Saturday, April 23, 2005

Outrage over usage of HIV positive children as Guinea pigs

[ a true HORROR - M. ]

Published: Saturday, 23-Apr-2005

Saying "the Administration for Children's Services (ACS) has perpetrated a 21st century Tuskegee Experiment on nearly 500 New York City children over the course of 15 years," New York State Assemblyman Keith L.T. Wright (D- Central Harlem/West Harlem) today demanded that the Vera Institute of Justice in conjunction with the NYS Office of Children and Family Services conduct a thorough investigation of ACS policy in light of its enrollment HIV-positive children who are in foster care in clinical drug trials during the late 1980s to 2001.
Assemblyman Wright also announced that he has introduced legislation (A. 6217) that would require the commissioner of the Administration of Children's Services to obtain an order of consent from the court before allowing experimental drug testing on children under the care and/or control of the ACS.

"I suppose I should feel some encouragement from the fact that an independent review of Administration policy will be conducted. Any encouragement is immediately dashed, however, when we realize the gravity of the questions that must be answered," Wright said, adding that the questions include:

Who made the decision to administer the drugs?

How old were the children, and where were they from?

Given that this program began in an era when people had yet to fully comprehend the how and why people contracted HIV, were the children made aware of what medications they were taking, and for what they were taking them?

Given that medical science was not nearly advanced at the time this program began, was sound medical science utilized in administration of these drugs?

Were the foster or birth parents made aware, and was permission given?
Wright added that the use of the foster children is particularly galling when one considers that in the late 1980s, that nation was still dealing with significant fear and hysteria when it came to AIDS. "There is no question that drug trials have helped to increase the life expectancy of those living with HIV. The question is whether children in foster care settings, children who obviously have already suffered greatly in their young lives, should be given experimental treatments. I have no problem with consenting adults undergoing these programs, but doing this to children who may not know better, and whose parents might not have been informed is akin to treating them like animals you'd find in a lab -- rats or guinea pigs," Wright concluded.


Mary said...

I hope our neighborhood leaders communicate concerns about this issue with their NJ counterparts, especially near Newark.

I just re-read chapter 51 of Edward Hopper's excellent 1999 book "The River - A Journey to the source of HIV and AIDS".

The historic look at early poli vaccine tests in Congo goes through a lot of scary 'tests' including many aerial spraying weapons tests by the military and disturbing tests on children of women in prison in NJ.

Using children in this way seems against any ethics standards.

Mary said...

Now I have to recind earlier alarm.
Decide for yourself. - Mary

Dear friends,
I'm starting a project to beat back the HIV denialists here in New York, in South Africa and everywhere they spread their lies, attack HIV/AIDS organizations and endanger access to treatment. Please help by posting widely the piece below from this week's Housing Works Update. If you're interested in helping, being a resource, or joining the listserv, contact me at

Jeanne Bergman

Link directly to the piece in the Housing Works Update at:

Denial = Death: Defend Incarnation Children's Center and Access to HIV Treatment
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:

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'at' to get involved in fighting back against the HIV denialists.