Wednesday, May 04, 2005

What Fresh Hell: An Update

(See below for my first take on this story)

It appears that I may have been unfair to the New York City agency charged with taking care of foster children. They weren't the only folks who took part in this "clinical trial"

The Washington Post reports that a number of jurisdictions were enrolled:


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.

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.


Well, yes, world-class health care is a good thing for the children. Monitoring the testing and the side effects (including death) would be involved, one would assume. Unfortunately, in this case, one would be wrong.

While the program required that advocates for the children be appointed and be involved, in all too many cases, no such advocates were appointed and were involved.

Who in federal government was monitoring the program? Who was supposed to? This is unconscionable.

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