Meet the Human Guinea Pigs Who Test Your Meds
Who are the people going through trials of untested drugs? Martyrs for medicine? Students who dropped their entire loans on kegs and mini fridges? I signed up to a clinical trial so I could meet them.
The author during his clinical trial
It makes perfect sense that medications should be tested on humans before they can be sold to humans. If it’s not—if scientists just test on rats, for example—we end up with situations like the thalidomide tragedy, in which a drug intended to help alleviate morning sickness in pregnant women led to approximately 10,000 babies being born with thalidomide-related disabilities. In fact, it was that case—which has been called "one of the darkest episodes in pharmaceutical research history"—that sparked reform in the industry, prompting tougher testing and approval procedures.
But who are the people now going through trials of these untested drugs? Martyrs for medicine? College kids who dropped their student loans on kegs and mini fridges? Psychonauts keen to beat the shit out of their synapses with weird, unapproved chemicals? It was that part of the process—the people putting their health at risk, not the drugs they were testing—that interested me, so I signed up for a trial in the hope of mingling with some dedicated guinea pigs.
The study I signed up for was a Phase 1 trial—i.e., the drug had never been taken by humans before—for a painkiller designed to treat osteoarthritis. If all went according to plan, the drug was supposed to help to ease the pain of the crippling disease, all without any serious side effects. Going in, it was those last two words that worried me; researching clinical trials, it’s hard to not stumble across the horror stories.
In 2006, six healthy men in London took part in a trial for the American pharmaceutical research company Parexel. The tests were a disaster: Participants’ organs failed, their heads swelled, and the worst-hit lost his fingers and toes. Talking to the Sun at the time, 25-year-old participant Nav Modi said, “I felt my head swelling up like an elephant’s. I thought my eyeballs were going to pop out.”
Putting the potential for chemically induced elephantiasis as far out of my mind as I could, I turned up to the hospital and was greeted by a couple of cheery nurses. As they signed me in, a man who I can only assume was a regular cruised down the corridor. “Brian! Back again?” laughed one of the attendants.
One of the mood surveys handed out during the trial
The rest of the first day was pretty uneventful—ECGs, a couple of basic meals, and the first of the mood surveys and suicide-risk rating scales we’d have to complete over the course of the trial, just to ensure the drug we were taking didn’t worsen anyone’s depression.
I was put in a room with five other male patients, all of them of various ages and backgrounds. The first was Anwar, an Italian-Somali man in his mid 30s who seemed like he was constantly on the verge of breaking into manic hysterics, making jokes and grinning even while nurses plunged needles into his arm. This was his seventh trial in the past two years; he explained that his day job as a web designer isn’t enough to finance his passion for travel.
“It’s really easy—when I want to go on holiday I just come down and do one trial, and then go! The most I’ve made was $8,000. That was for 26 days. You could do it three times in a year and make about $6,000, but after that it’s best to stop for a while because it’s not good for your health,” he said convincingly, despite the fact his track record doesn’t exactly prove him to be particularly concerned with his personal well-being.
I asked if he’d experienced any side effects during his 26-day trial. “We lost our taste of hot—like, hot things. When we drank boiling coffee, we couldn’t even feel it!” he chuckled, smiling at the memory of a boiling liquid scalding his tongue, before assuring me that his taste had been back to normal by the time the testing ended.
The author during his trial
He later told me he’d once spent three years in an Italian military jail because he was “out of control” when he was young, before comparing prison to the room we were sitting in. “It’s the same thing—you’re in a small place,” he said. “You just have to practice being indoors. You get used to it.” When I told him I wouldn’t want to be here for 26 days, he laughed and asked me, “So how would you survive in prison?” I told him I wasn’t really planning on going to prison; he laughed again and went back to watching How High on his laptop.
The next participant I spoke to was Paul, a spiritualist in his mid 30s, who was there doing a different trial from the one Anwar and I were on. He told me he was five trials in, and counting. “I don’t broadcast it, because people have a bit of a stigma against it—they find clinical trials a bit funny,” he said. “But I always think, Well, if there weren’t people like me, there wouldn’t be half of the drugs on the market and people would be dying regularly.”
He’s right: Pembrolizumab, a new experimental drug that’s made its way through clinical trials, has been called a “paradigm shift” in the treatment of skin cancer. The early tests have shown a 74 percent survival rate, compared with just 10 percent previously. “I’m a spiritualist, so it’s in my makeup to want to help people,” Paul explained. “My body’s just a body, mate. When I die, I transcend. So, to me, this is just a shell. So if I can help people and get a bit of money out of it, then it’s a double-winner for me.”
Peering out from behind his book—Angel Whisperers: Getting Closer to Your Angels—he told me he was planning a four-week stay in September, which would fund a bunch of spiritual retreats all over the world.
One of the meals served during the trial
Over dinner on the second night I chatted with a couple of guys who’d become friends during the trial: a middle-aged man from Liverpool named Stan and a first-year college student called Tyrone. “The worst side effect I’ve had was for this radioactive medicine—we spent 18 days shitting into a bottle,” said Stan. “You couldn’t flush it down the toilet because it was radioactive. So that was the hardest, because for the first few days nobody could do it—they kept missing the bottle. It was chaos!”
The image of Stan trying to catch his own radioactive shit in a bottle remained seared into my brain as he explained why he’d started putting himself forward for trials around a year ago. “Twelve months ago, I was flat broke—it was a case of needing to keep my head down and get some money coming in,” he told me.
Tyrone had never participated in a trial before. He was easily the youngest there and told me that his parents had strongly objected to his taking part, but that he’d signed up anyway. “The thing with being a student is that you don’t know where the money disappears to, but it does disappear,” he offered as an explanation for why he was there. “I was looking for trials about a year ago, but I’m allergic to penicillin, so I couldn’t do the ones that were available at the time.”
While speaking to Anwar on the fourth day—my last in the facility—he claimed he was in the same center as the Parexel casualties in 2006. “It was really, really serious. I was in a different group, and they sent everybody home,” he said. “When I found out, I was glad to be leaving—it was one of the scariest things I’d ever seen.”
Some of the reading material offered during the trial
If he was telling the truth, the experience couldn't have scared him too much, because here he was again, half-naked in a hospital bed with needles hanging out of his arms.
Whenever I asked the nurses and research assistants about Nav Modi and the disaster trial, they all had similar answers: “A lot has changed since then,” or, “It was a mix-up with the dosage.” Weirdly, I didn’t see anybody else asking the nurses anything—something possibly explained by the fact that most of them had done trials before, or, like Tyrone, their doctors had told them that clinical trials are generally completely fine, as long as you don't mind being cooped up in a hospital bed for days on end.
I felt very ready to leave when my four days were up. Being stuck inside is one thing, but having needles shoved in and out of your forearms on a daily basis—as luxurious as that sounds—is a whole other type of hell.
There were no adverse side effects in my group, so the drug should be on the market relatively soon. And as small a part as I played in that, I'll admit feeling a vague sense of pride for doing my part to make it available commercially. Of course, the money doesn’t hurt, and—as I’d expected—it’s this part of the deal that had attracted everyone I met; even Paul, the cockney spiritualist, was in it for the cash.
Mind you, it would take a very unique type of altruist to let a stranger inject untested substances into his bloodstream for free.
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