The New York City AIDS Experiment By Kristal Brent Zook, Photography by Nitin Vadukul

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 summ

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