The defenders of these trials say that enrollment in them gave poor, disadvantaged children "access" to new, possibly life-saving drugs. However, many of these children did better off the drugs, and their HIV status is still unclear.
"Access" implies that people were trying desperately to enroll their kids in drug trials. But no one has come forward with a single grateful family or patient. Actually, families often wished to keep their kids off the drugs. Former Incarnation Children's Center (ICC) medical director Dr. Katherine Painter admitted that the Administration for Children's Services (ACS) took the children from their families for "nonadherence" -- when someone suspected they weren't taking their meds. (See "Adherence" section here.)
And how did they know that? The kids' health improved. Any child whose condition improved was suspected of being neglected. If they had taken the drugs, they would have been sick.
So, ironically, ACS took children away for refusing the drugs -- and then enrolled them in clinical trials for more drugs. Sometimes several drugs at a time.
The drugs had truly frightening side effects -- usually daily nausea, vomiting and diarrhea, but often even worse (see table of side effects here).
Nurses and other caregivers reported frightened, desperate children who would do anything to avoid taking their medicine. And when they succeeded, the system had an answer for this -- stomach tubes. (An interview with former ICC medical director Dr. Katherine Painter, who talks about this is available in audio and transcript here.)
What if they were ticking time bombs? What if they would have died of AIDS, and sooner, if not for the HIV drugs? It's what we almost always hear about these drugs: They "extend life."
We have found no formal studies exist for how long HIV-positive children live off the drugs. An informal one, though, is the case of Lindsey Nagel of Minnesota. After her parents adopted her from Romania, they found out she was HIV positive. They put her on AZT and watched her go into painful spasms, grow more slowly, and lose physical coordination. Finally, making a choice to take away the pain in their daughter's certain-to-be-short life, they took her off the drug. The Nagels expected their daughter to die before the age of two, then five, then high school, then . . . she turns 19 this year. (Lindsey's parents are interviewed in the current documentary House of Numbers.)
We believe the trials conducted on New York City foster children violated the Nuremberg Code and the Helsinki Declaration, two statements of research subjects' rights prompted by the horrors of Nazi research during World War II. American law protecting human research subjects is based on these documents (discussed here, with links to sources).
We note especially two points addressed in the Nuremberg principles:
"9. During the course of the experiment the human subject should be at liberty to bring the experiment to an end if he has reached the physical or mental state where continuation of the experiment seems to him to be impossible.
"10. During the course of the experiment the scientist in charge must be prepared to terminate the experiment at any stage, if he has probable cause to believe, in the exercise of the good faith, superior skill and careful judgment required of him that a continuation of the experiment is likely to result in injury, disability, or death to the experimental subject."
