New York, NY —
In the 1980s and ‘90s, at the height of the AIDS epidemic, New York City enrolled foster children in experimental drug trials -- at times, without the permission of parents. The issue emerged five years ago, provoking a storm of controversy, including allegations that black and Latino children were being taken from parents and used as research ‘Guinea pigs.’ A new report obtained by WNYC says that the city, foster child agencies, and hospitals behaved largely in good faith -- but also that they were sloppy in how they handled the delicate balance between getting children necessary medical care . . . and safeguarding their rights. Reporter Fred Mogul has more.
REPORTER: As AIDS spread through her community, Debra Fraser-Howze frequently visited Harlem Hospital as a volunteer. The long-time activist and advocate often comforted infants who were abandoned there.
FRASER-HOWZE: These were children who were left in hospitals, very often by their parents who found out they had AIDS by the birth of their children and decided the best and safest place for these children was to leave them in hospitals.
REPORTER: It was a time when the only medications were experimental. Fraser-Howze was concerned that gay men who were relatively educated and well-off were getting into drug trials, while relatively poor blacks and Latinos were being excluded.
FRASER-HOWZE: Only adults were in clinical trials, specifically white males. You had a whole group of young people who were HIV positive because, of hemophilia, drug transfusions. There was a number of people fighting to get children into clinical trials
REPORTER: The city knew that involving minority foster children in drug trials needed safeguards. All test subjects must be informed about the benefits and risks of experimental therapies. In the case of children, that means parents. But these children were put in foster care because most of their parents were incapacitated by narcotics use, and some of their parents were dead. The city agency that oversees foster care came up with a set of standards to protect children’s rights. But Tim Ross, a researcher with the Vera Institute for Justice, a private think tank, says that agency didn’t always adhere to its own oversight standards.
ROSS: Even though you had a policy that was clearly worked-through, that policy was not followed in many instances.
REPORTER: In 2004, a BBC documentary and several tabloids alleged that the city had effectively forced children into foster care, because their parents and guardians were unwilling to participate in HIV drug trials. Debra Fraser-Howze:
FRASER-HOWZE: These children were majority African-American and Latino. African-Americans have a history of experimentation in this country, and I could not in all good conscience tell the community that they should not have some level of healthy paranoia about children being in clinical trials.
REPORTER: City, state and federal legislators asked the Administration for Childrens Services to explain what happened. ACS said it was trying to figure that out – and eventually hired the Vera Institute to investigate. Tim Ross and his staff combed through hundreds of thousands of records over four years and concluded ACS was severely under-staffed in the 1980s and 90s but had tried hard to serve foster children. Still, out of 532 kids in drug trials, as many as one in five didn’t get parental permission. And 80 or so were involved in trials that either weren’t screened by an advisory panel or were screened and rejected. Ross says that the most incendiary charge -- that children were taken away from parents -- was unfounded.
ROSS: We did not find a situation where a child was separated from their family for refusing to participate in a clinical trial.
REPORTER: Albert Einstein College of Medicine was one of the centers where drug trials were developed. Dr. Alan Fleischman, who worked there in the 1980s and 90s, believes he and other clinician-researchers not only helped children get crucial medical care but that they did, in fact, protect these kids' rights.
FLEISCHMAN: We appointed a senior pediatrician, highly respected in the community and knowledgeable about HIV and AIDS, to work as an independent reviewer, talk with foster families, as well as review the circumstances of the individual child.
REPORTER: Vera Institute researchers didn't find any deaths directly caused by the experimental treatments. Twenty-nine percent of these foster children died of AIDS. But that’s better than average: city-wide, 35 percent of all kids with AIDS died. Dr. Fleischman is outraged by comparisons to the infamous Tuskegee experiments, in which government-backed researchers withheld treatment for African-American men with syphilis.
FLEISCHMAN: In fact, this was the exact opposite: African-Americans who in the Tuskegee setting had been discriminated against by not receiving treatment -- here those children were advocated for, and received the treatment and greatly benefited.
REPORTER: Dr. Fleischman is now the medical director of the March of Dimes. He thinks if the Vera Institute's research shows that as many as one in five kids did not have parental consent, it’s because the city kept shoddy records, not because of what actually occurred. ACS Commissioner John Mattingly, while emphasizing how overwhelmed his agency was at this time, admits staff should have monitored children better and kept more thorough records.
MATTINGLY: The fact that those records are not now easily available to us is not right. And we have to make sure that faced with another crisis of this magnitude, we'll have in place a system that will make sure we have those records at that point and we can show what did and didn't happen.
REPORTER: As far as the Vera Institute could determine, the city handed all available records. The New York State Health Department did not. Researchers fault state officials for withholding records in the name of privacy, saying the Health Department’s, quote "refusal to exercise its supervisory authority undermines public confidence in medical research and child welfare services." The Health Department refused to respond to the charges, saying only it “disagreed.” Debra Fraser-Howze, the AIDS activist who has since become an ally of the city’s foster care agency, says federal authorities should investigate the state.
FRASER-HOWZE: I understand this is a legal matter that gives great restrictions on confidentiality around HIV and AIDS, but because this is a historical study, we need to have whatever it takes to get the information that we need to make our information as complete and thorough as possible.
REPORTER: Many states don’t allow foster children to participate in drug trials at all, since parental approval can be difficult or impossible to get. Fraser-Howze thinks that’s too draconian, because it means the next time there’s an epidemic, these kids would be the last to be treated. She says the city has largely reformed how it protects children’s rights, and the new report will further help – but she would like to see ALL the players – federal, state and city officials, researchers, clinicians and hospitals, and foster care agencies – get together and make sure they manage and monitor future drug trials properly – especially for foster children. For WNYC, I’m Fred Mogul.
REPORTER: The city provided all available records, as far as the Vera Institute could determine. The New York State Health Department did not. Researchers fault state officials for withholding records in the name of privacy, saying the Health Department's, quote "refusal to exercise its supervisory authority undermines public confidence in medical research and child welfare services." The Health Department refused to respond to the charges, saying only it "disagreed." Debra Fraser-Howze, the AIDS activist who has since become an ally of the city's foster care agency, says federal authorities should get involved.
FRASER-HOWZE: I believe that this is a national issue, requiring a national response. We're hoping that there's an outreach and those kinds of things will change. We should go forward and use whatever means necessary to get everyone to comply, to give us this information.
REPORTER: Many states don't allow foster children to participate in drug trials at all, since parental approval can be difficult or impossible to get. Fraser-Howze thinks that's too draconian, because it means the next time there's an epidemic, these kids would be the last to be treated. She believes the city has largely reformed how it protects children's rights, and the new report will further help - but she would like to see ALL the players - federal, state and city officials, researchers, clinicians and hospitals, and foster care agencies - get together and make sure they manage and monitor future drug trials properly - especially for foster children.
WNYC’s Cindy Rodriguez also contributed to this email@example.com
An earlier version of this story said Debra Fraser-Howze supported a federal investigation of the New York State Health Department, which has refused to cooperate with New York City’s efforts to uncover what occurred. She did not speak directly about an investigation. Ms. Fraser-Howze called for “a national response” that included reforming federal bureaucracy and using “whatever means necessary to get everyone to comply.”