Denial Equals Death: Let's Defend Incarnation Children's Center from
HIV Denialists

26 May 2005
By Jeanne Bergman, PhD

Incarnation: Under attack. Editor's Note: Earlier this month, the
Associated Press reported
<http://www.post-gazette.com/pg/05125/499374.stm>  that experimental
anti-HIV drugs had been tested on foster children nationwide over the
past two decades, often without the children having the protection of
an
independent advocate, which was required by some states. Those charges
are now being investigated at the federal level. But in New York City,
the investigation goes back to early 2004, when the New York Post
reported such trials having taken place at Incarnation Children's
Center (ICC) (see Children's Services Agency Asks Research Firm to
Investigate Research Involving HIV-Positive Foster Children
<http://www.thebody.com/kaiser/2005/apr25_05/fostercare_hiv.html>  in
thebody.com, 4/25/05.) Those trials are now being investigated by the
City Council and by an independent group, the Vera Institute of
Justice, to see if the children's rights were violated.

Jeanne Bergman, PhD, a former editor of Housing Works AIDS Issues
Update, feels strongly that they were not-and that ICC has been
unfairly demonized by those who deny that HIV causes AIDS (and that
antiretrovirals can save lives). While AIDS Issues Update withholds
comment on the specifics of the ICC case pending the findings of the
Vera Institute, it wishes to showcase Bergman's strong voice against
the dangers of HIV denialism of any sort. The rights of patients
involved in HIV research must be rigorously protected-especially if
those patients are, like foster children or prisoners, among society's
most vulnerable members. But those who deny decades of science
demonstrating that HIV causes AIDS-or who fail to portray a balance
between the risks of antiretroviral medications and their proven
effectiveness at preventing progression to AIDS and death-pose a
threat to organizations like Housing Works that advocate for equal
access to treatment and care for everyone living with HIV/AIDS
worldwide. We cannot let HIV denialists hijack the public conversation
about cases like ICC's. We must step forward boldly to offset their
biases and distortions.

For the last year and a half, a small skilled nursing facility in
Washington Heights for children with AIDS called Incarnation
Children's Center (ICC) has been under increasingly intense attack by
HIV denialists, a dangerously deluded group of people who believe that
HIV is not the cause of AIDS, and that people with HIV should not be
given antiretroviral drugs. On May 5, the New York City Council
General Welfare Committee held a bizarre hearing endorsing the HIV
denialists' claims. It's possible that the outcome will be that
children with AIDS in foster care will again be denied access to state
of the art care.

HIV denialists have been around for years, annoying activists,
clinicians and service providers who regard them as crackpots whose
antics shouldn't be allowed to distract us from our urgent work. We
can no longer ignore them. In a world increasingly hostile to science,
the lies spread by the denialists are having an effect, impeding
access to HIV medication to people of color in U.S. cities and in
Africa. We must respond. We must defend HIV/AIDS prevention workers
and clinical and service providers like ICC. We must fight back with
the truth: HIV causes AIDS. Antiretroviral treatments save lives.

The attacks on ICC began with a sensationalist story written by Liam
Scheff, a self-described "AIDS dissent journalist," and circulated on
the Internet. The New York Post picked up the story in March 2004,
eliciting a spasm of misinformed grandstanding from a few City Council
members. But the claims that children at ICC were "guinea pigs" who
were being "tortured" in hideous medical experiments by a cabal of
plotters including the National Institutes of Health (NIH), the
Catholic Archdiocese, GlaxoSmithKline, Columbia University and the
city's Administration of Children's Services (ACS) weren't taken too
seriously until the BBC2 aired a version of the story in November
2004. We must fight back with the truth: HIV causes AIDS.
Antiretroviral treatments save lives.Regrettably, the HIV denialists
have since been joined by African-American nationalists affiliated
with the December 12th Movement. Their rage is directed primarily at
ACS, which placed the children at ICC. They have started organizing
protests outside ICC, thus outing the residents as children with AIDS.
The HIV denialists have successfully worked the independent media
network; over the last six months, WBAI, NYC's Pacifica radio station,
and "Democracy Now!" have repeatedly and uncritically reiterated the
charges against ICC. They've been joined by the extremist right: on
May 6, theTraditional Values Coalition urged U.S. attorney general and
torture theorist Alberto Gonzales to launch a criminal investigation
into the NIH for supporting foster children's inclusion in clinical
trials, "as well as [into] anyone who looked the other way or financed
these atrocities."

What is the truth? When ICC was founded in 1988, children with
HIV/AIDS who were in foster care in New York City were not allowed to
participate in clinical trials. As new medications were
developed-including those for AIDS-defining opportunistic infections
and, eventually, antiretroviral drugs-they were tested on, and
approved for, adult populations first, and only then considered for
children. HIV-positive children lucky enough to live with their
birthparents could be enrolled in clinical trials and get the best
available care. But those in the foster care system, who were
overwhelmingly black and Latino, could not. These children were denied
access to life-saving drugs simply because they were in foster care.

ICC and other advocates for children with HIV successfully fought to
have the policy that discriminated against foster kids changed. Almost
all of the children from the ICC clinical trials period, children who
would otherwise have died, are alive and well today because of what
ICC and other advocates for children accomplished. Those children were
not "guinea pigs." They were children with a deadly infection
receiving state-of-the-art medical care and life-saving drugs already
proven to be effective in adults.

The denialists emphasize the sometimes serious side effects of
antiretroviral medications. Are these difficult drugs to live with?
Yes, but the side effects are greatly outweighed by the benefits of
treatment. And the children at ICC had the advantage of living in a
structured, supportive setting that ensured that they could adhere to
complex regimens with stringent dietary requirements, and on-site
health care that enabled rapid identification of, and response to, any
side effects.

The HIV denialists say that the young children at ICC could not refuse
the drugs or fight off the "researchers" who gave them their
medications. Should children of three, six or even 12 years get to
decide if they will or will not take their medicine? Of course not,
particularly when irregular dosing may result in multiply
drug-resistant HIV. All responsible parents and caregivers understand
that children can't make crucial life-and-death decisions for
themselves, and the law recognizes this fact too, such that children
can neither give nor withhold medical consent. [1] Columbia University
ran the clinical trials-the only way the kids could get the drugs that
kept them alive. They were closely monitored by the loving, expert and
compassionate staff of ICC, and by the National Institutes of Health
and the ACS. The HIV denialists see a conspiracy where there were in
fact multiple layers of supervision. The HIV denialists see a
conspiracy where there were in fact multiple layers of supervision.The
denialists suggest that there is something evil in the cessation of
the "experiments" at ICC in 2002. Why were the trials "abruptly
halted?" Because, as a result of the successful treatment of children
in the clinical trials, those drugs were approved as safe and
effective for pediatric populations. But the denialists see even this
as sinister: Now foster kids with HIV are being given anti-viral
medications not just experimentally but as routine "treatment," Scheff
charged on WBAI on May 10. That's true. And that's good.

Were the children at ICC stolen from their parents to be used for
experiments? Absolutely not. The parents of many children at ICC had
died from AIDS; others were incapacitated by illness, drugs, and
homelessness and unable to care for very sick children. That's why the
kids were in the foster care system. Until ICC was founded, orphaned
and unparented HIV-positive kids at Harlem Hospital were stuck there
as "boarder babies"; too sick for regular foster care, they had to
live in the hospital. The denialists represent ACS as not merely
neglectful but complicit in a "full-blown criminal conspiracy" when it
placed HIV-positive kids in ICC. ACS is always (and often justifiably)
an easy target. But what ACS did then was, for once, really wonderful:
It put kids with HIV/AIDS who had no other home into a cozy,
first-rate specialized care facility where they had access to
state-of-the-art combination anti-viral therapy under the expert
supervision of a brilliant and compassionate staff. That's not a
scandal to be investigated; it's an incredible accomplishment to be
celebrated.

Thanks to other clinical trials proving the efficacy of nevirapine in
preventing perinatal transmission of HIV, and in particular to the
amazing community education and care provided to pregnant women by
Harlem Hospital, the incidence of perinatal HIV transmission in
Washington Heights and Harlem has fallen dramatically. Almost no new
HIV-infected babies are born in northern Manhattan now, and the AIDS
babies of ICC are nearing adulthood.

ICC is but one example of the reach of the HIV denialists. On the same
day as the City Council hearing against ICC earlier this month, South
Africa's Health Minister Manto Tshabalala-Msimang sang the praises of
lemon, garlic and beet root as treatments for people with HIV/AIDS and
said her government would not be pressured into meeting antiretroviral
treatment targets set by the U.N. The next day, the Matthias Rath
Foundation, headed by a German vitamin magnate, ran full-page ads in
the New York Times and International Herald Tribune claiming that
antiretroviral drugs are toxic and AIDS should be treated with
vitamins.

We need to turn around this tide of misinformation. The protesters
outside Incarnation Children's Center are vowing "No more Tuskegee
Experiments." We need to remind everyone that the essence of the
Tuskegee atrocity was that poor people of color known by doctors to
have a devastating, probably fatal infection were lied to and denied
lifesaving medication that was available to others. That is precisely
what the HIV denialists are doing in Washington Heights and in South
Africa. Let's expose their lies as we continue the struggle for HIV
prevention and treatment.

1. (For a well-informed and rational discussion of the complexities of
treating HIV+ children and delivery and dosage issues, see Emily Bass'
article in HIV-Plus at:
http://www.aidsinfonyc.org/hivplus/issue5/kids/treat.html.

Jeanne Bergman is an AIDS and human rights activist and the original
editor and writer of the Housing Works Weekly AIDS Issues Update
(1995-98). Contact her at HIVkills@earthlink.net to get involved in
fighting back against the HIV denialists.