When the state assumes custody of children, it is under the presumption that they will be inadequately cared for in their natural home. One is also led to assume that the state, taking on full parental duties, will ensure the child’s safety and act in a manner befitting of their best interests. That’s what makes the stories we’re about to discuss all the more disturbing.
In 2004 and 2005, several sources reported that numerous states had given the go-ahead to use foster kids as guinea pigs for experimental drug regimens being tested by drug companies. Why would multi-billion dollar drug companies need to rely on foster kids for testing, you wonder? Well, when you’re testing experimental drug regimens that in previous trials have already been shown to have serious and dangerous side effects, it’s easier if kids don’t have legal guardians to look after them. Those pesky parental consent forms can be a pain. The child welfare department, as drug companies apparently know, isn’t nearly so careful or cautious with the young lives entrusted to their care.
The tests which first garnered outside attention were conducted by pharmaceutical company GlaxoSmithKline, and were partially funded by divisions of the National Institute of Health. (NIH) The drugs were tested on wards of the state at New York’s Incarnation Children’s Center, an orphanage, on kids as young as 3 months old. The tests at this orphanage were part of a broader series of HIV and AIDS drug trials that were being conducted on orphaned children in at least seven states nationwide. The test subjects consisted of predominately Hispanic and African-American children, primarily because these two groups tend to be over-representative of both the foster care population and those children who are born with HIV.
Perhaps the most disturbing aspect about this whole scenario was that the drugs being tested had already been shown to have dangerous, if not lethal side-effects in adults, and had been previously abandoned in favor of other treatments that were safer and far more effective. These experimental drugs frequently required invasive and painful forms of administration, such as being delivered through a “gastric tube.” It’s a plastic tube that is surgically inserted through the skin and abdominal muscles straight into the stomach. In other words, these tests often involved severe pain and discomfort. Worse yet, in many states, foster parents or biological parents who noticed that the child was much healthier off the drugs than on them were helpless to do anything about it. If they were trying to regain custody, or if a caretaker was trying to look out for the child’s best interests, the state could take the child away if they refused to go along with these experimental trials. They might even face neglect charges themselves for not going along with the treatment. It’s a perfect example of how the child’s best interests can get lost in the bureaucracy of the child welfare department.
A study done by the Associated Press on this issue found that, for the kids with HIV, “overall mortality while receiving the study drug was significantly higher in the daily (dose) group.” In other words, that’s a fancy way of saying that a scientific analysis revealed that these experimental therapies killed some of the kids they were being tested on, and the more a child received these experimental drugs, the higher their risk of dying. In any other situation this might be called manslaughter. Had a parent done such a thing, they very well could face charges of recklessly endangering the lives of their children. Apparently, the division of child welfare is immune from such burdens.
Lest readers be moved to write such children off on account of the fact that they had HIV anyway, these are not children who were “destined to die.” While no cure for HIV yet exists, there have been several promising breakthroughs in recent years. Several different methods have successfully eradicated the disease in animal studies. Though replicating such results in humans is another big step, it shows promise. Furthermore, while no cure for HIV as yet exists, over the years better treatments have been developed, to the point that a person can theoretically live indefinitely with HIV without it developing into AIDS (Advanced Immune Deficiency Syndrome), so long as they remain on treatment. HIV poses no immediate health risks so long as the virus count is kept down. We can’t rid the body of the virus, but we can usually prevent it from taking over. Unfortunately, several foster kids won’t ever get the chance to grow-up and wait for a cure.
More alarming still, this doesn’t seem to be an isolated practice. A search of ClinicalTrials.gov, a service of the National Institutes of Health (NIH), listed 957 studies being conducted in forty-two U.S. States. An additional 332 studies were taking place outside of the United States, and fifty-six had no location data, so who knows where those are occurring. This amounts to a total of 1,345 experimental drug trials being tested on children in foster care and group homes throughout the world. GlaxoSmithKline alone has conducted 4 trials similar to this one since 1995. But they aren’t the only corporate powerhouse using children as guinea pigs. Pfizer, Genentech, Chiron/Biocine, Bristol Meyers Squibb, Boeringer-Ingelheim, Abbott Laboratories, and many other companies also do such testing using foster-care populations (Scheff, 2004; Barnett, 2004; Scott & Kaufman, 2005; Goodman, 2004; Solomon, 2005; Jennings & McKencie, 2002)
Ideally, one would hope such companies care as much about saving lives as they do about peddling products. Any time a drug is being tested on human subjects it comes with a risk. Such tests need to be conducted before a drug can hit the market (in the hopes of helping people), and so some human testing is a necessary evil. Yet there’s something that doesn’t feel right about taking advantage of orphans to do it. The mere fact that these companies seem to go out of their way to test on kids who have no parents to look after them has to make one suspicious. To find out that the drugs being tested were already abandoned in adult trials because of their dangerous side-effects is more discomforting still. To hear that child welfare officials not only routinely give their blessing to the use of children as lab rats, but would actually go after anyone looking out for the child’s best interests who got in the way, shows how much they actually have the ‘welfare’ of children in mind. This story should be unsettling to all parents.