens to run South Africa, you only need to eat beet root and garlic to keep HIV under control.
Isn’t science wonderful?
March 13th, 2010 at 9:49 am
Todd Atripla was developed for people who have a hard time adhering to a dosing regimen — such as drug addicts, people with mental problems and those living in Africa who may not know how to tell time. Although its effective, there are other more effective regimens.
Also, once a person has taken one drug for a while his virus may mutate as you know to become resistant to that drug or even that whole class of drugs and with the number of meds I’ve done over the years the single dose therapy is not efficacious.
March 13th, 2010 at 10:13 am
While I was working on the Expanded Access Trial for ddI (Videx) in San Francisco I ran across a Dr. who was giving his patients compound Q as well. He claimed the combination was the cure for AIDS. He planned to go to the press the following day to announce this finding. However, he did not report this data in our company’s case report forms, but only in his medical charts. I did not have enough time at his site to review all of his data but I reminded him that it was wrong not to report all concomitant medications on the CRF, even ones that were not filed with the FDA and I asked him not to mention the name of our company when he made his press release. He didn’t. What a quack.
I’m glad you didn’t experiment with that shit Scott and I am very glad that you are doing so well after all this time!
March 13th, 2010 at 11:27 am
An excellent series – thank you Scott.
I came out 15 years ago in Ireland. My first gay social event was the funeral of a 27 year, a friend of my first lover, who I met on his death-bed, covered in KS. In NYC there may have been a sense of communal sorrow within the gay community. That was not the case in Ireland. I am thankful for the noise that you and your peers made to change the perceptions of HIV around the world. There is more work to be done.
In London last year I buried a close friend (36 years of age). I had to lie to his mother by telling her that he had been taking his HIV medication…he hadn’t. A passive suicide because he could not cope with what he saw as a stigma of living with HIV. He simply refused the meds provided by the NHS (HAART meds are free in the UK).
I see that there is a distinction between avoiding contracting HIV, and forgiving yourself if/when you do. You do not want to play host to this clever virus, but if you do slip up (unlucky things happen); then understand that there is no stigma to being positive. You have an opportunity to live a long healthy life.
March 13th, 2010 at 11:40 am
Thanks to HIV frontrunners like you. If it wasn’t for people like you there wouldn’t be so many treatment options available to us. Our life is indebted to you. I am very grateful for people like you.
I am poz (6 years) but not under treatment. I keep a healthy life style to stay alive. I don’t drink, smoke, do drugs or eat unhealthy. However, I bareback. I know I got my death sentence and just waiting for my execution date. But I will try to hold on as long as I can. I really don’t want to start on any antivirals due to all the side effects you get from them. These drugs themselves can kill you eventually. This is the main reason why I chose to stay away from these drugs. Some of you may have a different opion about my decision but for now I think this is what’s best for me. When the day comes that I am really ill I will turn to the antivirals for help. I am not here to preach what I practise. It is not for everybody. I am just here to share my experience. Thanks for reading.
March 13th, 2010 at 12:21 pm
Anon K I don’t think anyone would think you were preaching. And your attitude is not all that unusual in the Poz community nor is it necessarily wrong. I know a whole slew of people who have refused anti-retroviral treatment and are doing fine. I’ve known a slew who tested poz and hit hard and hit fast with drugs and still got sick. It really is all about what you THINK you want to do thats what’s best for you.
I can tell you from experience that one can have a serious drop in T-Cells and an increase in viral load and recover from that. I did it in fact. I crashed on my meds and my T-Cells dropped from 600 to less than 20!!! with a viral load of five million. But since then and for the least ten years my T-Cells have been in the 400s with an undetectable viral load. The problem is that nobody knows what exactly the negative consequences of allowing your levels to drop so far are. And then there’s always the possibility that if you let them drop and then go on anti-retrovirals they simply won’t recover even with the meds.
You should definitely do some reading on the subject if you haven’t already but at the end of the day the decision about how you deal with HIV is yours and yours alone and you shouldn’t let outsiders try to tell you what to do and you definitely shouldn’t give a fuck about what anyone thinks of your decisions, because the only opinion that matters is yours my friend.
March 13th, 2010 at 1:01 pm
Scott,
Firstly, thank you for this series.
You’ve lived with HIV longer than I’ve been alive, and seen the brutal effects it can have.
Having gone through all this, what opinions do you have on people who choose to not care about safe sex practices and/or deliberately place emphasis on the erotic risk of barebacking and sero-discordant sex? Is it their freedom to be ‘irresponsible’? HIV is no longer seen as a “big thing” anymore, and yet still fucks people up. Young guys my age not caring about condom usage and advertising themselves as “bareback cumdumps” seems to be a trend, regardless of all the safer-sex messages and the weight of the last few decades backing them up.
Thanks,
J
March 13th, 2010 at 2:34 pm
OMG Scott I’d totally forgotten about those awful fucking wafers … and I chewed those nasty things for years!! They were terrible. I recently remembered the pre-AZT snake oil called AL 721 that everyone used to take. It had to be refrigerated and mixed with a hand blender and juice or something every morning and it tasted like shit. The theory was that it would block HIV from attaching to T-cells. There was also that drug from Japan that I can’t recall the name of and didn’t do anything – but we were so desperate and so afraid. Like you I have had HIV for more than half my life. I feel blessed with some amazing genetics or just plain luck because I am here and well and have outlived almost everyone else I knew back then. I really appreciate this walk down HIV memory lane you are taking us on – it is important as hell and these stories need to be told. Many thanks!
March 13th, 2010 at 4:31 pm
@Jay — Wow! AL721, I had totally forgotten about that. Its some kind of a lecithin compound isn’t it? I remember people doing it and I remember the hand blenders for it. What a fucking nightmare. And the desperate hope that everyone attached to the various cures and rumors of cures. . . it was enough to make a sane person nuts. And frequently did.
March 13th, 2010 at 9:58 pm
Scott, a few years ago in college, we were shown a film from HBO called “And the Band Played On…” Ever seen in?
March 13th, 2010 at 10:30 pm
Your post reminds me to be grateful as well for the advances science has made. This Oct will be 5 years for me.. I was diagnosed when I was 20. I just had to start meds and im already on my second cocktail.. ( i was allergic to the sustiva in Atripla), but with out them i would have probably had a few more trips to the hospital. I feel its so important that younger people know that its not a joke and not something to be worried about. More power to you man. Hugs!
March 14th, 2010 at 5:18 am
Bill
Thanks for posting your stories and experiences over the years. Not only is it important for these stories to be told about the pain and suffering that still affects our community but for the younger generation to know how this disease continues to ravage those affected. All the best.
March 14th, 2010 at 5:52 am
Brian, I have indeed. In fact, there’s a scene at one of the AIDS conferences during which a doctor takes exception to whats being discussed and proposed concerning treatment. That character was based upon my doctor, Dr. Joe Sonnabend who would routinely upset the status quo at AIDS conferences.
March 14th, 2010 at 6:26 am
I like these posts very much, thanks for writing them.
The 3rd to last paragraph kinda hits home.
March 14th, 2010 at 5:42 pm
Thank you and to all those who were willing to endure the unknown side effects of those drug trials in order to bring better meds into the pipeline. Although it has been 20 years for me this year (diagnosed at age 26) I did not take any meds until the protease inhibitors hit the market.
Your walk down memory lane also brought back many memories of friends that I lost and it is all too familiar. I agree that you lose part of your soul when you bury so many friends and loved ones in your twenties and thirties, instead of celebrating the normal milestones (new job/carreer, new home/condo/apartment or planning fantastic vacations/parties).
I admit it was weird turning 30 and realizing that I had several more years ahead and that I needed to consider a carreer!
Thanks for sharing this blog with the rest of us, keep up the fantastic work and good luck with your project, hope the architect you want signs on and gives you something out of this world.
March 14th, 2010 at 9:23 pm
Whenever I tell people I bareback most automatically condemn me as having irresponsible behavior. I did not become positive from barebacking. The fact is they don’t know. How do they know that I don’t have a lover or boyfriend? Some people even go further telling barebackers that we are spreading HIV. The fact is when we have sex we both are willing parties and we are not forcing the act into people like rape. I don’t know why people browse this website and start judging people why they should not bareback. Don’t you think they are hypocrites? I guess they show a bit of irresponsible behavior themselves because by being part of this website they support the things on this site. Haven’t you noticed that most of the porn on this site is bareback related? Therefore before you judge people who bareback please know that you are indirectly supporting the ideas of this website. And if you have a problem accepting the ideas here then this webstie is not for you. We already suffer so much discrimination in the straight world. Why create the same environment in the gay community?
March 15th, 2010 at 11:41 pm
Brilliant and important storytelling, Scott. I’ve been poz since ‘86 (that mysterious flu, I remember!) but got tested in ‘89 – got lucky with several clinical trials in LA, 20 yrs later have found a regimen that is tolerable. No OI’s to date, Tcells in the high 800’s, undetectable VL. I must have joined The Fuckin Lucky Club. I hope a magic bullet will someday come along, but guys: prevent, prevent, prevent – no telling how many more will seroconvert in the gay community for the pleasure of barebacking. And long-term use of some of these cocktails (combined with our “cocktails”) might have things lurking to bite us later in life . I accepted the” death sentence” that was the HIV test, agreed to move in with my new man, who’s been my rock and angel for 21 years…like Roxie Hart says…”I’m older than I EVER intended to be… ”
be good to each other, bro’s
Rock on, Scott!