In early 2004, independent journalist Liam Scheff set off a firestorm of allegations against New York City’s Administration for Children’s Services (ACS) and Incarnation Children’s Center (ICC) in Harlem, with an article he posted on indymedia.org. His story, “The House That AIDS Built,” revealed that, throughout the 1990s, experimental HIV drugs had been tested on HIV foster children at ICC.

Since then, ACS has been under fire from charges of inappropriately enrolling as many as 465 foster children in HIV clinical trials. The agency has also been accused of racism, some comparing the trials to the Tuskegee syphilis experiment, as 98 percent of children in foster care in New York City are persons of color.

Almost two years later, the controversy still burns.

At ACS’ request, the Vera Institute of Justice has undertaken a comprehensive review of the trials in question. While that investigation is currently underway, ACS has already drafted new protocols for the participation of foster children in clinical trials, though it insists that no evidence of any wrongdoing in the past has been found.

Pending approval of the new procedures by the state, ACS will resume enrolling foster children in trials. Though the new procedures go far to protect ACS from such charges in the future, it remains to be seen whether or not they will give parents whose children are in foster care and foster parents greater say over whether or not their child is enrolled in a clinical trial.

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.

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 caseby-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 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.

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.”

SURVIVING THE PRESENT

Though ICC is no longer licensed to conduct trials, many children are still living and/or being treated there for HIV. The drugs they are given, particularly AZT, have strong and often debilitating side-effects. Some of the children living at ICC were removed from their parents’ or foster parents’ homes because they either refused to take the drugs or their parents would stop giving them the drugs when they would become ill.

On Saturday, Oct. 29, a group called Parents in Action held a protest outside ICC. The ten picketers marched in a circle outside the front door of the four-story, red brick building, shouting, “Incarnation, shut it down! ACS, stop drugging our children!” Though they came out to march, the parents would not speak to The Indypendent for this article because they were afraid of jeopardizing their cases with ACS.

Whatever the results of Vera’s study, kids are still growing up with HIV, struggling between the demands of normal adolescence, like school, and the debilitating effects of the drugs they must take. In fact, many of the clinical trials underway today (as listed on www.clinicaltrials.gov) are studying the long-term physical, psychological and emotional effects of HIV drugs on children.