This story is over 5 years old
Drugs

I Signed Up for Paid Clinical Trials and Made Tons of Weird Friends

Meeting the human guinea pigs who take untested drugs for cash.

by Jak Hutchcraft
06 August 2014, 5:00am

The author during his clinical trial

It makes perfect sense that medication should be tested on humans before it can be sold to humans. If it's not – if scientists just trial it 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 drug approval procedures.

But who are the people now trialling these untested drugs? Martyrs for medicine? Students who dropped their entire loans on fresher's week Moet 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 one trial – i.e. the drug had never been taken by humans before – for a painkiller designed to treat osteoarthritis, which affects about a million people every year in the UK. If all goes to plan, the drug will 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.

Considering the news was basically inescapable, you'll probably remember that, in London in 2006, six healthy men took part in a trial for the American pharmaceutical research company Parexel. The tests were a disaster; participants' organs failed, their heads swelled grotesquely 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.

Surely nothing bad could happen, I thought, in this hall of japes?

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 severity 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-thirties 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 didn't pay 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 £4,500. That was for 26 days. You could do it three times in a year and make about £10,000, 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 suggest he's all that concerned with his personal wellbeing.

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 was 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 sat 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 Cockney spiritualist also in his mid-thirties, who was there doing a different trial to the one I and Anwar were on. He told me he was five trials in. "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 to 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 to a couple of guys who'd become friends during the trial: a middle-aged Scouser named Stan and a first-year university 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 I spooned down my curry and he explained why he'd started putting himself forward for trials around a year ago. "Twelve months ago, I was absolutely skint – 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 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 centre 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 can't have scarred 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 most 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 prodded 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, it's hard to deny I wasn't left with a vague sense of pride for doing my bit to get it to market. 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 their bloodstream for free.

Names have been changed to protect the identities of participants.

@JAK_TH

More stories about stuff that makes you better:

Is Ketamine the New Miracle Drug?

Scientists in Wales Have Been Sewing Kittens' Eyes Shut

Medical Weed Growers in Canada Are Ready for a Fight

Tagged:
Drugs
medicine
ethics
hospital
Dangers
clinical trials
Vice Blog
Jak Hutchcraft
human guinea pigs
Parexel
Nav Modi
pharmaceutical trials