These two men make a living by participating in clinical drug trials
Before a drug becomes available on the market, it must undergo rigorous testing and multiple levels of clinical trials to ensure its functionality and safety. Every year, thousands of people in Canada and the U.S. take part in these trials, and may receive financial compensation for doing so.
A new documentary highlights how some volunteers are attempting to earn a living by putting their bodies on the line. Bodies for Rent follows two men who spend their days searching for eligible clinical studies, and shows the lengths they'll go to in order to complete a trial and get paid.
A way to make a 'living'
Participating in a trial for a medical drug still under development involves reporting any side effects. It's a potentially dangerous "job," but for many volunteers, the rewards outweigh the risks.
"I think I've done more than 40 studies," says 55-year-old "Franco," who conceals his real identity with makeup in the documentary. "I was struggling to pay my rent. And I saw an ad at the subway in Toronto, and they said, 'Would you like to make up to $1,200 over a weekend?'"
"I usually make [$30,000] to 40,000 a year. Before, I was making, like, $18,000 working at a factory."
Raighne, an artist living in Minneapolis, was raised by a single mother and grew up on welfare. "I've done about 20 or 30 drug trials," he says in the film. "And nothing makes money like clinical studies."
Trying to get out of debt and manage an unstable business, Raighne sometimes spends days or weeks away from home while participating in a study. "I had a friend describe it as, like, 'drug jail,'" he says. "Because you're trapped for a set amount of time. You're under observation."
From testing on prisoners to testing on the poor
Before the 1970s, most Phase I clinical trials — which look at a drug's safety, determine the safe dosage range and see if there are any side effects — were conducted on prisoners. This allowed researchers to control and monitor every aspect of participants' lives.
"These studies did the most unimaginably horrible things you can think of to prisoners there," says Carl Elliott, a University of Minnesota bioethicist featured in Bodies for Rent and the author of The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No.
"For example, they injected inmates with herpes. They injected them with asbestos. They even tested chemical warfare agents on them."
Public outcry and new reforms eventually made research in prisons much more difficult. "The question was, 'Well, who do we do Phase I trials on now?' We can't do them on prisoners anymore," says Elliott.
"The answer is poor people."
'A financial incentive to lie'
When testing in prisons stopped and financial incentives were introduced, students and people impacted by poverty became more common test subjects. However, the promise of money at the completion of a trial has added complications.
"When I started doing studies, I used to be very honest," says Franco. "I [would] tell all the side effects that I was going through."
But after reporting severe migraines during one study, Franco says he was forced to leave — with less than 20 per cent of the promised payout. He says he was also blocked from doing further studies with that company.
"I [was] being penalized for being honest. So, after that, I kind of learned my lesson and I decided to tone down the side effects," he says.
Raighne says he has also downplayed or avoided reporting side effects in the past to remain in a study.
"If you know that if you report the side effects, they're going to kick you out and you're
not going to get most of your money, you're not going to tell anybody about the side effects," says Elliott.
"Basically, you're building a system where people have a financial incentive to lie."
There are real risks
The process of being accepted into a clinical study can be detrimental to a volunteer's health if they're willing to go to any lengths to participate.
If Franco discovers he weighs too much to be accepted into a study, for example, he'll drink four to five cups of laxative tea in an attempt to cut weight. "If the tea doesn't work — and this is something that I'm not really proud of," says Franco, "you can also do two or three days of meth, methamphetamine."
Once in a study, the risks persist. Franco says that after participating for nearly two months in a study worth around $20,000 to him, he received a call from the clinic saying he had inflammation in his pancreas. The study manager told him he was being removed from the study, and later, the clinic advised him to go to an emergency room immediately.
"I hope it's not permanent. If it's permanent, then I'm gonna be upset," Franco says to the camera in the documentary. "I was supposed to get around $20,000. If I don't get the full amount because I am getting side effects, I think that it's unfair."
In the end, Franco was paid $9,000.
"I remember the first time reading one of these [waivers], and it said something like, 'You could die,' and, like, you know, the company wouldn't be liable," says Raighne.
"Sometimes I say little prayers to myself, where I'm just like, 'Please, God, let me be OK. Let me not die.'"
