The Administration for Children's Services may well be enrolling foster kids in drug trials, even today. After all, it asked the Vera Institute of Justice to investigate its "policies and procedures" for this, not whether it should be doing it at all. As late as 2007, a search of the U.S. government's clinical trials Web site yielded one study still "recruiting" at Incarnation Children's Center, and 35 in various other stages. You can try the same search yourself. Just go to the U.S. government's clinical trials Web site and plug in these search terms:
( incarnation AND hiv ) [ALL-FIELDS]
A search done on August 12, 2009, turned up no studies then "recruiting" but several "active" and many "completed" studies. Bear in mind that this is only for "Incarnation," which has been under scrutiny in the wake of the scandal and has even removed its old Web site boasting of the trials. (The Internet Archives also show evidence of having been petitioned to remove all the ICC Web sites before the end of August 2004, but you can see screen captures of the old Web site here and here.) Apparently, it is keeping a low profile and no longer "recruiting" children.
The search results do, however, list other centers in New York City and elsewhere. An appendix to the Vera Institute's report lists at least 20 "centers," mostly operating out of city and suburban hospitals, that were referring children and adults to experimental drug trials. The foster care system employs private households, as well as orphanages, to house children. And this is just in the greater New York area. Vera reported that the National Institutes of Health had established 18-25 "Pediatric AIDS Clinical Trials Units" across the U.S. Former ICC medical director Dr. Stephen Nicholas later worked on similar trials in the Dominican Republic. U.S. government records reveal many studies on children across Latin America -- but not their locations. (One government document mentions "subcontracts with 25 sites in six countries participating in the protocols from Mexico, Argentina, Brazil, Bahamas, Jamaica, and Peru. As of July 2006, there were 1,136 pregnant women and 1,522 pediatric patients enrolled into their respective protocols.")
Meanwhile, the drug companies have declared these studies a success. The FDA has approved many drugs for use on children, so that places like ICC can just use them as part of ordinary medical care. But now that we know the drugs' horrible side effects, this is not so comforting a thought. All the drugs used in HIV treatment carry FDA "black box" warnings, described as "the sternest warning by the U.S. Food and Drug Administration (FDA) that a medication can carry and still remain on the market in the United States."
But we have another question about this "success": Why don't the kids get to share in the profits? To this day, not a single child, to our knowledge, has been paid for their services, suffering, and risk. Yet HIV drugs are money-makers for drug companies. Add the profits to the drug-testing industry, the hospitals, the foster care agencies, and, possibly, the City of New York -- and that's quite a few piles of money. (For an ethical note on this issue, click here.)
The kids are still suffering -- even if they are now grown up and have put this ordeal behind them. An April 2005 report in the New York Press described them as "drug-addled, developmentally disabled, emotionally crippled survivors of a lifetime under lock and key." When they seek medical care for any condition, they are treated as AIDS patients. They tend to be only marginally employed, if at all. Given the circumstances of their early lives, they might also have few, if any, relatives they can count on. We're guessing they could use that money, and if they could afford lawyers, they would be suing right now.
That's why we're asking Bill de Blasio, What part of this money does he think should be set aside for the kids?
