Liam Scheff - Writer and Journalist on Politics, History, Race, Class and Culture.
In 2004, I broke open the NIH clinical trial scandal - government researchers testing New York City orphans with combinations of toxic, speculative drugs. My research was used as the basis for the 2004 BBC film "Guinea Pig Kids."
I've been published in city weeklies in New York, Los Angeles and Boston, in the book "Tutto In Ventita" (NewWorlds Media - Italy, 2005), and in other print and web journals.
Too much at once, like the rest of you.
Liam Scheff at GNN
JMA wrote me
I’ve been living with HIV and Hep C since 1993. I’ve seen far too many people die of AIDS – far too many.
There is no doubt that medications are extending lives here in the US ….Obviously, there are more unanswered questions about HIV/AIDS than ever, but to say that it’s the drugs killing people and not AIDS is not only a bit crazy, but it’s socially irresponsible and very insulting to us who lost so many friends to this disease before the drug “cocktails” came around
We all know they’re toxic, dangerous drugs But, when you have so few T-cells that you give them names (a friend of mine called his T-cells the “seven dwarves” – lol) and you are so sick that you just can’t wait for it to finally end – then you’ll try anything, buddy
Then somebody gives you some pills and a month later you’re not dead like you should be In fact, you’re up and walking and eating and laughing. Guess what? Those damned pills just saved your life
It pisses me off that some guy (who likely has never even seen an AIDS patient waste away to 70 pounds, go blind, lose his mind and die in utter agony) tells the world that the drugs are more deadly than the AIDS No one who has been around the disease for any length of time will agree with that statement. It’s borders on the criminal
If you aren’t dying of AIDS then you shouldn’t take the drugs. They might kill you. They are that toxic
But… we knew that all along, Liam.
Clearly, non-nucleoside reverse transcriptase inhibitors, or NNRTIs are a dangerous class of drug. Sustiva (efavirenz), Viramune (nevirapine) and Rescriptor (delavirdine) are all NNRTIs. They are toxic, dangerous and only for those with no other hope. But, if you are dying, they can extend your life. Whether to take the meds or die is a choice people have to make for themselves. For most there is no choice, though. They’ll do whatever they can to live.
Liam, I really wish you’d find some other way to make a splash in the world. This “information” you’re spreading around is dangerous Fortunately, only highly gullible people with absolutely no personal familiarity with the disease would believe this lunacy
I wrote back,
I’m rather touched, and equally alarmed by your message.
You said that nobody who’s watched people wither away and die would say the kinds of thing I’m writing about.
But where do you think I got my education?
In the gay community – among people who did watch friends die, on various drugs, AZT, pentamadine, poppers, fear, and everything else that was going around in the early 80s.
I don’t deny that a lot of people died. They did die – horribly
That’s important to recognize, and to deal with. What caused it? The CDC listed lifestyle – drug abuse, antibiotic abuse, poppers, meth, and an abundance of concurrent STDS in the patients who died.
Then the viral AIDS theory came around, and it was bought and sold – gay men have dirty sex – it was easy for people to believe.
Then the title AIDS was branded, and put onto Africa – I know you remember Sally Struthers begging money and food for dying African children in the 70s. What’s changed? The name.
JMA, I wouldn’t deny you or your friends the right to take these drugs
I wouldn’t take hope out of somebody’s hands, if they perceive AZT as hope, given the opportunity to read the label, and to understand their diagnosis
But you miss two points entirely –
You say you know they are toxic – even life-threatening –
And you say that “everybody knew that”
It ain’t so JMA. Everybody doesn’t know that.
In fact, these are sold as life-saving drugs, with no mention of fatal toxicity.
You also accept that an AIDS diagnosis is a death sentence, because you saw people die.
AIDS is a name given to too many illnesses.
There’s a grave danger here – if you believe that a patient will die b/c of a name association – candida for AIDS, TB for AIDS, strarvation for AIDS, drug abuse for AIDS, pregnancy for AIDS – you risk killing them.
Follow this logic – I know you won’t like it, so forgive me – but –
You take any person with any of the many, many, many conditions that the CDC or UNAIDS or whichever agency classifies as being evidence of AIDS (in gay, black, drug users, impoverished people) –
And you give them an AIDS diagnosis, with or without testing.
You enforce on them a belief that their sex is dirty – an easy fear to become prey to –
You enforce a belief that they will be dead, “like you should be” – I believe you said –
And you tell them that their only option are drugs which “everybody knows” are likely to kill you —
But wait – everybody doesn’t know that Jma.
Look for that on the sustiva ads
“Sustiva – everybody knows it can kill you.”
It ain’t there, darlin.
I can’t tell you why your friends died. I am sorry that they did.
Is it possible that their deaths were multi-factorial – was there anything predating their death – drug use, fear, other STDs, that led them to hospitalization with early chemotherapy or other easily fatal treatments?
If not, then is it possible that what was affecting the Gay comminity as it came out of the 70s – a period of heavy, drug-heavy, party-heavy, self-hate heavy isolation – is it possible that whatever illness was affecting those men, is not the same illness that we call AIDS when we talk about Africans who have no clean water, no sewage and no livelihood?
Is it possible that what was once called GRID was specific to a period and a behavior set in a subset of young men who were given no entry into the mainstream culture, and were encouraged to obliterate themselves –
Is it possible that gay men continue to obliterate themselves (dead like you should be?)
I know these are disturbing questions for you – and I apologize –
but you are wrong on at least one count.
The people I’ve learned the most from in this field, are the people who lived through it – early AIDS – and who survived, not suffering on AZT, but by changing their lifestyles – (not sexual – but health) – questioned the internalized cultural hate and fear of homosexuality and movement towards self-obliteration that you find in any isolated, beaten-up, marginalized, criminalized group of people
Most of the people active in this field – the activists, are survivors of early AIDS.
If you write me back, I’ll put you in touch with some of them.
Don’t kid yourself – if this is a fight – you’ve won
Most of the world believes that whatever happened in the gay community in the early 80s, somehow got to Soweto the next year, and hasn’t stopped since.
None of the faults in testing, drugging or epidemiology seem to matter.
People like yourself, offended that anyone should raise their voice in protest, manage to keep the protests down.
So – you’ve won.
There’s no reason to be pissed off. The world buys it. But the men who died early, dragged into hospitals, given chemotherapy for KS, intravenous fungicides – pentamadine – for pneumonia – are gone.
You can’t bring them back.
And you can’t make people remember them any better by selling Nevirapine to pregant African women.
Like I said, I would never presume to take your drugs away from you
I hope you would not try to stop me from talking about the other possibilities to people whose minds are still open.
Sincerely, and I hope kindly,