New York's HIV experiment

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New York's HIV experiment

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New York's HIV experiment
By Jamie Doran
Reporter/producer, Guinea Pig Kids

HIV positive children and their loved ones have few rights if they choose to battle with social work authorities in New York City.

Jacklyn Hoerger's job was to treat children with HIV at a New York children's home.

But nobody had told her that the drugs she was administering were experimental and highly toxic.

"We were told that if they were vomiting, if they lost their ability to walk, if they were having diarrhoea, if they were dying, then all of this was because of their HIV infection."

In fact it was the drugs that were making the children ill and the children had been enrolled on the secret trials without their relatives' or guardians' knowledge.

As Jacklyn would later discover, those who tried to take the children off the drugs risked losing them into care.

The BBC asked the Alliance for Human Research Protection about their view on the drug trials.

Spokesperson Vera Sherav said: "They tested these highly experimental drugs. Why didn't they provide the children with the current best treatment? That's the question we have.

"Why did they expose them to risk and pain, when they were helpless?

"Would they have done those experiments with their own children? I doubt it."

Power and authority

When I first heard the story of the "guinea pig kids", I instinctively refused to believe that it could be happening in any civilised country, particularly the United States, where the propensity for legal action normally ensures a high level of protection.

But that, as I was to discover, was central to the choice of location and subjects, because to be free in New York City, you need money.

Over 23,000 of the city's children are either in foster care or independent homes run mostly by religious organisations on behalf of the local authorities and almost 99% are black or hispanic.

Some of these kids come from "crack" mothers and have been infected with the HIV virus. For over a decade, this became the target group for experimentation involving cocktails of toxic drugs.

Central to this story is the city's child welfare department, the Administration for Children's Services (ACS).

The ACS, as it is known, was granted far-reaching powers in the 1990s by then-Republican Mayor Rudi Giuliani, after a particularly horrific child killing.

Within the shortest of periods, literally thousands of children were being rounded up and placed in foster care.

"They're essentially out of control," said family lawyer David Lansner. "I've had many ACS case workers tell me: 'We're ACS, we can do whatever we want' and they usually get away with it."

Having taken children into care, the ACS was now, effectively, their parent and could do just about anything it wished with them.

'Serious side-effects'

One of the homes to which HIV positive children were taken was the Incarnation Children's Center, a large, expensively refurbished red-bricked building set back from the sidewalk in a busy Harlem street.

It is owned by the Catholic church and when we attempted to talk to officials at Incarnation we were referred to an equally expensive Manhattan public relations company, which then refused to comment on activities within the home.

Hardly surprising, when we already knew that highly controversial and secretive drug experiments had been conducted on orphans and foster children as young as three months old.

We asked Dr David Rasnick, visiting scholar at the University of Berkeley, for his opinion on some of the experiments.

He said: "We're talking about serious, serious side-effects. These children are going to be absolutely miserable. They're going to have cramps, diarrhoea and their joints are going to swell up. They're going to roll around the ground and you can't touch them."

He went on to describe some of the drugs - supplied by major drug manufacturers including Glaxo SmithKline - as "lethal".

When approached by the BBC, Glaxo SmithKline said such trials must have stringent standards and be conducted strictly in accordance with local regulations.

Battle of wills

At Incarnation, if a child refused to take the medicines offered, he or she was force-fed through a peg-tube inserted into the stomach.

Critics of the trials say children should have been volunteered to test drugs by their parents.

When Jacklyn Hoerger later fostered two children from the home where she used to work with a view to adopting them, she discovered just how powerful the ACS was.

"It was a Saturday morning and they had come a few times unannounced," she said. "So when I opened the door I invited them in and they said that this wasn't a happy visit. At that point they told me that they were taking the children away. I was in shock."

Jacklyn, a trained paediatric nurse, had taken the fatal step of taking the children off the drugs, which had resulted in an immediate boost to their health and happiness.

As a result she was branded a child abuser in court. She has not been allowed to see the children since.

In the film Guinea Pig Kids, we follow Jacklyn's story and that of other parents or guardians who fear for the lives of their loved ones.

We talk to a child who spent years on drugs programmes which made them and their friends ill, and we discover that Incarnation is not an isolated case. The experiments continue to be carried out on the poor children of New York City.

Guinea Pig Kids will be broadcast on Tuesday, 30 November, 2004, at 1930 GMT on BBC Two (UK).
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/p ... 038375.stm

Published: 2004/11/30 09:21:58 GMT

© BBC MMIV
http://news.bbc.co.uk/go/pr/fr/-/1/hi/p ... 038375.stm[/url][/quote]
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Post by InnerBrat »

I think I'm going to be sick...

WTF is up with people?
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Post by Ghost Rider »

This beyond fucking sick and twisted.

This is no different then testing some pointless pet theory of can babies fly.
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Post by Col. Crackpot »

this sick, disturbing story has been posted before.
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Post by Keevan_Colton »

Col. Crackpot wrote:this sick, disturbing story has been posted before.
The article is dated today, if it's been posted already then it's a different story...and I'm saddened there's more than one.
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Post by Nieztchean Uber-Amoeba »

That's just fucking chilling. It's... :finger: :finger: :finger: :finger: :evil: :evil: :evil: :evil: :wtf: :wtf: :wtf: :wtf:
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Post by frigidmagi »

This is getting more common, if your child is on prozaic and you take him off it of it due to sideeffects. Social Services will visit you and threaten you to get the kid back on the dope, even if your kid isn't eating or sleeping on it.

Now this bullshit.

State knows best after all, my ass.

I have no doubt that Socila Serves does good at times, but they have become to powerful and to uncaring about anything other than their own authority from what I've seen. Fuck, the Social Workers should have been protecting the kids from this, not helping it along!
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Post by The Duchess of Zeon »

Is anyone really surprised by this? Our drug culture--and by that I mean the use of prescription drugs to deal with ailments on the most questionable of grounds--is completely out of control. Why do you think antibiotics are stopping to work? It's because they're used for everything. Why do you think people on prozac-based drugs go insane and become mass murderers? Could it be because they're prescribed on such flimsy grounds that many of the people who get them don't need them? No, of course not, drugs do only good for you!

Not only that, but having taken antidepressants can disqualify you from entering the military. So the mass issuing of them to children is taken out a vast segment of potential individuals who want to serve and may be weakening America's defensive stance.

Ironically for a society that stamps down so hard on "illegal" drugs, our philosophy of medical treatment is essentially based entirely around medication--mass medication at the drop of a hat. It's happening all over the western world, not just in the USA--Britain has detectable amounts of prozac in their drinking water, for christsakes. Western medicine is not at fault but the culture of medication = cure in our medical subculture is.
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Post by Illuminatus Primus »

One of my mentors, a child psychiatrist who shuns the overuse of psychoactive drugs, dissertates on this subject at length.

Incredibly, he has decided to stop offering therapy because he says the majority of patients just want a drug fix.
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Post by bohemianfey »

Jesus spunk! This is really, reaaly fucked up.
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Post by The Kernel »

The Duchess of Zeon wrote:Is anyone really surprised by this? Our drug culture--and by that I mean the use of prescription drugs to deal with ailments on the most questionable of grounds--is completely out of control. Why do you think antibiotics are stopping to work? It's because they're used for everything. Why do you think people on prozac-based drugs go insane and become mass murderers? Could it be because they're prescribed on such flimsy grounds that many of the people who get them don't need them? No, of course not, drugs do only good for you!

Not only that, but having taken antidepressants can disqualify you from entering the military. So the mass issuing of them to children is taken out a vast segment of potential individuals who want to serve and may be weakening America's defensive stance.

Ironically for a society that stamps down so hard on "illegal" drugs, our philosophy of medical treatment is essentially based entirely around medication--mass medication at the drop of a hat. It's happening all over the western world, not just in the USA--Britain has detectable amounts of prozac in their drinking water, for christsakes. Western medicine is not at fault but the culture of medication = cure in our medical subculture is.
All good reasons for extremely heavy regulation of the pharmacutical industry. As long as the profit motive drives drug companies, they will continue to emphasis long-term treatments over vaccines, overdiagnosis and even sick shit like this.
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Post by HemlockGrey »

So how do we correct this cultural problem? What can we do to ameliorate the problem?
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Post by Rogue 9 »

HemlockGrey wrote:So how do we correct this cultural problem? What can we do to ameliorate the problem?
First off, the chair for whoever put this experiment into effect.
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Post by Stofsk »

Rogue 9 wrote:
HemlockGrey wrote:So how do we correct this cultural problem? What can we do to ameliorate the problem?
First off, the chair for whoever put this experiment into effect.
I noticed this in the pirate thread. Is your solution to every criminal move "Off with their heads!"?

HemlockGrey, for a simplistic answer that is by no means complete, I would advocade educating the populace on the real story about drugs. I would not depend on A Current Affair type programs to do so, as those kinds of 'news' programs barely rate as propaganda and don't really do much except cause people to piss themselves. As far as the cultural problem goes, it would require letting go of the party line of 'drugs are bad, mmmkay' as was pointed out, 'bad' drugs are no-no but good drugs (re: legit, profit making drugs) are allowed.

If the population is properly educated on the use of drugs then they'd be much better equipped at making an informed decision.

I would also advocate putting handcuffs on social services, as what Frigidmagi described upsets me.
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Post by Questor »

Stofsk wrote:
Rogue 9 wrote:
HemlockGrey wrote:So how do we correct this cultural problem? What can we do to ameliorate the problem?
First off, the chair for whoever put this experiment into effect.
I noticed this in the pirate thread. Is your solution to every criminal move "Off with their heads!"?
It's literally draconian.

And I don't think that system was very successful in ancient Greece (or was it Rome, I can't remember and my books are in the car.)
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Post by DPDarkPrimus »

I dispise people who do this. I dispise them. Ethics and morals are not to be broken... there are rules, god damn it, and procedures... they could have gotten test subjects legally, but instead... :evil:
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Post by HemlockGrey »

First off, the chair for whoever put this experiment into effect.
And how exactly does this relate in any way shape or form to my question? I asked how we could correct the "mass medication" cultural problem identified by Marina, not the best way to punish the experimenters.

To be fair to Rogue, though, in this particular instance I wouldn't object overmuch to the death penalty.
HemlockGrey, for a simplistic answer that is by no means complete, I would advocade educating the populace on the real story about drugs. I would not depend on A Current Affair type programs to do so, as those kinds of 'news' programs barely rate as propaganda and don't really do much except cause people to piss themselves. As far as the cultural problem goes, it would require letting go of the party line of 'drugs are bad, mmmkay' as was pointed out, 'bad' drugs are no-no but good drugs (re: legit, profit making drugs) are allowed.
That's a good idea, but how do we educate them? Insert it into the school circulum? Ad spots; mandatory classes? I'm not sure how the government can go about changing an entire cultural bullet point unless it uses slogans, flashy ads, and talking points (i.e. the totally mindless "My Anti-Drug" ads)
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Post by Rogue 9 »

Stofsk wrote:
Rogue 9 wrote:
HemlockGrey wrote:So how do we correct this cultural problem? What can we do to ameliorate the problem?
First off, the chair for whoever put this experiment into effect.
I noticed this in the pirate thread. Is your solution to every criminal move "Off with their heads!"?
No. Piracy carries the death penalty still in many countries and under international law; I was just noting that it could be done. In this case, these drugs have caused undue pain and suffering followed by death to God knows how many children without their knowledge or consent. Serial murder is a capital crime in the United States. It does not follow that I advocate the death penalty for all criminal activity.
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Post by Stofsk »

When HemlockGrey asked the solution to a cultural problem, and you pipe in with a death penalty to the criminal event, which is irrespective of HemlockGrey's question, then it's reasonable to wonder at what the hell you were going on about. You may not want all criminals to have the chair, but when you reply to someone who is asking a completely different question, then you will be called on the relevance of your posts. Namely, how do we solve the pill-popping mentality in our cultures?
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Post by bohemianfey »

It never ceases to amaze me that human beings are so immoral and corrupt. The only way this is going to stop is if the people stop it and we all know that's not going to happen. The government and companies get far too much money from the pharmacutical profits to put a stop to it. After all, money makes the world go 'round.
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Post by The Duchess of Zeon »

For starters, we could ban the advertising of drugs, which as we all know to well is very, very legal at the moment. It didn't used to be. All that advertising does is attract people who go to their doctors' offices and say "Hey, is this drug I saw on TV something I need? I think it is, please prescribe it to me."

That, combined with the fact that the producers pressure doctors into saying yes to people like that with all sorts of barely-legal gimmicks.

So we need to clamp down on gift-giving by drug companies and have ethics boards capable of vigorously enforcing it; simultaneously we need to ban every single form of advertisement about drugs, period, whatsoever, that is produced by the drug companies.

WIth those two things gone we can work on, for example, establishing higher standards for psychiatrists, who currently can prescribe drugs. I would go so far as to say the privilages of psychiatrists to prescribe medication should be revoked. Instead they should have to write out a recommendation which the patient would take to their MD and said individual, who has much more specialized training in physiological results of medication, would make the final decision. It might be wise to also revoke the prescription rights of ARNPs and PAs, forcing someone to go to the highest level of trained medical professional, an MD, to get a prescription drug.

I suspect, furthermore, that the current laws regarding drug companies are sufficient but that enforcement is lax. Perhaps enforcement of business regulations for drug companies could be given to a more aggressive organization rather than the FDA--the DEA comes to mind, for starters. Might as well find some legitimate use for it.
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Post by Frank Hipper »

The Duchess of Zeon wrote:For starters, we could ban the advertising of drugs...
This is going to be bit OT, but...

Does anyone think that the bill for advertising such critically important and life saving drugs like Ambien and Levitra could have anything to do with my recreational and frivilous insulin skyrocketing in price by FIFTY FUCKING PERCENT in the past five years?

A phial of NPH Insulin cost me 20 bucks in 1999, today it's nearly 32 bucks for the same thing. The only difference are the number of sleeping pill, pep pill, and filthy fucking Smilin' Bob Enzyte commercials I see to link the increase.
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Post by Gil Hamilton »

Of course this is sick, but it doesn't suprise me at all that it happened. I've become very well aware recently, about how damn shady pharmecuticals and medical experimenters can be. Ever heard of Thalidomide? Where the drug companies consistantly got severe disformities in their animal test subjects when testing whether the drug bypassed the placental barrier, ignored their own research, and marketed their new wonder drug for damn near everything but particularly that it eased pregnancy pains. Guess what? Thousands of babies ended up with gross deformities, so much that President Kennedy made a televised address to have all Americans search their medicine cabinets and pitch the stuff. (oddly enough, it also went a long way to getting the country ready for legalized abortions) The pharmaceuticals who created the stuff caused all that knowing what it was doing in studies and pushed it anyway, to make a bunch of bucks on peoples love affair with taking pills for their problems.
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Post by salm »

over here it´s regulated like this:
medicine that is only available on presrcription may be advertised to doctors only.
stuff that you can get without prescription such as aspirin can be and is advertised as long as they put this silly disclaimer in the end.
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Post by Dalton »

Seems that most drugs these days have side effects that are just as bad as the condition they're supposed to relieve - in fact, nearly every medication I can think of "may cause diarrhea". Someone I know was on a certain birth control pill that caused severe migraines, nausea and blackouts, and my cousin's epilepsy medication rotted her teeth so badly that she's going to get them all pulled and replaced with dentures and she *still* has seizures. Pharmaceutical corporations are just like any other, just out to make a buck, which is probably why importing drugs from Canada isn't legal with some flimsy quality-control excuse. It's despicable, and this unannounced testing of experimental drugs on children is even more so.
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