Liam Scheff - Writer and Journalist on Politics, History, Race, Class and Culture.
In 2004, I broke open the NIH clinical trial scandal - government researchers testing New York City orphans with combinations of toxic, speculative drugs. My research was used as the basis for the 2004 BBC film "Guinea Pig Kids."
I've been published in city weeklies in New York, Los Angeles and Boston, in the book "Tutto In Ventita" (NewWorlds Media - Italy, 2005), and in other print and web journals.
Too much at once, like the rest of you.
Liam Scheff at GNN
Just when you thought that those poor folks at the NIH and Columbia University could find no one to stick up for them for using orphans in clinical trials….Here Comes The New York Times!
So, Are Columbia University and the NIH the good cops for offering AZT to orphans through no-chewing-required tubes?
Or, am I the bad cop for blowing the whistle on forced-surgery on orphans as part of AZT and Nevirapine Trials?
Read on and see….
Once you’ve figured it out, feel free to write me at firstname.lastname@example.org
and/or write the New York Times, for making us all feel better about not worrying about it:
In response to NY Times article on ICC
Thanks for covering the Incarnation Children’s Center story.
You might have showed a little bias in your reporting, however.
If I didn’t know better, I’d say from reading what you wrote that I, Liam Scheff, independent journalist, somehow managed to get everyone who covered the story – the Alliance for Human Resource Protection, the New York Post, the UK Observer, the Associated Press and the BBC – all to dispense with their fact-checking and research departments and take my ‘word’ for what I discovered at ICC.
That’s quite a remarkable story.
I’m sure you’ll stick to it, but it’s far from true.
Your piece claimed that I presented no ‘official evidence’ in my reporting on Incarnation Children’s Center. In fact, I’ve presented piles of official evidence – NIH clinical trial documents, drug manufacturer’s package inserts and warning labels, multiple citations from the Physician’s Desk Reference, NIH and FDA policy papers on the use of wards of the state – to name a few.
You wrote that I made claims in my article about the death of two children at ICC. I was reporting from sources, one of whom I made available to the New York Times reporters after they interviewed me. I stand by that claim, and those sources.
You generously quoted Dr. Stephen Nicholas on the helpful nature of AZT in preventing mother-to-child transmission of AZT. You didn’t, however, bother to quote the medical literature.
There are several studies on AZT and transmission. The NIH study Nicholas quoted (ACTG 076) is the only one with a significantly favorable outcome. Other mainstream studies on AZT rate it similiar to or worse than placebo or no treatment regarding maternal HIV transmission (for a list of citations on AZT see http://www.aras.ab.ca/azt.html ).
You also omitted reporting on the consistent downgrading of AZT (also called Zidovudine) in the medical literature – from “life-saving AIDS drug” to a drug which actually increases the rate of disease progression and death in children born to mothers who were given AZT. (see below)
There are so many contraditions in the medical literature regarding AZT and other AIDS drugs, you have to work hard to ignore them.
Finally, you did not mention that I interviewed the medical director of ICC Dr. Catherine Painter, who told me, in no uncertain terms, how the medication regimen would be enforced if a child was unable to swallow pills which tend to cause abdominal distress (vomiting and diarrhea). The method, I was told, is a surgery to implant a gastric tube into the abdomen of these children, for the purpose of strict adherence to the drug regimen.
It’s one thing to say that AZT is a life-saving drug and that these orphans have been treated with the highest standard of care. It’s another to print it as fact in the pages of the New York Times, without reporting the significant evidence to the contrary. Instead of digging to the roots of this story, you have instead successfully colored it against further investigation in your pages. And that’s a shame for people who think you really are the paper of record.
Here are some examples of AZT in the med lit
“The probability of developing severe disease at 3 years of life was significantly higher in children born to ZDV+ [Zidovudine, AZT treated] mothers than in those born to ZDV- [no AZT] mothers…The same pattern was observed for severe immune suppression…
Finally, survival probability was lower in children born to ZDV+ [AZT treated] mothers compared with children born to ZDV- [no AZT] mothers. “
Rapid disease progression in HIV-1 perinatally infected children born to mothers receiving zidovudine monotherapy during pregnancy. AIDS. 13(8):927-933, May 28, 1999.
“Children of study women who were prescribed ZDV [Zidovudine, AZT] had increased adjusted odds of any anomaly…[T]he lack of data on potential adverse effects of this therapy is still a concern….
Babies whose mothers had ZDV [AZT] exposure during pregnancy had a greater incidence of major malformations than those whose mothers did not. “
Newschaffer CJ et al. Prenatal Zidovudine Use and Congenital Anomalies in a Medicaid Population. J Acquir Immune Defic Syndr. 2000 Jul 1; 24(3): 249-256.
“The study cohort included 92 HIV-1-infected and 439 uninfected children…Antiretroviral therapy (nonprotease inhibitor) was independently associated with FTT [Failure to Thrive] in our cohort…
ZDV [Zidovudine, AZT], in particular, alters mitochondrial metabolism and may have direct nutritional effects “
Miller TL et al. Maternal and infant factors associated with failure to thrive in children with vertically transmitted Human Immunodeficiency Virus-1 infection: the prospective, P2C2 Human Immunodeficiency Virus Multicenter study. Pediatrics. 2001 Dec; 108(6): 1287-96.