Didn’t the children die of AIDS?

This theory about the deaths of the children participating in drug trials at Incarnation Children’s Center persists–particularly in The New York Times and The Village Voice.  It’s a convenient explanation–if you’re in the profitable drug trials business–but unfortunately not based on evidence.

Obviously, the claim that a drug “extends life” depends on a benchmark of when the patient was supposed to have died.  There is no such evidence-based benchmark in AIDS research, for children or adults.

Obviously, the claim that any drug “extends life” must be based on a benchmark, a date on which the evidence shows they would have died without the drug.  There is no such benchmark, for adults or children, in AIDS research.

Also, telling patients when they are going to die based on no evidence, or treating them as if they are going to die anyway, is unethical.  The children at the Incarnation Children’s Center (ICC) orphanage were treated as if they were going to die anyway.  Based on this belief, no one asked if the risks of the drugs–the pain, even life-threatening illnesses–were worth it.

The CDC has established a definition of pediatric AIDS.  It requires a positive “HIV test” plus any one of 23 illnesses.  By contrast, here are some of the reports of children at ICC:

  • A care worker described one boy as bleeding from every orifice in his body.  There is no comparable AIDS-related condition on the CDC’s list.
  • A previously healthy six-year-old girl went blind from a stroke, and then died about three months after arriving at the center.
  • Several children suffered a “rash” after taking nevirapine.  This is Stevens-Johnson syndrome, a known side effect of the drug in which the skin literally burns off the patient’s body, exposing them to opportunistic infections and death.  Did the doctors describe these as AIDS-related infections?

Most disturbing is that all the children described above were healthy before they took the drugs.  In fact, their very reason for being held at ICC was a lack of “adherence” to drug regimes; their parents, grandparents or other caretakers had not been giving them HIV drugs because they noticed they were doing fine off them and getting sick on them. (See “Adherence” section here for how drug-taking was enforced at ICC.)

The Vera Institute’s report and an independent investigation both showed that some children were enrolled in trials on several drugs at a time.