Despite the recent media attention it has received, students continue risking their health volunteering to trial new drugs. Toby Green examines whether the cash is worth it
Ryan Wilson was a normal student who just wanted to make a bit of cash. Like so many others, he could have just taken a bar job or work in Tesco stacking shelves. He decided instead to become a volunteer in a drug trial, a lucrative business that can result in thousands of pounds of earnings for as little as a few days in a clinic.
However Ryan enrolled onto the TGN1412 trial at Northwich Park Hospital in London where he was given a dose of a drug designed to lessen arthritis symptons. He is now better known as the ‘The Elephant Man’ thanks to the callous nature of the tabloids after the drug caused his fingers and toes to shrivel. He has been left with the very real possibility of having them amputated and remains in hospital after waking from a three week coma. His career plan to become a plumber after graduating has been destroyed.
The tragedy of the Northwich drug trial is undoubtedly a rare event, and hundreds of similar trials are practised yearly without problems. However the continued media coverage of this case has exposed questions about the morality of offering vast and quick sums of cash to convince people to take potentially dangerous and untested drugs. Students particularly continue to volunteer themselves, wooed by a quick lump sum reward without fully considering the implications.
Mark Westall, a 2nd year Sociology student, was feeling the strain on his wallet after a year and a half at York, so in the Easter holidays he decided to become a human guinea pig. “I’d heard about medical research through my elder sister, a Nottingham University student, whose friend had regularly undertaken tests at the Hammersmith hospital I was going to. She told me that this guy had earned £2,000 for two weeks work so I immediately got the number and registered my details with the hospital.
“The publicity of the ‘elephant man’ came at the worst possible time. I’d registered to be on the trial already at this point and had abandoned the possibility of getting a job over Easter instead. Now I was left with everyone around me asking ‘Did you hear about the guy whose head blown up?’ and ‘Are you still going to do it?’ I always replied with yes and that with every drug in the country going through the same process, the chances of a repeat trial disaster were minimal. I’d be lying if I said the news didn’t unsettle me though.”
“How much accurate information, based on full risk analysis, do volunteers receive? Nobody should be surprised that this disaster happened: even rare events have finite probabilities.”
Mark Westall’s experience is encouraging. “Before I was loosely aware of the risks with medical research, I mean drugs that have never been tested on humans before are always going to have risks. But once I’d registered to be tested for the drug I was sent a 7 page document informing all about the drug, the possible side effects and the whole procedure and rules I would abide to during my 4 night stay.”
Neil Barnes, YUSU Academic and Welfare Officer, stresses the need for students to pay attention to what they are being asked to do and not just be swayed by the cash on offer. “Obviously I can’t tell students whether they should or should not take part in these trials, however they should definitely make sure they read the contract and the fine print very carefully.” Mark admits that although “in hindsight it’s easy to say that I would have done the tests even if I hadn’t needed the money, but if I’m honest I probably wouldn’t have taken the risk if I hadn’t needed to.”
The NUS have recently seen fit to publish a set of guidelines for students thinking of taking part in drug testing. In it they stress that “no payout, coercion or bullying should colour your judgement and payment must never be offered for risk” and want any students who feel a company is not strictly following these rules to report them to their Welfare Officer.
It seems hard to believe that major drug companies wouldn’t adhere to these strict guidelines all the time and that drug trial disasters are rare, unavoidable and necessary. However the evidence suggests otherwise. A BBC investigation published this April discovered that many major corporations have been outsourcing trials to India where it is estimated that by 2010 two millions people in the country will be being experimented on.
Six years ago the drug M4N, produced by an American pharmaceutical company, was injected into cancer patients. Not only had the experimental drug never been properly tested on animals, but many patients were not even aware that they had become test subjects. Dr Narayan Bhattathiri, one of the whistleblowers who exposed the practices, said at the time: “I can only say that what they did is something unbelievable or incomprehensible.
“I couldn’t find any example of such a thing being done, maybe in the last 50 years or so. Maybe something similar could have happened in say concentration camps.”
Even Johnson & Johnson, the second biggest pharmaceutical manufacturer in the world, have been discovered to take advantage of the relaxed laws. The BBC spoke to an Indian man who participated in a trial for the company, whose baby oil is one of their many major products sold here in the UK, who claimed that he “didn’t know that experiments were being carried out on [him].”
“I don’t know a lot about all these things. I am poor and I live in a small hut and I don’t understand many things. The doctors are intelligent. They write the drugs out for me so I have to take them accordingly.”
Thankfully medical laws in England are tighter for these trials, yet it shows that the people who operate these trials shouldn’t automatically be trusted. Ryan Wilson may have been extremely unlucky and the vast majority of these experiments are completed successfully, yet if you are tempted to volunteer, don’t let an empty wallet rule over your health.
Subject 049 – Mark Westall’s experience
When I arrived I was taken to the volunteer’s lounge where I was pleasantly surprised to see a widescreen TV, three computers, a Playstation 2 and shelves of DVD’s, books and games. I couldn’t believe it: I’d be spending my time watching TV and generally being incredibly lazy. It was like being a first year all over again.
Going to the toilet was a somewhat controlled process. I would have to tell a nurse when I needed to go and she would then take me. On the second day we were given the drug. We had to remain lying down for six hours, only getting up if we needed to go to the toilet. Whilst such laziness may sound attractive at first, having to lie down for such long periods of time meant that whenever we stood up we would experience quite severe dizziness, which on one occasion nearly resulted in me fainting.
However this was about as serious as the side effects got and we were left wondering whether to whole thing was too good to be true. As I write now, I have just received a cheque for £700 and I am one very happy man. After reading about the elephant man, I also feel very lucky.
The staff were very friendly, always asking if we were OK or if we needed anything, not that they could give us much. As the trial was for diabetes they had to monitor our sugar levels and thus we could only eat what they wanted us to eat, when they wanted us to eat.
Having the nurses come and call a group of grown men and tell them that its ‘dinner time’ felt pretty strange and it was almost as if we were pets that needed feeding. I became quite friendly with three of the other guys, and although I knew I wouldn’t stay in contact with any of them, we made it more bearable for ourselves. Going four whole days without talking to anyone else would’ve driven me mad.
Medical testing not for you? The alternative careers guide
1. Become a stripper
Due to the lack of suitable establishments, you may have to commute to Leeds if you want to earn some money this way. Apparently students there have been doing it for years, and you can earn £500 for two nights’ work. An added bonus is if you tell your dad this is your only option, he may just reach for his cheque book…
2. Working at McDonalds
On second thoughts, he’ll probably prefer for you to sell your body than find work at your nearest fast food establishment. The downsides: low pay, you’ll always stink of frying and limited ‘coolness’ factor when a ladyfriend asks you about your job. Upsides: Free burgers should ease the stress on your wallet, yet, as Morgan Spurlock discovered, it may be better to stick to their salads.
3. Merchant banking
Well, Deloitte and Price Waterhouse Cooper are always hanging around campus so they must be pretty desperate? Perfect if you would like to earn a lot (and I mean a lot) of cash and don’t mind working twenty hours a day, yet it depends how much you value your soul.