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NIH Conducted AIDS Research on Foster Kids

Public Health AIDS Research on kids 2005

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#1 QueenTiye

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Posted 04 May 2005 - 04:38 PM

http://news.yahoo.co...ids_foster_kids

Quote

Researchers Tested Drugs on Foster Kids

By JOHN SOLOMON, Associated Press Writer 5 minutes ago

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.

Quote

Several studies that enlisted foster children reported patients suffered side effects such as rashes, vomiting and sharp drops in infection-fighting blood cells as they tested antiretroviral drugs to suppress AIDS or other medicines to treat secondary infections.

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.

The government provided special protections for child wards in 1983. They required researchers and their oversight boards to appoint independent advocates for any foster child enrolled in a narrow class of studies that involved greater than minimal risk and lacked the promise of direct benefit. Some foster agencies required the protection regardless of risks and benefits.

Advocates must be independent of the foster care and research agencies, have some understanding of medical issues and "act in the best interests of the child" for the entirety of the research, the law states.

QT

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#2 QueenTiye

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Posted 05 May 2005 - 08:17 AM

Hmmm.  Interesting responses. :sarcasm:

I can understand the blank stares.  What is anyone supposed to do with kids that no one wants in the first place?  What are we supposed to do about the fact that the system for caring for them is so bad off that they can wander off and get lost, and return pregnant, or get taken for medical care that might not be appropriate for them, and have no one ensure that they are getting proper care?

QT

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#3 eloisel

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Posted 05 May 2005 - 08:40 AM

Well, I've been the recipient of drugs not yet made available on the marketplace.  I'm alive because of them.  

These drugs are not some weird concoction cooked up by evil scientist to torment the poor and minority.  

Quote

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
Think about that - HIV-infected children - receiving world class care from world-class researchers at government expense.

What is the point of this story?  Be outraged that the world-class researchers world-class care couldn't save everyone of the HIV-infected children?  Or be outraged that the government picked up the tab?  Or be outraged that the government was involved in a cure for HIV-infected children?

#4 QueenTiye

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Posted 05 May 2005 - 08:51 AM

Wrong.

The point of the story is that proper supervision was not had for many if not most of the kids.  The article happens to be a fairly balanced one - making precisely the point you make - that these kids got excellent state of the art treatment because of the research being conducted.  It also points out that there is a process in place to protect their interests - there is someone who is supposed to weigh the medical decisions - is this the best care for this patient or not?  And the many of these kids did not have this protection.

You got to make a choice about having experimental drugs.  The doctors, no doubt, explained to you what might happen with the drugs, and why they believed the experimental drugs were right in your case.  Maybe they oversold the drug, or maybe they told you just the way it was.  In any event - you're an educated adult, capable of making your own health care choices, capable of seeing past bs if any doctor tried to feed you any, capable of doing research and seeking a second opinion...

These kids are supposed to have someone present for them to do just that.  Many of them did not.

QT

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#5 MuseZack

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Posted 05 May 2005 - 10:02 AM

Well, as long as they're not getting abortions, it would seem that using foster care kids as lab rats  is a-okay.  

As an aside, this is one reason I found all the moralistic finger-wagging at the 13 year old who wanted to get an abortion so disturbing-- there seemed to be no sense of empathy as to what being in the foster care system in this country entails, or appreciation for how it can warp the minds and bodies of the kids subjected to it.
"Some day, after we have mastered the wind, the waves, the tides, and gravity,
We shall harness for God the energies of Love.
Then, for the second time in the history of the world,
we will have discovered fire."
--Father Pierre Teilhard de Chardin

#6 eloisel

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Posted 05 May 2005 - 10:17 AM

Assumptions made.

My mother died when I was 9.  I went into a foster home for a few months, then went a Baptist orphanage for 2 years and 7 months, then lived in a house with my psychotic sister for about a year while my father was off drunk somewhere and shacked up with one or the other of his other two drunk 3 months wives, then I was picked up by Child Services and when they dropped me off at another institution, I took my psychotic sister and left - called the mother of a school friend who had told me I could always stay with them.  They became my legal guardians for awhile.  When their teenage son - my same age - started hassling me sexually, I left, went to court, became an emancipated adult, tapped my own social security benefits and went to court to access funds left to me by my mother.  It wasn't much money but I needed medical care.  Fortunately for me, my doctor helped me get into some drug programs to help ease the financial burden for me.  I also got a job and kept going to school.  Was I an adult?  Define adult.

#7 QueenTiye

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Posted 05 May 2005 - 11:17 AM

How old were you when you became an emancipated adult?

In any event, I am not entirely seeing your point, although I thank you for sharing your story, and genuinely respect the struggles you've endured to get  through life thus far.  

Define adult? It sounds like you were one, much earlier than most kids get to be.  I had an entire thread on the subject of guiding kids to adulthood earlier, rather than prolonging childhood indefinitely such as is the current trend, behaviorally.  

QT

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#8 Nikcara

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Posted 05 May 2005 - 12:38 PM

When I first read this, I didn't have enough of a brain ratteling in my head to give a response.  I'm not entirely sure I do now, but hopefully I'll make enough sense through the codine and other drugs I've been put on.

I have mixed feelings about this.  Naturally, I want these kids to have the best care possible.  However, there is no way these kids can have the best care - they simply don't have the money for it.  Aside from that, current HIV drugs are nasty beasts - the sides effects are bad enough that when one of the medics I know accidentally got a dirty neddle stick and was put on HIV drugs just in case she contracted it she stopped taking them after about 2 months because, according to her, AIDS seemed like it would be more pleasant (thankfully, she didn't contract.  Also, she knows what AIDS looks like better than most, so there is no point on starting in about 'she has no idea what she's talking about')
The next problem has to do with the nature of drug testing.  Drugs that are approved for adults aren't inhereintly approved for children, since children can have much different responses.  Getting a parent to allow you to test something on thier child is, understandible, quite difficult unless the illness is severe (HIV would be one of the easiest to convince parents to allow testing, I would imagine).  So some of the drugs they were testing may have been already approved for adults and the companies were trying to get it approved for children as well.  I simply don't know.
I really do wish there were better ways of keeping these children safe.  Overall, while I think it is one of the great unfairnesses of the world that children would be put in this position at all, I would rather have them get some treatment than none at all.  The drugs that they are pioneering may save their lives and many others.  Anyone who tries experimental drugs because it's the best chance they have for recovery are in a pretty bad place anyway, these kids are just starting off more desperate.  In many of the cases I'll bet this is how they get the best possible care.
We have fourty million reasons for failure, but not a single excuse  -- Rudyard Kipling

Develop compassion for your enemies, that is genuine compassion.  Limited compassion cannot produce this altruism.  -- H. H. the Dalai Lama

#9 eloisel

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Posted 05 May 2005 - 07:17 PM

QueenTiye, on May 5 2005, 04:17 PM, said:

How old were you when you became an emancipated adult?

In any event, I am not entirely seeing your point, although I thank you for sharing your story, and genuinely respect the struggles you've endured to get  through life thus far. 

Define adult? It sounds like you were one, much earlier than most kids get to be.  I had an entire thread on the subject of guiding kids to adulthood earlier, rather than prolonging childhood indefinitely such as is the current trend, behaviorally. 

QT

<{POST_SNAPBACK}>

My response was to the moralistic finger wagging and lab rats post:  "there seemed to be no sense of empathy as to what being in the foster care system in this country entails, or appreciation for how it can warp the minds and bodies of the kids subjected to it."  While my horror stories are many, what it boils down to is I understand all too well what it is to be an unfavorable statistic.

However, my exposure brings up another point.  I was 14 when I became an emancipated adult.  There were many good reasons for it back then.  Thing is, although I had the legal right to make decisions for myself, I didn't always have the experience, education, and intelligence to make those decisions.  While my experiences might have put me in the position to make adult choices, I was still 14.  Not that all my choices were bad, but at least a few have had life-long ramifications.  That is something for the abortion thread though.

I also understand about being a lab rat.  I was older - 17 - at the time.  However, I couldn't afford the drugs without being in a program, I was very heavily monitored, and it literally saved my life.   I don't see it as using those children as lab rats.  I see it as giving some hope to someone who didn't have any.



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