Tom de Castella has twice served as a human guinea pig at the north London hospital where six volunteers were taken seriously ill this week. Here he describes life as a ‘lab rat’ in the unit.
I was listening to the radio one afternoon last summer when I heard the advertisement for the Parexel lab. In mellifluous tones, a male announcer called for healthy non-smoking males between the age of 18 and 50 to step forward. There was some slightly mystical ambient music, and a spiel about Parexel’s ethical credentials and registrations with the relevant scientific bodies. You wouldn’t just be a guinea pig, you’d be a “volunteer”, joining up for the purposes of medical science, the man hinted. But my interest was piqued by seven key words: “Volunteers will be paid for their time.”
I was broke. Several trips to Zimbabwe as a freelance journalist – paying my own way – had left a dent in my finances. I also had a large tax bill to pay. And I didn’t think drug trials were anything to be scared of. I had met people who had been “lab rats” before, usually South Africans or Aussies who claimed it was “a piece of piss – you get paid a few grand for sitting around letting people stick needles in you”. I decided to ring Parexel and see what kind of money they were offering. I probably wouldn’t do it, but if I did, it might make an interesting article – “The strange world of the human lab rats”. I never thought that I’d only get round to writing that article in the wake of a trial that left six male volunteers fighting for their lives.
Well, they offered me £1,000 to do a trial, and that seemed pretty good money, so I said yes. I have now done two clinical trials at the Parexel unit in the grounds of Northwick Park Hospital in north-west London. The most recent has only just finished: three weeks ago I was still a patient in the unit, serving out my time on a 12-day Johnson & Johnson diabetes drug trial. So, when the news came through this week, I was shocked to the core. I feel a bond with the guys who are critically ill, a sense of sympathy for them, and also a selfish, elated sense of relief. It could have been me. We were testing a different drug, but it too had only been tested on rats and other animals before it was given to us.
Once you show an interest in a study, you are called to a screening day, where you are told about the drug being tested, have blood and urine samples taken, get weighed, have your blood pressure read and talk to a doctor. The doctor describes what kind of drug is being tested and what the potential side-effects are, in a tone that sounds similar to that of an air hostess announcing, “In the unlikely event of an accident … ” before the in-flight safety demonstration. After my first screening I was hooked up to monitors and dressed in a tangle of wires to measure my heart activity. They told me to leave the wires on and come back in 24 hours. (Since the 7/7 bombs, the unit has had to stop this practice, as having scores of young men walking round the tube with wires poking out of their hoodies no longer seems a good idea.)
Once the results of this monitoring are processed, your GP is called upon to send your medical notes to Parexel. If nothing sinister shows up on your record, you are on the study, and then have to abstain from alcohol, caffeine and, bizarrely, poppy seeds and Seville oranges. They agreed to pay me compensation in the event that something went wrong – although they didn’t say how much exactly. I assumed there were quite rigid laws governing this area, so didn’t worry too much.
The Parexel unit is a strange and private outpost within the sprawling concrete compound that is Northwick Park Hospital. It is basically one long corridor with seven or eight wards running off it, each containing half a dozen beds. There is a common room with newspapers and internet access, and a games room with satellite television, a pool table and PlayStation. My first reaction on entering the ward was to the incredible view you get of London, with Norman Foster’s new Wembley in the foreground and beyond that, through the haze, the spike of the BT Tower. I felt like I was on holiday as I put my bag under the bed.
“Amazing view, isn’t it?” I said to the male nurse as he came in. He agreed absent-mindedly, then asked me to pee in a test tube. I was expecting a motley crew of human guinea pigs, desperados, but most of the young men seemed to be well-educated twentysomethings; many were students or travellers looking for a bit of spending money. Some were older, in their late 30s or 40s: these were the serial drug testers. One Argentinian guy told me that he would come over to Britain for a while, do a few drug trials, then return home a rich man. Around half of the volunteers were foreign.
If there’s anything that unites people in these units, it’s their happy-go-lucky, relaxed view of life. These guys are happy to spend a few days kicking back in hospital, being experimented on so that they can emerge rich enough to enrol at university, buy a laptop or go skiing.
In that first trial I was in for four days, testing out a diabetes drug for Mitsubishi. I didn’t notice any effects; of course, I may have been given a placebo. I only planned to do the one trial. After all, like most volunteers, I was aware of a hypothetical risk – although I saw it as pretty remote. Even so, I reasoned, the cumulative effect of super mini electronic cigarettes doing several trials could not be good for me.
The difficulty is that once you get on the books of a company such as Parexel, the offers keep rolling in via text message – £650 for three days here, £1,000 for a week there, £2,000 for a fortnight there. While there are rules insisting that you take three months off between trials, this still allows you to do two or three a year. And it doesn’t stop you doing them abroad. One older man told me he had been doing them for 15 years across Europe and America.
Anyway, earlier this year, I agreed to do another trial. The Johnson & Johnson trial was split into three periods of four days spread across January and February, and it was, I decided, to be my last contribution to medical science. Like an ex-con on the Costa del Sol, I was coming out of retirement for one last job. The two grand would allow me to pay off my tax bill and move on.
We were told the drug had only been tested on rats; they said the side-effects on the rats had included increased urine volume, decreased faeces, scaling skin, decreased breathing and eye discharge. This struck me as surreal rather than worrying.
The drill was much as before, and no doubt much as it was for these six guys left seriously ill this week. Dosing day is when it all happens. We were woken at six by the nurses, who drew back the curtains with something akin to glee. I was soaked in sweat from the plastic sheets and duvet. An affable South African nurse ambled over, asked for my arm and put in a cannula – a narrow tube – so that blood could be taken throughout the day. I was weighed, had my heart monitored, and told to pee in a bottle. Everyone in the trial – there were around 10 of us involved, in two different wards – had a dosing number, and we were dosed at regular, rigorously observed intervals. I was first to be dosed on my ward.
Once dosing begins, the ward is suddenly full of people moving around at speed; nurses with laptops and research assistants in tow; people one assumes to be doctors; others who appear to be officials from the drug company. Everyone is checking information and inputting data.
The day before, it was all horseplay, flirting with nurses and Carry On jokes – but that all comes to an end once the dosing starts. A Kiwi guy in the bed next to mine went into spasm and fainted when the cannula was put in. For a brief moment there was panic on the unit, with nurses and doctors flying in. He came to and said he was OK: he shouldn’t have been watching the needle go in. A doctor came in 10 minutes later and informed him, quite cheerfully, that his heart had stopped for 25 seconds. We had to remind ourselves that this was all pre-dose – nothing whatsoever to do with the drug we were about to test.
Dosing is your big moment as a volunteer. The men and women in white coats are watching you intently, waiting, inscrutable as the exact minute and second approach. “How do you feel?” they ask. “Good.”
You wonder what’s going to happen as they raise the white pipette and ask you to open your mouth. “We’re going to squeeze this into your gum so you absorb it better. You just need to swallow.”
The nurse looms over you and you feel the squirter against the inside of your mouth and the liquid streaming out. Then you swallow. They’re watching you to check that it all goes down. It tasted a bit like chalk, we all agreed later, although a couple of people were certain they had been given the placebo. Of course, most of this chit-chat was just a way of killing time – none of us could really have known.
For the next eight hours we were kept in bed and monitored for any immediate effects – heart monitored every hour, blood pressure every 30 minutes, lying down and standing up. We had to pee on cue every hour or so. At regular intervals we were given a precisely measured quantity of water to drink.
They gave us lunch in bed. We read the papers and talked about the recent Tonbridge bank raid. No one was worried, only bored. By the end of the day we were fed up, bored and a bit fuzzy-headed. There were no side-effects to be noticed.
Over the days that followed, we were less closely confined. We all got on well. It was a bit like boarding school, I guess, except we were being paid to be there. There was a lot of discussion about other studies we had been on. One guy claimed to have had his heart stopped on a study for £20,000 – then he collapsed into laughter and admitted it was a joke.
A week after my final four-day period at the unit, I returned for a checkup. They took blood, urine and checked my heart. Then they sent me my cheque. As I write, the news of the six men hardly seems to improve. I hope they pull through, for them and for their families. I know just how it works. You assure your girlfriend that everything’s going to be fine – people get tested all the time. You decide who else you need to tell and avoid telling those who would worry. I haven’t told my mother.
Once this is written, I’m going to have to pick up the phone. She, like mothers everywhere, is not going to like it. The events of this week won’t put off the die-hard volunteers – for them, it’ll still be a gamble worth taking. But at least I can assure my mother of one thing: I’ll never take part in a drugs trial again.