|
Home > Archive > HIV Aids > June 2005 > NY Press report
You are viewing an archived Text-only version of the thread.
To view this thread in it's original format and/or if you want to reply to
this thread please [click here]
|
|
| GMCarter 2005-06-27, 8:48 am |
| WWW.NYPRESS.COM | JUNE 22, 2005
------------------------------------------------------------------------
JEANNE BERGMAN
NEWS & COLUMNS
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, was the legal guardian of some of the children;
in other cases the 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.
Volume 18, Issue 25
------------------------------------------------------------------------
© 2005 New York Press
| |
| wilyretrovirus 2005-06-27, 8:48 am |
| For some desperately-needed balance to Ms. Bergman's article, please read
the "companion" piece written by Celia Farber. Notice the difference in
tone between the two articles.
http://www.nypress.com/18/25/news&columns/farber.cfm
| |
| PaulKing 2005-06-27, 8:48 am |
| You are so right. Ms Bergman is such an insane fanatic and blatent lier
that I think she must do more harm then good to her intended objectives
(creating a mob like mindless hate in her audience that is directed
against 'AIDS' dissidents).
The fanatical propaganda she tries to pass off as argument and reporting,
seems like a flash back to the Nuremberg Rally (but lacking the skill and
insane conviction of the Nazi spokesmen).
To Ms. Bergman, dissidents are 'life unworthy of life', and given a little
encouragement I have no doubt she would advocate a 'final solution' to the
dissident problem.'
Paul
| |
| wilyretrovirus 2005-06-27, 8:49 am |
| >You are so right. Ms Bergman is such an insane fanatic and blatent lier
that I think she must do more harm then good to her intended objectives
(creating a mob like mindless hate in her audience that is directed
against 'AIDS' dissidents).
Mr. King,
she's doing the "dissidents" (or "rethinkers") at least TWO big favors.
First, her obviously fanatical, blood-lust rhetoric is counterproductive
to her goals. Secondly, she's airing concepts and ideas that the general
public is still incredibly unaware of.
What keeps the public from questioning what their told, is the very fact
that mainstream media all but refuses to acknowledge the existence of
"dissident-rethinker" questions and ideas. Ms. Bergman is doing a great
favor in bringing such ideas out of the fringe. Thanks, Ms. Bergman!
| |
| Gary Stein 2005-06-27, 8:49 am |
| What else would one expect from Celia she is the most rabid denialist in the
US press. She has been all over the map regarding here own HIV status, and
has been shown to be wrong so many times in some many of her articles on the
subject of HIV as to have no credibility left what so ever.
Calling Celia a credible reporter on HIV is the equivalent of calling a
common street criminal an expert on the criminal justice system.
Gary Stein
"wilyretrovirus" <purfling@nospam.yahoo.com> wrote in message
news:4d33c8ace6336d3ba3f3ed81183ba7b6@localhost.talkabouthealthnetwork.com...
> For some desperately-needed balance to Ms. Bergman's article, please read
> the "companion" piece written by Celia Farber. Notice the difference in
> tone between the two articles.
> http://www.nypress.com/18/25/news&columns/farber.cfm
>
| |
| wilyretrovirus 2005-06-27, 8:49 am |
| Yawn. Read the article, Mr. Stein. If you want to read an article with a
rabid tone, read Ms. Bergman's. If you want to read an article that's
nearly dispassionate, read Ms. Farber's.
|
| |
|
|