HIV Children and Orphans are Defacto Test Subjects

Children with HIV are increasingly finding that their status is that of involuntary research subjects, not victims. In December 2004, for example, the journal Nature Medicine reported that since the early 1990s, HIV-positive orphans have been the subjects of “dozens of national clinical trials run by researchers at Columbia University Medical Center and other [New York City] area hospitals.” Mammoth pharmaceutical corporations such as GlaxoSmithKline, the manufacturer of zidovudine, have sponsored the testing of antiretroviral and other pharmaceuticals on scores of HIV-infected orphans housed in New York City’s Incarnation Children’s Center (ICC). This institution for the HIV-infected is run by Catholic Charities in Washington Heights…

Some of the candidate AIDS medications are being tested to determine their toxicity. Children as young as four were given cocktails of up to seven potent medications, although physicians are normally reluctant to give young children even approved powerful medications. Little if any benefit accrued to the infants from these risky exposures, because although some were HIV-positive, they were too young to have developed AIDS. One study is of “Stavudine…Alone or in Combination with Didanosine,” a combination that has killed adult women. An experimental vaccine administered to children as young as twelve months utilizes “live chicken pox virus,” even though it can trigger the disease itself. A study titled “HIV Levels in Cerebrospinal Fluid” required that infants undergo a spinal tap, a risky, invasive, and painful procedure. There was even a study on HIV-negative children that used an experimental HIV vaccine. By law, such a nontherapeutic study on healthy children can convey only minimal risk, but the vaccine’s risks are unknown.

Also, some of the experiments did not involve HIV therapeutics: One drug trial tested a herpes medication “for tolerance, safety and pharmacokinetic” information; another investigated reactions to a doubled dose of measles vaccine—in six-month-old infants.

For its part, Columbia University released a statement denying that the drugs’ side effects were serious enough to warrant discontinuing treatment. However, this should have been the parents’ call, not the university’s or the ICC’s. But guardians and parents who adopted HIV-infected children have found the ICC, ACS, and researchers arrayed against them when they have tried to take children off medications they found to be harmful.

In explaining her take on this struggle, Dr. Painter has said, “We’re having an increase in referrals over the last years to deal with medication adherence. There are a fair number of children whose HIV illness may be well controlled but whose families are experiencing difficulty complying with the child’s medication regimen.” By “referrals,” Painter means children who are torn from parents and returned to the various agencies when these parents and guardians balk at dispensing the investigational drugs.

Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington

Orphaned Misfit Holiday

Quote

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Back at the apartment, Roxy was hanging up our stockings and making invitations to our annual Christmas Eve dinner party for friends who don’t visit family for the holidays. She’d rented a deep fryer and Guitar Hero, and had a Charlie Brown tree in every room. The holiday season fuelled Roxy, filled her with kindness for all the local orphaned twenty-something misfits. I just wished the holiday was over. In January, I can start over, I thought, along with everyone else.

Holding Still For As Long As Possible by Zoe Whittall

This novel won the Lambda Literary Award: Transgender. A review can be seen HERE. More award winners can be found on the Amazon.com  Lambda Literary Award: Transgender listing.

Camel Racing and Child Slavery

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This is an excellent book about an extremely difficult topic. The main character is a young orphan boy who is sold into slavery by his uncle because the family is poor and cannot afford to care for the child. A rich Sheikh purchases the boy and forces him to work as a camel racer.

While the book does not describe the grisly deaths that camel racers often face, or the beatings and abuses that come with being enslaved, it is clear the child is not surrounded by nice, much less loving, people.

It also has a fairy tale ending, which makes the harsh realities easier to handle.

QUOTE:

“That evening, as Azad and Asfur sat with the Bedouin around the fire, one of them played on his rababa. He sang about a brave little boy and his camel…who had found a home at last.”

Azad’s Camel by Erika Pal