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Author Topic: Government tested AIDS drugs on foster kids  (Read 1766 times)

Nyktipolos

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Government tested AIDS drugs on foster kids
« on: December 07, 2011, 08:34:33 pm »
Quote
WASHINGTON — Government-funded researchers tested AIDS drugs on hundreds of foster children over the past two decades, often without providing them a basic protection afforded in federal law and required by some states, an Associated Press review has found.

The research funded by the National Institutes of Health spanned the country. It was most widespread in the 1990s as foster care agencies sought treatments for their HIV-infected children that weren’t yet available in the marketplace.

The practice ensured that foster children — mostly poor or minority — received care from world-class researchers at government expense, slowing their rate of death and extending their lives. But it also exposed a vulnerable population to the risks of medical research and drugs that were known to have serious side effects in adults and for which the safety for children was unknown.

...

In one study, researchers reported a “disturbing” higher death rate among children who took higher doses of a drug. That study was unable to determine a safe and effective dosage.

...

However, researchers and foster agencies told AP that foster children in AIDS drug trials often weren’t given such advocates even though research institutions many times promised to do so to gain access to the children.

Illinois officials believe none of their nearly 200 foster children in AIDS studies got independent monitors even though researchers signed a document guaranteeing “the appointment of an advocate for each individual ward participating in the respective medical research.”

New York City could find records showing 142 — less than a third — of the 465 foster children in AIDS drug trials got such monitors even though city policy required them. The city has asked an outside firm to investigate.

Likewise, research facilities including Chicago’s Children’s Memorial Hospital and Johns Hopkins University in Baltimore said they concluded they didn’t provide advocates for foster kids.


Rest of the article at: http://www.msnbc.msn.com/id/7736157/ns/health-aids/t/government-tested-aids-drugs-foster-kids/#.TuASZ2PNlGX

I literally have no idea how to express my anguish and rage at this.

They used these poor kids as guinea pigs.
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sailor

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Re: Government tested AIDS drugs on foster kids
« Reply #1 on: December 08, 2011, 02:29:22 am »
Quote from: Nyktipolos;33612
Rest of the article at: http://www.msnbc.msn.com/id/7736157/ns/health-aids/t/government-tested-aids-drugs-foster-kids/#.TuASZ2PNlGX

I literally have no idea how to express my anguish and rage at this.

They used these poor kids as guinea pigs.

 
Meanwhile the adult AIDS community was clamoring to be included in such testing.

Of course the clamoring would be just as loud if the foster agencies didn't try to save kids lives with the latest treatments since AFAIK there were no proven treatments.

RandallS

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Re: Government tested AIDS drugs on foster kids
« Reply #2 on: December 08, 2011, 08:27:07 am »
Quote from: Nyktipolos;33612
I literally have no idea how to express my anguish and rage at this.

They used these poor kids as guinea pigs.

While I'm annoyed that protocols were not followed, I am not real upset at this. As this gave children who otherwise would have had no chance at cutting edge treatment for a fatal disease a chance at a longer/better life. They may have been used as "guinea pigs" but given that there were no non-experimental AIDS treatments that were really effective during much of the 1990s (and none that I know of tested and approved for children), it's just not something I can condemn out of hand.

Don't get me wrong, the fact that these research programs did not provide advocates as required by law deserves investigation and perhaps punishment, but a hate-on against the research itself which probably helped far more than it hurt the otherwise doomed children involved is uncalled for, IMHO.
« Last Edit: December 08, 2011, 03:46:40 pm by RandallS »
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SatSekhem

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Re: Government tested AIDS drugs on foster kids
« Reply #3 on: December 08, 2011, 03:02:54 pm »
Quote from: RandallS;33687
While I'm annoyed that protocols were not followed, I am not real upset at this. As this gave children who otherwise would have had no chance at cutting edge treatment for a fatal disease a chance at a longer/better life. They may have been used as "guinea pigs" but given that there were no non-experimental AIDS treatments that were really effective during much of the 1990s (and none that I know of tested and approved for children), it's just not something I can condemn out of hand.

Don't get me wrong, the fact that these research programs did not prove advocates as required by law deserves investigation and perhaps punishment, but a hate-on against the research itself which probably helped far more than it hurt the otherwise doomed children involved is uncalled for, IMHO.

 
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Nyktipolos

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Re: Government tested AIDS drugs on foster kids
« Reply #4 on: December 08, 2011, 09:28:33 pm »
Quote from: RandallS;33687
Don't get me wrong, the fact that these research programs did not provide advocates as required by law deserves investigation and perhaps punishment, but a hate-on against the research itself which probably helped far more than it hurt the otherwise doomed children involved is uncalled for, IMHO.

I am not against the research (at all), but rather the way the institution went about this. Like Peter said, there was more than likely plenty of adults with AIDS/HIV who would have been willing to go into testing for these drugs. I also agree with his second point as well, and that yeah, this research may have helped foster children living with AIDS/HIV, but considering that there were significant issues with the testing and that likely more than half did not have proper advocates, I am finding it hard to not view this situation as them exploiting young disenfranchised children.
« Last Edit: December 08, 2011, 09:31:24 pm by Nyktipolos »
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Tamina

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Re: Government tested AIDS drugs on foster kids
« Reply #5 on: December 08, 2011, 09:51:08 pm »
Quote from: RandallS;33687
While I'm annoyed that protocols were not followed, I am not real upset at this. As this gave children who otherwise would have had no chance at cutting edge treatment for a fatal disease a chance at a longer/better life. They may have been used as "guinea pigs" but given that there were no non-experimental AIDS treatments that were really effective during much of the 1990s (and none that I know of tested and approved for children), it's just not something I can condemn out of hand.

Don't get me wrong, the fact that these research programs did not provide advocates as required by law deserves investigation and perhaps punishment, but a hate-on against the research itself which probably helped far more than it hurt the otherwise doomed children involved is uncalled for, IMHO.

 
I whole-heartedly agree with this. What I'm so annoyed with is that the gov't agencies that agreed to this and had them sign papers saying they'd provide advocates never so much as lifted a finger to address the situation. It sounds like they were just all 'meh' about it.

RandallS

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Re: Government tested AIDS drugs on foster kids
« Reply #6 on: December 09, 2011, 08:28:36 am »
Quote from: Nyktipolos;33830
....I am finding it hard to not view this situation as them exploiting young disenfranchised children.

I doubt the intention was to exploit anyone, but that's for an investigation to determine. Medicines for diseases that mainly affect adults are seldom well-tested on children by drug companies (because of the expense of testing and general lack of corporate interest) so there would be little incentive for planned exploitation.
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