Document:What Do We Mean
NOTWITHSTANDING ANY OTHER NOTICE ON THIS PAGE, the material on this page is NOT available under the GNU Free Documentation License; in accordance with Title 17 U.S.C. section 107, it is posted in the manner of bulletin boards in schools and workplaces, to encourage public education and citizen awareness, without profit or payment, for persons and entities engaging in non-profit research and educational activities and purposes only.
"You Bet Your Life"
8 October 2006
In early January, I received a copy of an email that was sent by a lawyer in Minnesota to Professor Peter Duesberg, who among other things is a chemist, and has documented the toxic effects of anti-HIV drugs for many years. Duesberg is best known as the virologist who doesn’t “believe” HIV causes AIDS. The lawyer was seeking his input on a case he was considering taking on, involving a man who’d been injured by nevirapine, which he took as part of a multi-drug cocktail. He’d taken the drug for a week.
I called the lawyer – a partner in the firm JP&Q – and he came to the phone. I explained that I was writing a story about global events set in motion by this drug, and that I lacked a clear understanding of the chemical. I’d never spoken to anybody who had actually taken it, and wanted to check myself against a tendency to exaggerate the drug’s toxicities. I’d gleaned, by that time, that there were numerous warnings from the FDA, CDC, and other regulatory agencies, that nevirapine could be acutely toxic, primarily to the liver, if taken for more than a few days. It seemed to me that the drug’s toxicity was different from other AIDS drugs I’d studied over the years. It was more of a wild card – a drug that could suddenly start to burn like a flame catching a sheer curtain. The disaster stories I’d picked up seemed always to happen within days or at most two weeks of treatment – or not at all. But my story was about nevirapine given in a “single dose,” to women in labor, and to their infants, in the developing world. Is it relevant what toxicity profile neviapine has for longer-term use? I thought about this, and about how to keep the story absolutely fair, to keep it from becoming unduly alarmist.
Jonathan Fishbein, for his part, had steadfastly steered clear of any debates about nevirapine, per se. “My issue is not nevirapine, but the integrity of clinical practice,” he has said repeatedly.
Still, I was disturbed by the profile of the drug – that ticking bomb quality it seemed to have. The attorney spoke slowly, with Midwestern reserve, answering my questions about his client.
As a treatment for his HIV “infection,” (which must be put in quotes so long as things remain as they are, where antibodies, normally a sign of a defeated infection, are taken as being the same as true infection,) the man had been given a three-drug cocktail that included nevirapine. Within seven days, he developed Stevens Johnson Syndrome – causing his skin to redden, blister, and eventually peel.
“His skin actually detached from his body,” he corrected me when I used the word “peel.”
“This is an epidermal toxicity that is worse than a burn. It’s deeper.” he said. “The leading cause of death with SJ is sepsis. You lose the protective layer of your skin so you get all these infections, and eventually organ failure.”
His client had been placed in a third degree burn unit at a local hospital and swathed in a full body suit in an attempt to protect him against organ failure and infection. He nonetheless developed organ failure, and was placed on life support. The mucus membranes of his eyes also disintegrated, and he was blinded. When he was removed from life support, and stabilized, doctors tried to restore his vision. They performed three operations on his eyes. “They were hoping that maybe they could restore enough so that he could at least see shadows,” the shaken to his core lawyer explained.
“They weren’t able to. He’s totally blind.”
I didn’t know what to say. I felt like I was being voyeuristic – seeing and hearing something that was so gruesome, I wanted to pull the curtain back and leave the man alone.
There was a long silence on the phone.
“How is he dealing with this?” I finally asked, wondering, even as I said it, how I could ask something so useless.
“Well,” he said flatly, “He can’t cry, because he has no tear ducts.”
There was another long silence. I finally said, “I don’t want to take up more of your time.”
“That’s OK, I’m snowed in over here. Not going anywhere anytime soon.”
He started asking me about Peter Duesberg. “I’ve been reading his papers, about HIV. I didn’t know there was any controversy that HIV was the cause of AIDS. It’s interesting.”
“Yeah,” I said, “it’s been going on for a long time. A lot of people would say there is no controversy.” I didn’t want to talk about Duesberg at that moment.
“Your client must believe that HIV is deadly,” I said.
“Oh yes,” he said. “He still does. He’s been trying different drugs for years. I think he’s on a new combo now. So tell me... Duesberg and those guys... they’re saying nobody should be on these drugs to begin with, is that right?’
“Yeah, that’s right,” I said. “And the other side says...that the drugs may have side effects but that HIV can’t be left untreated or it will kill you.”
I thought about this man, then, whose name I still don’t know. Having been poisoned to the point where he was shucked from his very skin. Having been on life support, his organs failing, and finally left blind, without even tear ducts to enable him to cry. And still, in his mind, it was HIV that was the greatest threat to his survival. Even now.
I said, “your client doesn’t know about Duesberg and all that, does he? The data that...HIV may be harmless.”
“No,” he said.
“Good,” I said.