Testing new drugs for HIV

Wow, that's completely wack--not the ICC itself, but the truly evil spin Scheff has managed to put on it. What's his agenda, other than self-promotion, "Oh, look, I uncovered an actual conspiracy!"

Well, he hasn't.

The ICC is a legitimate medical facility offering care to HIV kids in NYC. It's not a "secret laboratory" doing heinous experimentation on helpless little kids.

http://www.icc-pedsaids.org/


It's "experimental" only in the sense that basically all HIV treatments are "experimental"--there's no "magic bullet" for these diseases yet. Doctors are still kind of in the "throw stuff at it and see what sticks" stage of research. So yeah, I suppose you could characterize it as an "experimental facility", but not the way Scheff wants to play it.

From his article:
The drugs being given to the children are toxic – they’re known to cause genetic mutation, organ failure, bone marrow death, bodily deformations, brain damage and fatal skin disorders.
Right: many of the drugs they're trying against HIV are toxic. As a matter of fact, many of the drugs they use routinely against lead, mercury, and arsenic poisoning are toxic, but that doesn't stop doctors from using them. Hey, the fluoride in your toothpaste is toxic. Penicillin is toxic. Iron supplements are toxic. Lots of drugs and medicines are toxic. That doesn't signify.

If the children refuse the drugs, they’re held down and have them force fed. If the children continue to resist, they’re taken to Columbia Presbyterian hospital where a surgeon puts a plastic tube through their abdominal wall into their stomachs. From then on, the drugs are injected directly into their intestines.
Well, um, yeah, that's how it works in any pediatric cancer care center or PICU: if the kid won't take the medicine, he gets it through a tube, somehow.

The children at ICC are enrolled in drug trials without their knowledge,
And without the consent of their parents or guardians.
Well, yeah. The place was established in 1989 as a place specifically to house and treat NYC kids with HIV who were dumped on the care of The State because their parents couldn't care for them anymore, for whatever reason. So their parents have abrogated any rights to have a "say" in their treatment. When DCFS takes your kid away from you and your kid goes into the foster care system, you don't get any "say" in his medical treatment anymore--that's up to DCFS and his foster parents. That's how it works.

And as for the kids' consent, no kids anywhere are ever allowed any say in what medical treatment they receive. Either their parents, or their legal guardians, or The State make that decision for them. Why pump this up, making it sound unusual, when it's not?

And hey, lookie this:

http://www.totallykate.com/instyle.htm
cuddle from the captain

InStyle Magazine - Dec. 1997
by Lisa Blake Berke - photos by Deborah Feingold

With her work at the Incarnation Children's Center for HIV-positive children, Star Trek: Voyager's Kate Mulgrew has learned that love is the most powerful medicine of all

"When a child's plight breaks our heart, we're supposed to do something," says Kate Mulgrew in the garden of the Incarnation Children's Center in upper Manhattan. "We're supposed to reach out, put the child on our lap, kiss him and love him." Mulgrew, with two sons of her own, has an affinity for kids, and especially those at ICC. These children are homeless and infected with the virus that causes AIDS.

Housed in a former convent, ICC is New York City's only residence for HIV-infected children and provides a variety of medical and social services. But its primary function is not so clinical: to give the children some essential TLC. "If each child does not have a grown- up to hold him every day, consistently and systematically," explains Mulgrew, who first learned about the center through a friend two years ago, "even if the child survives AIDS, he will not know about self-esteem or well-being." Since 1989, more than 700 infants and children have occupied ICC's modest 18-bed facility. Parents, many of whom are battling drug addiction, are encouraged to make regular and highly structured visits, with the eventual goal of caring for the children themselves...
Would Kathryn Janeway be in there hugging kids if it was some kind of evil secret laboratory experimenting on helpless little kids with ghastly drugs?

Scheff thinks he's uncovered some big conspiracy, and he wonders why he can't get wider publicity for it, why the major news outlets are giving him the big "ho-hum". It's because it's not a conspiracy--it's legit. Even the Post couldn't get a wider media dissemination of their version of the story.

ABC News visited there a couple of years ago, and didn't seem to notice any evil experimentation going on. As a matter of fact, far from dying of horrible side effects from toxic drugs, by 2002 most kids were surviving.

http://abcnews.go.com/sections/us/DailyNews/HIV_teens020424.html
But advances in HIV-drug treatment over the past 10 years have enabled these children to live longer, bringing the first generation of "AIDS babies" to adolescence and the cusp of adulthood, and a world of unknown, unanticipated challenges.

"We were losing so many children," said Sister Bridget Kiniry, one of the founders of The Incarnation Center.

"There was a period of time when we were having two or three funerals a month," she said. "We really prepared for funerals. … Then when the protease inhibitors became available to the children, that changed everything radically. Children that you cared for on a daily basis, where you did not know whether they even had a future, now they had a future."

< snip >

At the Incarnation Children's Center, which has been New York City's only residence exclusively for children born HIV-positive since 1989, they've decided to deal with some of the issues by becoming an extended family for their 18 children, who range in age from 20 months to 16 years.

The administrators, doctors, nurses and volunteers act like surrogate parents, adopted big brothers and sisters — and sometimes whipping posts for the children, who come to the center from foster care, when their parents grow too ill to care for them, or when they are orphaned.
 
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