When the new foster parents first brought their daughter home in 1995, she was 3 days old and already going through withdrawal from the illegal drugs her birth mother had taken. For the first six to eight weeks, she suffered sneezing and hiccuping fits, stiffening of her limbs and inconsolable crying as she fought off the inherited addiction. But that struggle, however difficult, was minor compared to what loomed: Her birth mother had AIDS, and the little girl’s foster parents, a Chicago-area suburban couple who wish to remain anonymous, were told by doctors that their daughter might have HIV, the virus that causes AIDS.
In the late 1980s and early 1990s, AIDS was considered terminal. But there was hope, the family was told.
The Illinois Department of Children and Family Services, the girl’s legal guardian, had enrolled her in an experimental drug trial at Children’s Memorial Hospital in Chicago. The medical researchers there hoped a new drug called AZT could suppress the HIV virus in infants who are exposed to the virus in the womb. It was one of dozens of similar HIV drug trials that have taken place in the United States over the years. According to reports, nearly 14,000 kids in seven states were enrolled in these trials, about 10 percent of whom were children in foster care.
Nearly 200 of these kids were in Illinois.
For months, the new parents followed the doctors’ instructions, and gave their daughter the new drug. Nearly a decade later, she is a healthy child. She was legally adopted by her foster parents but still visits her birth mother, who is living with AIDS.
Despite the outcome with this family, and even though most of the trials ended years ago and are today credited with saving the lives of many children who had been exposed to HIV, some questions remain as to whether the hospital, DCFS and child protection agencies across the country broke the law in failing to make sure these children had an advocate—someone looking out for their best interests—when they were enrolled in the drug trials.
The Cook County Public Guardian, the U.S. Office of Human Research Protections and a congressional subcommittee are investigating whether anything illegal occurred.
As the story unfolds, many have sought to compare it to the infamous Tuskegee syphilis scandal that came to light in the 1970s, when it was revealed that for 40 years, black sharecroppers who had syphilis had been subjected to medical experiments by the federal government without advice or consent. In 1997, President Bill Clinton apologized publicly for the experiments, calling them a moral outrage and clearly racist.
The majority of the foster kids in the HIV drug trials were African American (at least in Illinois), low income and without representation. The Washington Examiner, a newspaper in the nation’s capital, wrote, “poor, sick children were being used as medical guinea pigs.”
The story that started it
There would be no investigations—and not even the county guardian, the official charged with advocating for Illinois foster children, would have known about these drug trials—if not for a May 4 story by the Associated Press.
It charged that researchers skirted federal law by enrolling hundreds of foster children, without providing many with an independent advocate to watch out for their interests.
The story caused a sensation across the country. It has been praised by some for making the issue public. But it has been criticized by others for mischaracterizing information and sparking a firestorm in the media.
“We usually don’t comment if someone considers the context of a story wrong,” said Jack Stokes, media relations director for the Associated Press when called by Chicago Parent. “We prefer to address factual mistakes.”
Stokes asked for and received an e-mail of questions which listed three specific complaints about the story.
He responded with a 201-word e-mail calling the reporting meticulous and explaining that the package of stories (the main one written by John Solomon) prompted a congressional hearing. The reporters, Stokes writes, “spent more than four months interviewing dozens of foster care and research officials and filing records requests in several states to examine the use of foster children in AIDS experiments.”
He continues, “Most of the children never got the benefit of a basic protection afforded by federal law and required by some states.”
But Diane Jackson, a spokesperson for DCFS, says the state had to find some way to treat children exposed to the HIV virus, and at the time, the drug trials seemed their only opportunity.
Julie Pesch, a spokesperson for Children’s Memorial, says its researchers strongly deny any wrongdoing, but are so angry about the Associated Press story that they now refuse to speak with reporters. That includes Dr. Ram Yogev, medical director for special infectious diseases at Children’s Memorial, who headed up the federally-funded drug trials in Illinois.
Illinois has its own policy—stricter than the federal government’s—requiring foster kids participating in drug trials to have advocates. But apparently, DCFS did not adhere to this policy. DCFS still has not yet explained why.
And many now question whether officials and researchers, however well intentioned, should, on their own, be trusted to fully ensure the safety of society’s most vulnerable children.
“It certainly took us by surprise,” says Robert Harris, the Cook County Public Guardian. His office represents about 12,000 abused and neglected children in the courts, including the county’s foster children, most of them poor and minority. Harris believes not notifying the courts and the public guardian was unlawful, and his office has begun an investigation.
“I can’t say [the drug trials] were a horrible thing, because there was no medical regimen for people with AIDS in the early 90s,” Harris says. “But by the same token, they are our children. I want to make sure that whatever protections are available were given to these kids.”
The Associated Press had inadvertently poured salt on an old wound.
The editorials and quickie television reports generated by the story often brought back memories of Tuskegee and sometimes obscured the fact that HIV-exposed children in the 1980s had few, if any, options.
“We’ve had hate letters,” Pesch says. “Dr. Yogev ... he’s [portrayed] all over the country like he’s Mengele,” she continues, referring to the Nazi doctor who helped run the Auschwitz death camp.
She did not flag any factual mistakes in the original story, but says it incorrectly “implies that [researchers] did something unethical.”
Marjorie Speers, executive director of the Association for the Accreditation of Human Research Protection Programs, says the fears touched off by the story are completely misplaced. The drug trials conducted by Children’s Memorial were “nothing like the way the Tuskegee syphilis study was done.”
Several families involved have said that the children received otherwise unavailable medical care.
“You have to go back to the situation in the 1980s,” says Speers. “What was going on is people were being diagnosed with AIDS and then dying.”
The Associated Press did say the trials ensured that some foster children “received care from world-class researchers at government expense, slowing their rate of death and extending their lives.”
But Pesch still believes, however, that the Associated Press used “salacious language.”
The reporters stated that 40 percent of the children involved in drug trials at Children’s Memorial were foster kids. And they also wrote that the researchers only promised state officials to provide advocates “to gain access to the children.” To many, that meant the hospital had deliberately targeted foster kids.
But to Speers, the high number of foster kids taking part in the studies makes sense.
“I suspect it’s related to social status,” she says. For example, children exposed to opiates in the womb are both more likely to have the HIV virus and more likely to end up in a state foster care agency.
The reporters also quoted a spokesperson for the Wisconsin Department of Health and Family Services as saying her state “has absolutely never allowed, nor would we even consider, any clinical experiments with children in our foster care system.”
But Mark Campbell, who directs Wisconsin’s child welfare policy, tells Chicago Parent that Wisconsin did not have a large population of HIV-exposed children, and never had to confront the dilemma faced by Chicago or New York. Wisconsin still prohibits tests that target foster kids as a group, but if it were medically necessary, the state “would certainly not prohibit a foster child from taking part in a drug trial,” Campbell says.
Medical researchers may be even more upset with how the Associated Press story was reported in other media.
The May 4 story noted that the U.S. Office for Human Research Protections, which monitors people who participate in federally-funded research, was conducting a probe into the use of foster children. Pesch says at least one Chicago television station that picked up the original story made it seem like Children’s Memorial was the subject of a federal probe.
Pat El-Hinnawy, public affairs specialist for the U.S. Office for Human Research Protections, refuses to discuss Children’s Memorial Hospital, let alone confirm or deny an investigation. She will say the only official ongoing investigation involves drug trials conducted by Columbia University Medical Center and New York Presbyterian Hospital.
“I would love to educate the public on this,” Pesch says. But the doctors who oversaw the children are too leery. “The last two months have been a horrible experience,” she says. “We are just done with the media.”
The suburban foster parents say they never thought to question their daughter’s participation.
Still, “these are extremely powerful drugs being given to infants and it is a little scary,” the father says. And, years later, they are still not sure who gave permission for the tests.
Every day the new parents had to orally medicate their baby with a drug called AZT. AZT had been successful in treating AIDS in adults, but was not yet tested in children.
Researchers hoped the drug would stop HIV from developing in exposed newborns.
In those days, AIDS, and how the virus was transmitted, were still mysteries. For months, the parents changed their daughter’s diapers wearing rubber gloves.
She came through it all. Although they don’t remember exactly how long they gave her AZT, it wasn’t more than a few months. Shortly after, they were told their daughter did not have HIV. “A tough little cookie,” her mother says.
For the next two years their daughter got monthly blood work-ups at Children’s Memorial.
Both parents praise the staff and the treatment their daughter received. The long mornings they had to spend in the hospital became something they almost looked forward to.
“She was getting the best health care you can possibly imagine,” the mother says.
“There was a sense of urgency,” the father says, “as if everyone there knew they were doing something important.”
Still, some of their questions have yet to be answered.
“I do wonder who is compiling all of this information and what are the implications” of taking AZT, the father says. “I don’t even remember anyone saying anything about the possible side effects of AZT. [As foster parents, we could only do] what we were told.”
Harris, the public guardian, believes the state might have fast-tracked kids into the drug trials.
In May, shortly after the story broke, he conducted an investigation to find out whether state judges who oversee the foster care system had been informed by DCFS and got permission. DCFS agreed to provide Harris with a list of children involved in the studies. Harris’ staff is now digging through the court records.
Diane Jackson, the DCFS spokesperson, says the state has legal custody of children in foster care, and all medical decisions were the department’s responsibility.
The researchers did not lobby state officials to use these children, she adds. DCFS has an AIDS project director who worked with doctors and review boards at research institutions such as Children’s Memorial to devise treatment plans.
Since 1989, DCFS says they have identified 931 state wards who were either exposed to or tested positive for HIV, although only about one-third developed AIDS. Jackson says the department believes up to 193 of those children took part in experimental studies.
“We struggled with a dilemma,” Jackson says. “If we hadn’t put those children in the trials, some might have said we excluded them because they exist on the margins of society.”
“The tests were experimental,” Jackson adds. “I’m not shying away from that at all.” But Illinois took a more cautious approach than other jurisdictions, she says, by only approving tests that experts considered low risk, or might help suppress something like HIV.
But why DCFS did not require researchers to appoint independent advocates for each child is still not clear.
Federal law requires children to have independent advocates if the tests are high risk and won’t provide a medical benefit. Officials at Children’s Memorial told the Associated Press that since their tests did not meet that standard, advocates were not needed.
But DCFS seems to have had a tougher standard, and did not press the researchers to follow it. The Associated Press obtained a copy of the agency’s Memorandum of Understanding with researchers, and it explicitly says each child should have his or her own advocate because any approved research on DCFS children is to be categorized as risky.
Yet, Jackson says adhering to federal law was good enough. She is not sure when the memorandum was written, or if it had changed over the years.
She prefers to emphasize the accomplishments.
From 1989 to 1995, 78 Illinois children died of AIDS, but only 31 have died since then. Without the studies, “we feel there would have been many more child deaths,” Jackson says.
Harris says he won’t pass final judgment until his office finishes its investigation. He thinks it’s important to find out what happened. A new disease, one that also causes panic and strikes vulnerable populations such as foster children, could crop up in the future, and Harris says it’s important to make the point now that no one, even if they have good intentions, should skirt the law.
“If you let people get away with stuff they will keep getting away with it.”
Brian J. Rogal is a Chicago writer.
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