By Lucas Costello
I am a new Torontonian—young, poor, invincible, chasing the Big City Dream. Mel Lastman will be re-elected later in the year, on promises of tax freezes and never-ending public services. The band I moved here with has already broken up (note to young arts workers: don’t make major life decisions under the influence). I am living in my girlfriend’s mom’s basement (shout out to Cathy), desperate to move downtown from Bathurst and Finch.
Unfortunately, as I am told again and again and again, I have arrived in the city after the patio season hiring rush.
“ARE YOU BETWEEN 18 AND 65 YEARS OF AGE?” shout the “Studies” section ads, cleverly placed right before the Help Wanted section. The most important part jumps out: “You can make between $1000 and $3000.” There are others, but the one that stands out is this one offering the most money. Being a human guinea pig wasn’t something I had ever considered, but $3000 is a lot of money, they probably feed you, and there’s a good chance I will end up in a placebo group, I think. After another day of fruitless job hunting, I call the number and proceed to answer the intake worker’s battery of questions:
“Do you have any problems swallowing pills? Are you OK with needles? How much do you drink? Do you smoke? Are you taking any medications? Do you have any endocrine diseases such as diabetes? Respiratory problems? Psychiatric or psychological? Have you contracted STIs? Food allergies?” Nope. Not a lot. Nope. Nope. This goes on for about 20 minutes.
I am an ideal specimen. Giving this much personal information to a faceless stranger feels terrible. I don’t tell the gatekeeper that, due to cancer’s decimation of my Dad’s side of the family, I’ve been receiving annual stick-and-pokes from inquisitive endocrinologists since I was 13. This would be no different, I reasoned: roll up my sleeves, the tourniquet, the alcohol swab, the poke, the drain, release my hand, apply cotton swab to puncture wound. Only now on an industrial scale.
The options are laid out for me: the longer the trial, the higher the pay. The earliest study begins that month, but I need to be pre-screened. The study appears to be for a relatively innocuous drug, and the compensation is $1800. Four weekends, overnight, meals provided.
At this time clinical research organizations (CROs) are a relatively new industry to Canada. Research that was once under the slow-moving hands of institutions such as universities would soon move rapidly into private, corporate hands. In my mind, the “experiment gone wrong” horror stories are only found in history and comic books.
I pass the pre-screening and after reviewing and signing the trial agreement/waiver, I am accepted in the research trial. I can’t remember the potential side effects listed, but money seems to make one oddly optimistic about potential negative health outcomes. My first Toronto paycheque is only four weekends away, and I’ve also been hired on to the then-newly expanding Zelda’s. Things are looking up. I spend my weekdays at the restaurant for minimum wage. I tell them my weekends are temporarily booked for, Um, another job. Even writing about it now I can’t help but feel a bit of the pang of shame one associates with decisions made in desperation.
The clinic is located in one of many nondescript office plazas common to Toronto’s suburbs. I’ve brought my DiscMan, and Federico Garcia Lorca and Dylan Thomas poetry books to mine for future songs because what doesn’t say “broke artist” better than bleeding for money? I sign in and present my ID to a friendly, but rushed staff member. My backpack is searched for food, liquids, drugs, booze, cameras and any other items not allowed inside the clinical test site. I am given one final debriefing about the drug I am going to take, and my height and weight are taken. The first night, we pee in a cup (drug testing, I assume), give a blood sample, and take our first dose.
Our group is segregated by gender—the men’s sleeping area resembles an army barracks with about 10 bunk beds. The clinic’s common area, where we are to spend our days (no napping allowed), has the biggest television I have ever seen. There is one phone for us to use freely for outgoing calls only (no long distance). Some make small talk. One man lets everyone know that he’s an actor. Later that night there is a commotion and the Actor is removed from the trial (as would be expected, none of us are informed why). He refuses to leave and threatens to sue unless he is given compensation, and the trial manager acquiesces. His compensation will be a point of much debate for the remainder of our trial.
The next four weekends will consist of awkward interactions, reading, playing cards, and watching bad movies. My favourite is the Arnold Schwarzenegger movie End of Days, the perfect accompaniment to being drugged, bled, and fed in rooms with no windows. The harsh fluorescent lights are only ever turned off for our mandatory bedtime. In this building, I will learn firsthand that the CROs, and the pharmaceutical companies that pay them are fuelling their respective multi-million and billion dollar industries with the bodies of low-income wage earners, “professional” test subjects, debt-ridden students, and Canadian newcomers. It is six years before Montreal-based SFBC Anapharm will be responsible for a TB outbreak that infects nine test subjects and 11 clinic staff. Following the TB outbreak, SFBC will also have one of their largest clinic sites ordered closed and destroyed by Miami Dade County in Florida, due to numerous infractions committed during en masse testing on predominantly undocumented Latino men and women.
In the SFBC Anapharm TB case, 15 of the 20 Montreal test subjects were new immigrants to Canada.
Rather than assuaging the participants’ fears about the disease, SFBC Anapharm representatives tried to get all participants to sign waivers absolving them of mistakes and future responsibility in exchange for guarantees of TB treatment. Further reporting from Macleans found that Health Canada was not made aware of the outbreak until a reporter from Bloomberg news contacted them for comment on a story he was writing. Following the TB disaster, SFBC will rebrand as Pharmanet, in 2011 it will be acquired by the private equity-backed inVentiv Health, a billion-dollar global CRO.
Peter (all names changed) is a clinical research veteran. Mustachioed, with a perfectly wind resistant head of hair, Peter participates in the trial because he wants to get a TV “just like the one they have here.” The vets are known to clinic staff, and some even have their preferred lab staff for blood draws. Peter holds court in a loveseat in the corner of the common room, reading the business pages while advising his fellow vets on upcoming clinical trials at other research clinics in the Toronto area. His advice to those trying to get into other trials is to always make sure to alternate arms when moving on to the next clinic. During the trial, one of his veins will become increasingly difficult to draw blood from. When he isn’t reading up on stocks, he paces the room conducting Jane Fonda-esque arm aerobics in the hopes of restoring the income to his collapsed vein.
Arturo and his daughter, recent arrivals from Cuba, are currently in immigration limbo. They both want to work in Canada, but can’t for fear of jeopardizing their immigration status. Feeling like a burden on their friends and family, Arturo signed up for the medical testing, and later recruited his daughter. Before our clinical trial ends, Arturo will take notes from Peter, and between our return visits will successfully be admitted to another study on the opposite side of the GTA. Peter will then receive a referral fee from the other company in exchange for Arturo’s blood. That company, Biovail, will later be purchased by Valeant Pharmaceuticals, Canada’s largest pharmaceutical manufacturer—American-owned but Quebec-operated because of the province’s business-friendly tax policy regarding the trillion dollar pharmaceutical industry. Valeant, alongside wannabe Bond villain Martin Shkreli’s Turing Pharmaceuticals, are currently facing congressional hearings investigating potential price gouging by the pharmaceutical industry.
In another part of the common room, Tania removes her hoop earring to talk to her toddler on the phone. Tania’s child stays with her mother on trial weekends. Like me, she is mixed. I will learn that she has plans to enroll in college, and this money will put her one step closer to being on the other side of the needle. Tania was recruited by Jess, who is very defensive about Tania’s phone time.“She’s talking to her kid, man!” she snaps, if anyone calls for quiet while watching Arnie fight his way through Gabriel Byrne’s satanic horde, or lingers too long waiting to make their own phone call home.
Jess, unlike most of the human test subject veterans, is a young white woman. She is only one of several participants here benefiting from the extra money given to subjects who recruit others for the test. Jess is making additional money by recruiting her friends and neighbours from her Scarborough townhouse complex. She will spend these four weekends budgeting her recruitment fee for car payments and new clothes.
It is a monotonous, regimented life. We keep watch for our colleagues trying to sneak unauthorized naps, waking each other when staff do their rounds. Someone isn’t roused quickly enough and is warned that they will be removed from the study if this happens again. When she leaves, he picks a better position further from the common room entrance and proceeds to nap against the wall. Yo, don’t let her catch me next time.
On our second weekend, one of the veteran women test subjects discretely circulates a makeshift petition demanding more money for our participation. The perception is that the Actor was compensated an unfair amount despite not even completing one night of the study. Peter will not sign it for fear of being blacklisted from future tests. Many more of us see this as a one-shot cash injection (no pun intended), and sign. During meals, the Actor’s early compensation will be loudly speculated upon and taken issue with within earshot of the clinic staff. An impending crisis looming, the study’s manager is called in. He informs us that he will inquire with the trial’s sponsor, and will have answer for us next week. The following week, the manager says that the study’s sponsor agrees to increase our compensation to $2500, which sounds like a lot. In the grand scheme of things, it’s a small amount for a company to pay, rather than risking a partially-completed experiment walking out the door.
The irony of this, of course, is that most of us who have been human guinea pigs will likely never need or be able to afford the drugs being tested on us. Clinical research organizations are a small piece of a trillion-dollar pharmaceutical industry, with most CROs reporting earnings in the tens of millions and a select few reaching the billion-dollar mark. Despite this feast of cash for investors, the number of new drugs brought to market has decreased rapidly every decade since the 1950s. As pointed out by science writer Leigh Phillips, rather than researching and developing new antibiotics, which are greatly needed but produce low financial returns, private equity-backed pharmaceutical companies have their sights set on niche high-return “magic bullets.” This pressure for maximizing profits was identified as a potential culprit for the TB outbreak in Montreal, deaths in clinical trials in Argentina, and near-death experiences in the UK, with bioethicists and journalists raising the alarm about the levels of oversight given to CRO trials globally.
Our remaining time at the clinic site goes smoothly, the extra $700 appeasing most of us involved. On our final Sunday morning, we line up to sign for our checks in an orderly fashion. Peter is already making plans to pick up his TV. I have several appointments scheduled to see rooms for rent across downtown Toronto. With the extra money, I’m even considering places that were out of my price range. Despite the bruising and tenderness below my elbow crease, I feel lighter. The Petitioner opens her envelope immediately to ensure that the promised amount is in fact there. The clinic staffer who did our initial sign-in is also responsible for our sign-out. She seems more relaxed and happy to be handing us money. When asked, she tells someone this is her last day before her vacation home to Jamaica. She gets into a rhythm—Thank youuu, have a great day, see you again. I go to sign for my cheque, Thank youuu, have a great day, see you again. I flush, thinking she’s maybe mistaken me for somebody else, but the statement feels more like a question.
I smile back. “I hope not.”