In 2005, while the foster kids scandal was at its peak, the city's Administration for Children's Services changed its policies for enrolling children in drug trials. An article in The Indypendent discussed this and reported that foster care reform advocates were still not pleased.
If the agency has made any further revisions to its policy, we haven't heard about it. This must be the one that Bill de Blasio approves of and cites as sufficient reason to stop worrying about all this. Mission accomplished?
We don't think so. Here is an excerpt from The Indypendent's report, with our commentary:
NEW PROTOCOLS ESTABLISHED
ACS’ new policy establishes safeguards and makes previously existing requirements more explicit, to ensure that proper consent is obtained and documented, and that children and parents are adequately informed of a trial’s possible risks and benefits. Enrollment will also be considered on a per-child basis, rather than the blanket enrollments that occurred in the past.
[Notice the admission of "blanket enrollments." This is true. Many of the children at Incarnation Children's Center were enrolled in groups, without specific consent from their families or caregivers. However, enrollment on "a per-child basis" is not foolproof, since the parents would of course be given limited information. For instance, information that their currently healthy child will die without HIV medication is not something confirmed in the peer-reviewed literature. There are no properly controlled studies comparing death rates in medicated and nonmedicated children. ICC's former medical director admitted that many of the children there were taken from their families because of "nonadherence" {See "Adherence" Section here} -- the families had noticed the children did better off the drugs and therefore discontinued the treatments. Some HIV-positive children have lived to adulthood without HIV drugs, confirming their judgments.]
According to ACS’ assistant commissioner for the Office of Children and Family Health, Elizabeth Roberts, the agency will require medical facilities conducting trials to appoint an independent advocate for each child. On a case-by-case basis, ACS will also bring in an independent physician who has expertise in the child’s condition, and is not connected with the trial, to evaluate the proposed treatment.
[The commissioner does not say how the "independence" of the "independent advocate" will be determined. And any doctor "who has expertise in the child's condition" would be an HIV specialist, one specifically trained never to say no to the drugs -- "hit early, hit hard" -- with consequences for their career if they do not follow this protocol. Because of the great number of HIV trials out there, it is unlikely that a given doctor will be unconnected to any trials. That they are not connected with this one specific trial is only a slight safeguard. And how can they "evaluate the proposed treatment" if it is experimental? No one knows the effects of an experimental treatment until it is tested.]
The new protocols also stipulate that if there is disagreement among the parties involved in a child’s welfare, the case will be referred to Family Court. While this affords an added measure of due process, it is questionable whether or not a parent who disagrees with the medical review team’s recommendation would be able to mount a successful case.
[Family Courts in New York have shown a marked indifference to the concerns of families -- especially minority families, says Parents in Action founder and reform advocate Rolando Bini. It is indeed "questionable" whether a poor parent, without access to a lawyer, could mount a defense involving complicated medical information. Many times, also, there is no one to speak for a child who has truly been abandoned. Former ICC worker Mimi Pascual confirms that most of the children there now are truly orphans. No one is there to advocate for them.]
As attorney Carolyn Kubitschek told The Indypendent, “I think it would be very difficult for a parent to win. In that situation, there are already two doctors who say, let’s do the treatment. One is the child’s treating doctor, who proposes the treatment, and the other is the independent doctor, who says go ahead and do it. Then there’s the parent, who has nobody on her side, and no money to hire anybody on her side. It becomes quite one-sided, because the judge who has to make a decision only hears the views of the people who can afford to get the evidence into court.”
Upon enrollment in a trial, the child would be assigned an independent advocate, who as stipulated by federal regulations may or may not be a doctor, by the hospital conducting the trial. “If a parent or child told us they were unhappy with the independent advocate assigned to the child, and the child was in our care,” Roberts said, “we would notify the hospital that a new independent advocate, satisfactory to the family, must be assigned in order for the child to continue in the clinical trial.”
[This policy asks that the parent or child protest the independent advocate they are assigned -- not the toxic drug treatments. So if they petition for a new advocate, are they guaranteed a voice in the treatments? Where do these independent advocates come from? AIDS activist organizations or social services groups? Social workers trained on only one side of the issue?
The Nuremberg Code makes no mention of an "independent advocate." Indeed, it asserts that the research subjects themselves -- in this case, children -- have the right to say no to further dosing with the drug. This is exactly what the children in these studies have been reported to have done, and quite dramatically. Here is the relevant principle:
"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."
It doesn't say "independent advocate" and it doesn't exempt small children. It says "the human subject." And when stomach tubes are considered to enforce adherence to treatments, this has clearly gone too far {See G-Tube" section here}.]
