Clinical Trials and Tribulations
Essence Magazine
February 2007
SPECIAL REPORT
The New York City AIDS Experiment
By Kristal Brent Zook, Photography by Nitin Vadukul
Inside New York City’s Administration for Children’s Services headquarters on
William Street in Manhattan, there is a vaulted room known to staffers as the
Bubble. Hundreds of records are housed there: fat file folders containing vital
information about each of the foster children, most of them African-American and
Latino, ages 6 months and younger, who were enrolled in experimental HIV/AIDS
clinical trials conducted from 1988 to 2001. The records, overflowing with
information about the well-being of the children, fill about 60 lateral file
cabinets.
Dig deeper and it’s quite possible that these files also contain answers to many
other questions that are now being asked — or,
in some cases, shouted angrily — by parents, children’s advocates, community
activists and local politicians: questions about whether the experimental drugs
harmed the children and how, or if, some died as a result of the treatments. The
fact that some of the files were destroyed in a fire, ESSENCE learned, could mean
there is a possibility that many questions may never be answered.
Clinical Trials and Tribulations
In the late 1980’s and early 1990’s, hundreds of children in New York City were
dying of AIDS. A total of 321 newborns were infected with HIV in 1990, the year the
virus soared among infants. Something had to be done. “We fought to get people of
color into clinical trials,” recalls Debra Fraser-Howze, founding president and CEO
of the National Black Leadership Commission on AIDS, the oldest agency addressing
AIDS in Black communities. “At that time they only had gay White men enrolled, and
activists rightfully argued for inclusion,” says Fraser-Howze, who now chairs an
advisory committee investigating the clinical trials. In response, some doctors,
aware that AZT for adults had just been approved, began testing foster children —
mostly from the poor communities of Harlem and the Bronx, where many of the children
were dying — in clinical trials during the early 1990’s.
Not everyone was happy with this arrangement. For years foster parents and
biological family members alleged that some children were being enrolled against
their will and without proper parental permission. Other families claimed they were
bullied into giving their children HIV drugs, and when parents no longer felt it was
safe to continue administering medicine, they stood to lose their children.
“Something seriously went wrong, well-intentioned though it may have been,” said New
York City Council Member Bill Perkins during public hearings held in 2005. “We can’t
duck it. We can’t sugarcoat it.” Sharman Stein, the director of communications for
the Administration for Children’s Services (formerly known as the Bureau of Child
Welfare), says: “This is an issue that took place almost 20 years ago, long before
the current administration was at ACS. We are doing our absolute best to address
these questions.”
The ACS initially said that only 76 children had taken part in the studies. That
number skyrocketed to 465, however, when neglected files were reportedly found in an
agency warehouse. In interviews with ESSENCE, Children’s Services officials
acknowledge the number of children now known to have been involved in trials has
climbed to 526.
A Mother’s Lingering Fears
Speaking in forceful tones and with a heavy West African accent, Regina Musa, a
58-year-old retired home health care aide from the Bronx, sits in a kitchen chair
next to a large swirling fan one August evening as her 13-year-old granddaughter
watches television in the next room. Musa explains her struggle to regain custody of
her HIV-positive grandson, who she says was taken from her home twice and has been
in foster care for the past three years.
Musa says the family’s troubles began when the boy’s mother, Veronica Momodu,
decided to stop giving him HIV treatment. She believed his HIV medications were
causing an allergic reaction that included rashes and chills. The family also
believes that the drugs did permanent damage to the boy’s speech and learning
abilities.
After her daughter stopped giving the boy HIV medicine, Musa says her grandson was
taken away. “They rushed in, asking, ‘Where are the children? Where are the
children?’” she says, recalling that evening back in 1999. Upstairs, Momodu was with
her daughter, then 5, and son, who was about 3 months old. According to Musa,
authorities took the children away while two city officials informed her that she
would hear from Children’s Services. Within two weeks, both mother and grandmother
were served a court summons and charged with medical neglect. Lucky for them, Musa
says, they were able to pull together their limited funds to hire a private
attorney, who eventually got the charges dropped. The boy was brought home within
months.
About three years later, the boy was removed from the family home a second time
when Momodu took him in for a routine checkup at New York University’s Bellevue
Hospital. Lynn Gannett, who once worked in the field of AIDS testing but later
became a vocal critic of the drug trials, testified as a witness in Momodu’s case
and also confirms the family’s story. Both Musa and Gannett say there was a
pediatrician who wanted to enroll the boy in a clinical trial and that, over a
series of visits, the doctor asked Veronica for permission, telling her she would
receive $25 per week. They explain that the doctor became angry when Momodu refused,
and promised her that she would regret her decision. Based on everything they’ve
learned, Musa and Gannett believe the boy was placed in foster care and enrolled in
a clinical trial.
Despite repeated visits to family court, Gannett says that Momodu’s parental rights
were terminated and she was never given an opportunity to explain herself or allowed
access to her son’s medical records. “They never could have gotten away with this
with a middle-class Caucasian family who could have afforded to hire high-powered
attorneys,” says Gannett.
Momodu eventually succumbed to an illness and died in 2004. Musa now has custody of
her granddaughter and fought for — and won — visitation rights with her
grandson. Each week she hails a gypsy cab to a nondescript green building in the
Bronx, where her grandson lives with a foster family. Now a thin boy of 8 with large
eyes and a protruding belly, her grandson seems to be okay, she says, other than the
fact that he is “too skinny” and his speech is delayed. The boy became eligible for
adoption in 2005. Musa claims that no one from Children’s Services even bothered to
tell her the news. Officials there admit they do not actively seek to update
extended family members once a child is ready for adoption.
Even if they had, she admits, she has no money to hire a lawyer to help her get him
back.
Another Knock at the Door
Jacqueline Hoerger, a soft-spoken HIV pediatric nurse, tells another story of loss.
Hoerger, who now lives in Canada, says she worked at incarnation Children’s Center
in Harlem, one of the private agencies taking part in the clinical trials, from 1990
to 1994, where she administered the experimental drugs to foster children. But over
time she began to wonder if the treatments were really working.
In 1998, Hoerger became a foster parent of two HIV-positive sisters, ages 3 and 6.
She followed the prescriptions that the doctors ordered and, for a year and a half,
gave them regular cocktail combinations of HIV drugs. But something wasn’t working.
Despite providing the best foods for the children, sending them to special schools,
and making sure they had plenty of rest, the older girl “was completely hyperactive
and would not eat,” Hoerger says. “Her younger sister overate but would not talk,
move or play.”
After attending a lecture given by a New York physician who questioned the efficacy
of certain HIV/AIDS medications, Hoerger spent months researching and weighing her
options. “I didn’t take it lightly,” she says. “It meant going up against an entire
medical establishment.” She decided to stop administering the medication and, after
about two months, noticed that the changes in the sisters were dramatic. “The older
girl’s appetite increased,” Hoerger recalls. “All of a sudden she loved food and
could taste it and eat and keep it down, and she calmed down and was able to
function at school. She was seen by a psychologist both before and after I stopped
the medication, and the psychologist was amazed by the improvement.”
But, as with Regina Musa, there was a knock at the door. In 2000 both children were
removed from Hoerger’s home by two social workers. On a form, “medication
administration” was the reason given for their removal. Hoerger believes that the
girls were put on medication and placed back into the foster system.
“I went to court to find out if I could get visitation rights, but I couldn’t get
anything,” Hoerger says. She was initially charged with neglect or child abuse, but
says the case against her was dropped in 2001. Even now, talking about the girls
remains painful, she says, pointing out that they should be teenagers today.
When asked to comment on the allegations of these families, ACS Commissioner John
Mattingly says that while he has looked into some of the individual cases that were
featured in media reports, he is not at liberty to discuss cases by name because of
confidentiality requirements. “We haven’t found any children who were removed
because they were not a part of a clinical trial. However, we have found situations
where a foster family stopped giving medicine to a child, and the child became
gravely ill. Based on the judgment of a medical probe, the children were then
removed from the foster family.”
A Doctor Speaks Out
High above the city, in a spacious corner office on Lenox Avenue in Harlem, Stephen
W. Nicholas, M.D., cofounder of the AIDS Pediatric Unit at Harlem Hospital, is
