Recently, an Associated Press review found that several government-funded researchers tested AIDS drugs on foster kids, many times without giving them advocates who are tasked with looking out for their well-being.
The research trials were conducted by the National Institutes of Health and took place in the 1990s, a time when many foster care agencies were looking for ways to treat children who were infected with HIV/AIDS that weren’t widely available at the time.
The Associated Press reports:
The research was conducted in at least seven states — Illinois, Louisiana, Maryland, New York, North Carolina, Colorado and Texas — and involved more than four dozen different studies. The foster children ranged from infants to late teens, according to interviews and government records.
Several studies that enlisted foster children reported patients suffered side effects such as rashes, vomiting and sharp drops in infection-fighting blood cells as they tested antiretroviral drugs to suppress AIDS or other medicines to treat secondary infections.
In one study, researchers reported a “disturbing” higher death rate among children who took higher doses of a drug. That study was unable to determine a safe and effective dosage.
One of the most disturbing factors in all of this was that many of the children used in the research trials were not given advocates, which are independent individuals–not connected to the researchers or foster care agency–who are supposed to protect the children from any harm caused by participating in the study.
The numbers of children involved in these trials is significant. The AP estimates “5 percent to 10 percent of the 13,878 children enrolled in pediatric AIDS studies funded by NIH since the late 1980s were in foster care. More than two dozen Illinois foster children remain in studies today.”
And although advocates are required by law, many researchers felt they were unnecessary because they received permission from the state or foster care agency to enroll children in the drug trials.
“Our position is that advocates weren’t needed,” said Marilyn Castaldi, spokeswoman for Columbia Presbyterian Medical Center in New York.
But others feel that the children should have had advocates because they were extremely vulnerable and needed someone other than the state looking out for their interests.
“It is exactly that set of circumstances that made it absolutely mandatory to get those kids those advocates,” Arthur Caplan, head of medical ethics at the University of Pennsylvania, said. “It is inexcusable that they wouldn’t have an advocate for each one of those children.
He continued, “When you have the most vulnerable subjects imaginable — kids without parents — you really do have to come in with someone independent, who doesn’t have a dog in this fight,” he said.
During the course of the trials, many children suffered serious side-effects, or worse, died. But hopefully not in vain. Many argue that by participating in drug trials, the foster children benefitted from live-saving drugs they otherwise wouldn’t have been able to receive.
* Photo by M. Spencer Green / AP