We healthy volunteers, who offer our living flesh to drug makers so that they can make billions and billions of dollars and yet not make drug therapies available to us at a price we can possibly afford, are just a few hundred thousand bio-sluts. I am a semi-retired lab rat, since now I am over the age of 45 and no longer seem scientifically sexy enough to qualify for most Phase I studies. During my “professional” tenure, I did scores of these studies, mostly in Philadelphia. I came out of this occupation without scars, except of course on the middle of my arms, where that big old vein is –the vein that brings in all the money.
In ’96 I began a zine project called Guinea Pig Zero, which I created as a forum for us all, with our history, our odd little culture and jargon, and the research scandals that cost some of us our lives or sanity from time to time. Most of the time we are couch potatoes who get stuck with needles, or we snort plastic tubes, or we piss into a jug at our workplace. But every so often, we become unconscious patients, pushed down a hospital corridor by surprised nurses, on our way to the emergency room or the morgue.
Tonight, I want to tell you about a rather disgusting guinea pig scandal that began in London in March 2006. It involved eight healthy young men, two of whom got the placebo. The unlucky six received an infusion of an experimental monoclonal antibody called TGN 1412, the purpose of which had not yet been decided by its researchers. Maybe rheumatoid arthritis, maybe multiple sclerosis, maybe leukemia –they didn’t know yet, even though they were supposed to know. The new class of drugs, now being tried in living men for the first time, was put into these six healthy bodies ten minutes apart. Within about thirty minutes of the first dose, the first guy started complaining of serious back pain, and soon started grabbing his head in agony and calling to the doctors for help. And the band played on. Dosing continued until all six had in their bodies what was obviously a poison.
These six poor men were experiencing a cytokine storm. It led to another medical problem called “multiple organ failure.” You know what this means, don’t you? They were dying. Their immune systems were supposed to have been sort of tweaked, but instead their immune systems went to war against their own bodies –“kicked into overdrive,” the papers said.
The consent form that was provided to the guinea pigs forgot to mention the novelty of this totally new class of drug, and the protocol that was submitted to the British government didn’t happen to mention any earlier research with human blood cells (alongside the monkeys’ blood) in test tubes, which would have examined the question of possible cytokine storms. This would have been an obligatory and essential part of the research process, but evidently it did not take place.
The monkeys who were used in the pre-human phases were dosed in a very slow way, while these first humans were given the drug in a rather fast way, This, among other things, has raised questions for medical scientists. We are all waiting for the answers.
The unfortunate men included Ryan Wilson, 20 years old, an apprentice plumber from North London. Ryan is of Irish descent, as I am. He can’t hope to be a plumber anymore, because after spending several comatose weeks in the hospital, he woke up with many of his fingers and all of his toes in dry gangrene. That means that these extremities had turned to stone, and since that time, all the toes have been amputated and he is waiting for the fingers to fall off. Ryan carries himself through all this with a certain earthy dignity. He is terribly saddened by this disaster, but he refuses to take any antidepressants. He hopes to someday be able to walk normally, which will be more likely if he gets to keep the balls of his feet. Ryan refuses to be defeated by this personal catastrophe, and talks of making the best of his situation. His family is equally brave, and is pushing their formerly healthy young son around in a wheelchair. By the way, Parexel didn’t care to pay for the taxi fare home from the hospital.
We also find Tom Edwards, 21, of Oxford, England. He volunteered for the trial, but dropped out because the 16-page consent form seemed haphazard and he felt suspicious –there was someone at his side all the time he was looking at it. Dear couch potato, please consider doing what Tom Edwards did, when next you read something that you do not understand.
And there is Mohammed El Hady Abdullah, 28, a handsome Egyptian-born bartender bar tender who goes by “Nino,” and who was described in the international press as looking like the Elephant Man, after his fiancée emerged from Northwick Park Hospital, where he lay near death. She later stated that she wished she hadn’t said that. This whole tragedy is often referred to as the “Elephant Man Trial.” Like all the other TGN1412 victims, Nino’s head and neck seemed to be of the same width, and his head was far larger than it had been when his lady last saw him. His skin, like the others, was stretched and purple. The Media has been careless enough to confuse Nino’s swollen description with those of other Parexel victims. One is left to ask, “Will the real Elephant Man please stand up?” This is one sloppy world, and all we guinea pigs live in it.
Placebo was received by Raste Kahn, a 23-year old TV technician, who told the Media: “The test ward turned into a living hell minutes after we were injected. The men went down like dominoes. First they began tearing their shirts off complaining of fever, then some screamed out that their heads felt like they were about to explode. After that they started fainting, vomiting and writhing around in their beds. It was terrifying because I kept expecting it to happen to me at any moment. But I felt fine and didn’t know why. An Asian guy next to me started screaming and his breathing went haywire as though he was having a terrible panic attack. They put an oxygen mask on him but he kept tearing it off, shouting ‘Doctor, doctor, please help me!’ He started convulsing, shouting that he was getting shooting pains in his back.
One doctor was interviewed on British TV, saying that he would have given steroid shots and other remedies to these men, as soon as the symptoms began to appear. BUT it was about five hours before our stricken brothers of London received the slightest remedy for their close call with death.
Two of the formerly healthy subjects have been diagnosed with weird and obscure cancers. All six of them have impaired immune systems, and fear for their health if they should even take a ride on a bus, lest they catch some passing illness.
I would love to see a diagram of the research unit, so as to figure out how loudly the medical staff could hear the screams of the first victims, as they poisoned the last few? Who are these people anyway? Do they have names? British law is far more restrictive of journalists than is US law. Similarly horrible scandals in the US will at least supply the names of the researchers.
The British government has completely exonerated Parexel and made some 22 mealy-mouthed recommendations for future research of this kind. The CEO of Parexel was filmed at Boston, literally running down the hall into the men’s room from a British reporter, as he was asked about this scandal. The assholes who invented the drug have declared bankruptcy, and Parexel is actively recruiting new subjects. Nobody was, nor ever will be prosecuted. The short version goes like this: Those scumbags got away with it.
What we are left with, my fellow couch-potato guinea pigs, is a dream of terror: When you check into your next study, take a nice long nap. Go and watch the football game, and have yourself one of those dry turkey sandwiches that we all know too well. Perhaps when you wake up, maybe you’ll see the smiling physician who turns out to be your murderer. If you should pass through this study with the usual care-free paycheck and wave-of-the-hand, please remember that six guys, who are all just like you, are now crippled and haunted by a study that happened to them.
Healthy guinea pigs, we are only a company of lousy bio-sluts, but we can improve our condition by staying in touch. It could have been me at London, and it could have been any of you.
In Solidarity,
Bob Helms
