Drugs, Disease, Denial
For the last year and a half, Incarnation Children's Center, a small skilled nursing facility in Washington Heights for children with AIDS, has been the target of a concerted attack by HIV denialists, the dangerously deluded people who believe that HIV is not the cause of AIDS and that people with HIV should not receive treatment.
The denialists accused ICC of abusing the foster children who live there as "guinea pigs" for deadly medical experiments, and these charges have elicited interest and some support within the Black community in northern Manhattan, which is acutely aware of both the racist history of American medicine and the routine incompetence and hostility of the Administration of Children's Services (ACS), New York City's troubled foster care agency.
HIV denialists have been around for years. Scientists, AIDS activists, clinicians and service providers ignore them when they can. Every wingnut claim they make-that HIV does not exist, that AIDS does not exist, that HIV medicines are the cause of the disease-has been thoroughly and completely demolished. But the lies spread by the denialists are beginning to have a destructive effect, hampering prevention efforts and obstructing access to treatment for people with HIV, in the U.S. and globally. By selecting ICC as a target, the HIV denialists are cynically exploiting the African-American community's deep and legitimate concerns about medical racism, pharmaceutical profiteering and ACS's abuses of government power in order to spread disinformation about HIV and AIDS in communities of color.
The attacks on Incarnation Children's Center began with a sensationalist stew of lies, partial truths and innuendo cooked up by an AIDS denialist and free-lance writer named Liam Scheff and circulated on the Internet in early 2004. The New York Post picked up the story in March of that year, eliciting a spasm of misinformed grandstanding by a couple of City Council members. Scheff got New York Press to print his story that July [vol. 17, issue 28]. But his claim that children at ICC were being tortured in hideous experiments by a cabal of plotters including the National Institutes of Health (NIH), the Catholic Archdiocese, GlaxoSmithKline, Columbia-Presbyterian Medical Center, and the Administration of Children's Services wasn't taken seriously until the story was rendered by people with British accents on BBC Two in November 2004. Regrettably, the HIV denialists driving this hoax have since been joined by African-American activists affiliated with small groups like the December 12th Movement, whose rage is directed primarily at ACS. They started organizing protests outside ICC, thus outing the residents as children with AIDS and characterizing their home as a "slaughterhouse."
The HIV denialists have also effectively worked the independent media networks. Over the last six months several programs on WBAI, NYC's Pacifica radio station, have repeatedly and thoughtlessly reiterated the charges against ICC and the deadly lie that anti-HIV treatment, not HIV itself, is the cause of AIDS. Last month, the New York City Council's General Welfare Committee convened a hearing showcasing the HIV denialists' claims. Christian right-wing extremists have also joined the call for a criminal investigation of the National Institutes of Health for supporting foster children's inclusion in clinical trials. The Executive Director of the Traditional Values Coalition, Mrs. Andrea Lafferty, parroted the denialists' attack on medicine and ICC when she declared, "Powerless and parentless children ? are being scrutinized by the 'scientists' of the NIH. But using HIV-infected foster children, some as young as infants, for their AIDS experiments is beyond despicable. ? these voiceless little ones have no rights and no one to speak for them when the NIH is in charge."
Creationism and HIV denial have a common enemy in science.
When Incarnation Children's Center 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 antiretrovirals, they were tested on, and approved for, adult populations first, and only then considered for children. Clinical trials are the first point of access to new and effective treatments; in addition, HIV+ children in clinical trials receive the best available medical care.
Children perinatally infected with HIV develop symptoms much more rapidly than adults: almost all HIV+ infants are ill by the time they are three, while adults are commonly symptom-free for a decade or more after infection. Children also do not live long without treatment. Before the advent of antiretroviral medications used in combination therapy, HIV infected newborns had a median survival rate of six months after diagnosis. In the 1980s, HIV+ children lucky enough to live with their birthparents could be enrolled in clinical trials and get both the newest drugs and the best available care. But a 1992 study reported that over 50 percent of the HIV-infected children in New York City lived with relatives or in foster care, and these children could not participate in the trials. That is, more than half of the kids with HIV-and they were overwhelmingly Black and Latino-were denied access to life-saving drugs simply because they were in foster care. That is the story of racial discrimination in health care and the foster care system that needs to be told.
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 they accomplished. Not a single child at ICC died as a result of clinical trials they participated in there. Those kids were not "guinea pigs." They were children with a deadly infection receiving state-of-the-art medical care and drugs already proven effective in adults.
ICC's participation in clinical trials ended in 2002 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 spin even this as sinister: now, Scheff has charged, foster kids with HIV are being given anti-viral medications not just experimentally but as-gasp-routine treatment. That's true. And that's good.
The denialists emphasize the limitations and the side effects of antiretroviral medications; some, ignorant of the history of the epidemic, assert that these treatments are themselves the cause of AIDS. There is, of course, no cure yet for HIV, and the antiretroviral drugs are at best nasty to take and difficult to tolerate. (In his NY Press article last year, Scheff boldly revealed that ICC's Medical Director admitted, "The drugs have a 'significant, lingering, bitter taste.' So they mix the pills or powders in chocolate or strawberry syrup." Perhaps Scheff's next exposé will tell the truth about cherry-flavored NyQuil.)
No one familiar with HIV and AIDS treatment has ever suggested that being on combination therapy is pleasant for anyone, and both immediate allergic reactions and long term side effects can be very serious, and even, in rare cases, fatal. HIV disease sucks, and the drugs so far available for it suck, too. Generally, however, the side effects are greatly outweighed by the benefits of treatment. 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 two 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 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: that's why legally children can neither give nor withhold medical consent. ICC, with its loving, expert and compassionate staff, cared for the children; parents or other guardians signed informed consent forms. The clinical trials-the only way the kids could get the drugs that kept them alive-were closely monitored by the National Institutes of Health, collaborating hospitals, and the Administration of Children's Services. The HIV denialists see a conspiracy where there were in fact multiple levels of oversight.
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 HIV-related illness, drugs, or 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+ kids at Harlem Hospital were stuck there as "boarder babies"-too sick for regular foster care, they had nowhere to live but the hospital. The denialists assert that the Administration of Children's Services as not merely neglectful, but complicit in a "full blown criminal conspiracy" when it placed HIV+ kids in ICC. ACS is always (and often justifiably) an easy target: the agency often abuses its power over parents while failing to protect children. But what ACS did in this instance 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 crime to be prosecuted, but an incredible accomplishment to be celebrated.
Thanks to other clinical trials proving the efficacy of AZT and Nevirapine in preventing perinatal transmission, 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.
It's not hard to understand why some people don't believe in the reality of HIV and AIDS. They may be in genuine psychological denial: they don't want to be infected, and they don't want this terrifying pandemic to decimate their families, their world. Others resist changing the behaviors that put themselves and others at risk of HIV infection, so they persuade themselves it doesn't matter. More broadly, the history of racism in American medicine, the pharmaceutical giants' single-minded pursuit of profit, and the frustration that more than 20 years into the AIDS epidemic there is no cure, have prepared fertile ground for denial and disinformation.
It's more difficult to discern the motives of people who urge others to reject the overwhelming scientific evidence and medical consensus that HIV causes AIDS by destroying the immune system, allowing the opportunistic infections that would otherwise be easily fought off to turn deadly.
A closer look at the denialist who evidently instigated the hoax about ICC explains a lot. Christine Maggiore, one of the most visible HIV denialists, introduced Liam Scheff to the guardian of two children who lived at ICC. Maggiore has built a profitable career by combining a gift for self-promotion with a couple of false-positive HIV test results. The story she tells begins in 1992, when, despite the complete absence of risk factors, a routine HIV antibody test came back inconclusive. The retest was positive, and Maggiore threw herself into the whirlwind life of an AIDS poster girl, "booked for a year's worth of engagements before I'd even finished [a speaker's] training course. I made the audiences, laugh, cry, and scared." When a year or so later her doctor suspected she wasn't really infected with HIV, she "finally found the courage to retest," and in a series of tests received results that were inconclusive, she reports, then positive, negative and positive again.
False-negative HIV tests are extremely rare, while false positives are much more common, though infrequent. This fact and all the other available evidence strongly indicate that Maggiore was never infected with HIV, and she herself emphasizes the term "positive" and avoids saying she is infected or has the virus, allowing others to draw that erroneous conclusion. Most people would be thrilled to learn they were uninfected, but Maggiore was unwilling to give up the spotlight. This HIV pretender twisted her good health and the marginal incidence of false positives into a lucrative new racket-selling HIV denialism and bragging about her good life "without pharmaceutical treatments or fear of AIDS." But of course Maggiore has no "fear of AIDS"-she doesn't have HIV. She has since had two children, now three and seven years old, whom she boasted to Scheff "have never been tested. ? They don't take AIDS drugs. And they're not in the least bit sick." But of course Maggiore didn't want them to be tested: she knows that they are not at risk and that their being uninfected would lead people to question her own status. And of course they don't take "AIDS drugs"-they don't have HIV or AIDS.
Christine Maggiore isn't living proof that HIV doesn't cause AIDS; she's just another lying AIDS profiteer, exploiting the real fears of those who actually are infected with HIV and the real suffering of those living with AIDS to get public attention, sell books and pick up well-paid speaking gigs. This might matter less if she wasn't telling parents and caregivers of children who really are HIV-infected to take the kids off difficult but life-saving antivirals. Maggiore has never had to make agonizing treatment decisions for herself or for her children.
This month, the Centers for Disease Control reported that about 1.1 million people in the United States are living with HIV. (Of these, fully half are African-American.) This is the largest number of infected Americans since the start of the epidemic, reflects the good news that people with HIV are living longer because of antiretroviral therapy and the sad fact that HIV prevention messages are not effective enough, so the virus is continuing to spread. Because HIV denialists actively discourage people with the virus from taking antiretroviral drugs, and because disinformation about HIV allows people to ignore advice about safer sex and clean needles, the rates of both deaths and new infections will rise if their campaign is successful. The communities most at risk-African-Americans, Latinos, and gay men of all ethnicities-will suffer the greatest losses. Not believing in the virus offers no protection from it.
The small clutches of protesters who gather occasionally outside Incarnation Children's Center vow "No More Tuskegee Experiments." But remember: The essence of the Tuskegee atrocity was that poor African-Americans who were known by doctors to have a devastating, usually fatal infection were lied to about their condition and intentionally denied lifesaving medication that was available to others. That is exactly what the denialists are perpetrating right now. Denialism is the new Tuskegee. In Washington Heights, the heroes who fought the government to get treatment to the powerless children of color who were infected, sick and dying were the brave little group at Incarnation Children's Center.