sprite writes
broodings from the burrow

May 4, 2005

medical mistrust
posted by soe 3:47 pm

Because I work in the health literacy field, I have to come to hear a vast number of conspiracy theories about the medical field, particularly from low-income and minority audiences. Even as recently as January, an NIH study showed a large number of African Americans believe that HIV and AIDS are a government plot to kill off large numbers of minorities and that a cure is being withheld from the public solely for that reason.

Looking back through history, incidents — Tuskegee, when the government decided not to treat the syphillis infections of African American men, and orphans being deliberately infected with malaria or hepatitis, among others — indicate that this mistrust had its origins in fact.

And it is easy to see how that mistrust could be perpetuated when you see that even if you account for education and income, minorities still lag their white counterparts in access to quality healthcare and treatment for illnesses, particuarly chronic ones.

But I hadn’t really believed that there was reason for these communities to continue with the mistrust. I was under the illusion that I merely had to battle the specters of history in order to help turn the tide. Little did I realize that I have to fight current events.

Apparently, I was wrong. “Researchers Tested AIDS Drugs on Children” — foster children in SIX states, to be specific — without their receiving the independent monitors who are supposed to advocate on the kids’ behalf. They’re the ones who are supposed to make sure that the kids are protected from reasonable risk.

“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.”

These aren’t backwoods hicks we’re dealing with. This is the NIH — the National Institutes of Health — providing the funding! These are illustrious, respected hospitals — including Columbia Presbyterian Medical Center, Chicago’s Children’s Memorial Hospital, and Johns Hopkins University.

And these weren’t your right-before-public-release treatments that have been tested up the wazoo. These were Phase I and Phase II studies — the stages of the clinical trial where a drug’s BASIC SAFETY is tested.

And what a surprise. While children did actually get access to first-rate researchers, often the treatments were dangerous, and, periodically, lethal. Some kids had to be taken off the treatments because of “serious toxicity.” Others — nearly all infants — experienced major drops in white blood cells — the one thing AIDS drugs aren’t supposed to mess with!!!

Thanks, NIH, for just making my job a whole lot harder.

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