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 th.

1. 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

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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.

9. 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,

10. 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."

11. 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

12. 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
wearing a cartoon necktie with smiling children's faces in all
shades of brown and
beige. It was here that Nicholas saw some of the city's earliest
AIDS infected
children. Overwhelmed and unable to provide alternative
housing, the system back
then simply allowed the newborns to stay on at hospitals
indefinitely. After

13. pleading unsuccessfully with state and local agencies to provide
housing for the
children, Nicholas and his partner, Elaine J. Abrams, M.D.,
came up with the idea of
creating New York's first and only AIDS-only pediatric-care
residence. Columbia
University Medical Center, the Catholic Archdiocese, Children's
Services and the New
York State Department of Health all collaborated to establish
Incarnation Children's
Center, which opened its doors to 165 infants in March 1989.
Despite initial criticism from the community, the center
received a well-publicized
visit from Princess Diana, says Nicholas, which helped establish
its credibility.
That same year the Food and Drug Administration approved
AZT for use in HIV positive
adults despite some controversial claims that the drug was
toxic. Based on this
approval, Nicholas forged ahead with clinical trials of AZT
among the babies under
his care.

14. In all, a total of 18 drugs were used during the trials at
Incarnation, which
Nicholas oversaw until 2001. For some children, Nicholas told
ESSENCE, AZT was given
alone. For others the drug ddI (Videx) was administered. And
for a third group both
drugs were given in combination. "We found that the
combination was better than
either one alone," he says. He also calls allegations that AZT is
toxic and
ineffectual, particularly for children, "preposterous. That's like
saying the sky is
really not blue."
By 2000, the number of children under age 20 who died of
AIDS in New York City
that year had dropped to 13, compared with more than 100 in
1990. And for that
reason, Nicholas stands by his decision to use experimental
treatment. Despite
criticism, he says he wouldn't do anything differently.
"What is frustrating is a group of kids that nobody wanted were
given love and

15. treatment and now pediatric AIDS is on the way out," says
Nicholas.
He is currently on assignment administering HIV drugs to
children in the Dominican
Republic. His goal there, he explained before relocating last
July, is "to achieve
the same success that we've achieved here."
The allegations against Children's Services and some 29 private
agencies involved
in the trials --- including Catholic Home Bureau and Incarnation
Children's Center
--- are serious. Among the allegations: a failure on the part of
researchers to
secure consent from legal guardians and biological kin as well
as a failure to
provide independent advocates to properly monitor the children.
There are even frightening questions about whether all the
children enrolled were
truly HIV-positive or sick at the time they were given the
potentially dangerous
drugs and whether the drugs were medically sound, based on
what was known about them

16. at the time. Children's Services confirmed to ESSENCE that
some children who were in
the clinical trials still receive medications that have now been
approved by the FDA
and are no longer experimental.
For some, the investigation calls to mind painful memories of
the Tuskegee syphilis
experiments secretly conducted on African American men from
1932 to 1972. Many also
believe that the little-known foster care clinical trials would
never have been
brought to light if it hadn't been for the work of an independent
investigative
journalist named Liam Scheff, who first published an on line
article about them in
2004. His piece, highly criticized by Children's Services and
doctors involved in
the trials, led to the making of Guinea Pig Kids, a 2004 BBC
documentary that was
widely circulated among New York City community activists
and advocates.
Members of an activist group calling itself the December 12th
Movement were

17. especially vocal after seeing the film, demanding public
hearings and
accountability and rallying outside the home of New York City
Democratic Council
member Bill de Blasio, calling for a formal investigation.
As public outcry has grown, the federal government has also
been forced to
address its role in the matter. In May 2005 the House
Committee on Ways and Means
met to discuss the trials at almost the precise moment that a
stunning national
review by the Associated Press discovered that similar research
had taken place in
at least six other states --- Colorado, Illinois, Louisiana,
Maryland, North
Carolina and Texas --- between 1988 and 2001.
At that same time, officials at the Office for Human Research
Protections (OHRP), a
division of the U.S. Department of Health and Human Services,
turned up the heat
when it wrote a letter to Columbia University Medical Center,
cautioning that it had

18. violated federal regulations in its HIV clinical trials on foster
children. A
contract between Children's Services and the Vera Institute of
justice, a New York
City nonprofit research organization hired to investigate the
allegations, was
signed a month later. But in the months that have passed since
that time, answers
have been slow to come, and the patience of many is wearing
thin.
Many Unanswered Questions
At city council hearings in December 2005, questions put to
Children's Services
went unanswered or were referred to the Vera Institute, the
investigating
organization, which said it would not have definitive answers
until sometime in 2007.
In a quarterly report a Vera official noted that of the children
who entered the
clinical trials, about 17 percent died while in care --- a rate that
investigators

19. characterized as "far higher than typically seen among foster
children who are not
believed to be infected with HIV."
Though officials recognized the medications are powerful and
pose a potential risk,
neither Children's Services nor Vera has been willing to
speculate on actual causes
of death in the children. It is too early to say whether the cause
of death in these
cases was the illnesses themselves or the medications that were
administered, warns
Timothy Ross, Vera's Child Welfare, Health and Justice
program director. Trying to
pinpoint the exact cause is going to be difficult, adds Anne
Lifflander, M.D.,
senior research associate at Vera, since some of the effects of
the treatment are
the same as those of the disease.
Fraser-Howze of the National Black Leadership Commission on
AIDS maintains,
however, that the children should never have been involved in
the beginning phase of

20. the trials. "When you're trying to find out the danger of
something, you don't
generally do it with children."
According to Fraser-Howze, a key issue is that researchers did
not do a close
enough examination of the process of seroconversion, by which
new-born babies may
test positive for HIV antibodies for up to 18 months due to the
lingering presence
of the mother's antibodies, but after which time test results may
show a return to
normal levels. "Were these kids actually HIV-positive?" she
asks. "There's a
possibility that they weren't."
Although Vera was given access to records kept by the roughly
29 private foster
care agencies, it cannot possibly hope to do a complete
investigation without
hospital records, research records and death certificates ---
some of which are
currently being held by attorneys haggling over terms.

21. Meanwhile, the federal investigation is also stifled. The OHRP,
the human services
agency, warned in its letter to Columbia that the university's
institutional review
board did not follow proper procedures in determining how the
children would be
selected, nor did it outline properly its methods for obtaining
parental or guardian
consent. However, the agency's director of the Division of
Compliance Oversight,
Kristina Borror, softened that finding considerably in a phone
interview with
ESSENCE.
The agency was not saying that researchers did not obtain
consent, she noted, but
simply that they did not get sufficient information from their
review board.
Still, in February 2006 the agency concluded its investigation of
Columbia
University Medical Center altogether and quietly closed the
case without ever
deciding either way whether consent was obtained or whether
the children were

22. properly monitored. While these questions, Borror told
ESSENCE, were within the
scope of its investigation, no specific wrongdoing was found.
"How in God's name the OHRP can walk away is beyond me,"
says Fraser-Howze, who's
helping lead the investigation. "It's very possible that we may
not know the whole
truth in the end."
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