My Life As A Medical Test Subject

 

Stan Mahoney tells us what it’s like to be a guinea pig for your main source of income

It feels nice when the editors of a fashionable street press ask you to write a cover story for them. It feels less nice when they specify that the story has to be about your life as a medical test subject.

I mean, seriously. Was I asked about the time I spent running an arts co-op? The time I was sued for publishing a giant vagina in a student newspaper? My collection of dolphin-themed pornography? My soon-to-be-published aphoristic reduction of test cricket?

No? Fair enough. I wouldn’t either.

Jerks.

So, instead, let me tell you about how the life of an artist can be subsidised by periodic injections in the spine. No, really. It’s fine. I want to talk about it. The frightening truth is that medical testing has been my chief source of income for most of my adult life. Perhaps I would do well to get it out in the open. Perhaps someone reading this – some kind-hearted patron of the arts – will take pity and give me a real job – one that isn’t predicated on the sacrifice of bodily fluids.

Sigh.

Pharmaceutical companies are evil (but they don’t want you to die).

I guess the first thing you should know is that the life of a medical test subject isn’t as dangerous as it sounds. Sometimes, if I’ve had a couple, I like to make it sound like an exciting world of electrodes, miraculous cures and “monsterism”. It really isn’t. More often than not, a clinical trial is a kind of formality; usually a way of confirming that a slight variation on an existing formula (say, paracetamol, or a flu vaccine) has pretty much the same boring effect as the original.

The more academic studies investigate even more mundane phenomena, of which the benefit to medical science I can only guess is incremental. I recently participated in a study that investigated whether the combination of morphine and sleep deprivation makes you feel sleepy. Turns out it does.

The point is that medical studies and clinical trials are just that: clinical. Every procedure is heavily monitored and regulated to such a degree that it becomes positively boring for all concerned. Sometimes I wish that I would start sprouting extra limbs, just to break up the boredom. The nurses – bless them – will sometimes make small talk, but it does little to cut through the monotony. “No, I’m not studying at the moment. No, there isn’t much work for a freelance writer. Yes, I have been drinking. Yes, that is a dolphin tattoo.”

What’s more, the red tape that a new drug has to negotiate before it gets into my arm is truly phenomenal. Between hospital ethics boards, insurance companies and academic review panels, the odds are pretty good. As powerful as multinational drug companies are, the mainstream media has always taken a dim view of botched experiments on humans. Remember the Nazis? They performed all sorts of unsafe medical experiments, and now they can’t catch a break. Public relations isn’t really my game, but I’m pretty sure that Nazis are the last people with whom multinational drug companies want to be associated.

Don’t get me wrong, I’m not crazy about Big Pharma. I read Adbusters like any other bearded agitator. I’m onto the whole deal about drug companies manufacturing phantom diseases, or bribing general practitioners with lavish conference junkets, or perpetuating the myth that the only cure for craziness comes in the form of suicidal drugs that dull the spirit and perforate the immune system. And don’t get me started on the evil business of blocking the manufacture of generic HIV medication.

Drug companies are jerks, but it’s for that very reason that they don’t want anything to go wrong. The second either a regulatory body or a media outlet sniffs something dangerous, nobody will think twice about rubbing a multinational company’s nose in it, especially in the light of all the other evil shit they get up to.

On top of this, there’s always the comforting notion that the manufacturer is paying for the study. If a drug company pays another company to conduct a clinical trial, it’s in neither of their interests for me to start sprouting superfluous limbs. And that says nothing of the concerns of the hospital, or the insurance company underwriting the whole thing. See what I’m getting it? Honestly, let the drug companies water down the experiment as much as they like. I’m just happy for the tax-free cheque.

Having said that, sometimes shit does go down.

There are stories. People can get pretty messed up. During a trial of monoclonal antibodies at a London hospital in March 2006, six healthy volunteers suffered multiple organ failure and were admitted to intensive care. No shit. They all survived, mind you.

People die too. Just last year, a seemingly healthy Scottish man died of cardiac arrest during the first phase of an arthritis drug trial. Initial reports were of a fit young body builder suddenly keeling over days after the trial, which was subsequently put on hold.  The company involved went into damage control, until an autopsy revealed that the man had a heart condition that had gone undetected for several years prior to the trial. Convenient, no?

The trouble is that there is no such thing as a perfect control group. There will always be unknown variables, and where there are unknown variables there are calm and collected PR representatives with a remarkable ability to zero in on every unknown variable except the experimental drug produced by their company.

As for South Australia, I haven’t heard of any trials that have resulted in permanent injury or death. The closest incident I can think of involved a commercial study where everybody got a bad case of the trots. I was in that group, and I was regular as clockwork – turns out I had the placebo. Suckers.

The funniest thing about that situation was that it was right in the middle of an outbreak of gastro at The Royal Adelaide Hospital. The only way for he researchers to make sure that it was the drug and not the outbreak causing the squirts was to keep us bedridden in an isolation ward for two days. For our trouble they coughed-up an extra 400 bucks per volunteer.

Yesiree, old Stanley was eating food that week!

(Seriously, does anyone want to read an article about the Indonesian stink badger? How about a brief history of New Zealand politics in the post-Muldoon era? Anyone?)

Journey to the centre of the bell curve.

Sigh. I suppose the next thing you ought to know is that the vast majority of medical test subjects are exactly what you’d expect them to be: morons.During the aforementioned isolation study, my bed was sandwiched between a former member of the National Front and an ex-convict with tattoos on his face. One of them – I can’t remember which – became offended when the researchers refused to tell him who had been given the placebo.

You don’t know real frustration until you’ve had to listen to medical test subjects discuss the concept of a placebo, or mandatory detention, or land rights, or cous-cous, or plasma screen televisions, or feminism,
or the lottery, or Prison Break.

The trouble is, morons aren’t stupid. They tend to gravitate towards the more lucrative commercial studies. It’s the academic studies – often run by post-graduate medical students – that have the best kind of volunteers. They tend to be quiet folk who are either friends with the researchers or medical students themselves. Nice people who don’t watch too much television, or if they do, are courteous enough to mute the advertisements.

Unfortunately, even the academic studies attract morons, especially during a recession. The trick is to be friendly but curt. Do not show any signs of personality, lest you find yourself having to spend 24 hours pretending like you give a shit about rugby league, or Linkin Park. If you establish a reputation for gruff silence, you’ll find yourself left in peace for the duration of the study. Strike the right balance and your insistence on seizing the remote during the snooty Sunday arts show will be met with veiled passive aggression, as opposed to outright bogan hostility.

Now that I think about it, the micro-politics of a clinical research unit could well be an accurate microcosm of real life – if real life were populated with cro-magnon men.

(I used to run an arts magazine that was partially funded by a dead horse. I mean, wouldn’t you rather hear about that? What about a nice article about British sitcoms in the seventies?)

When confronted with the vast stupidity of your fellow guinea pig, it isn’t long before you realise that you are almost always at or below their station in life. From here, a certain sense of melancholy is inevitable. When this happens, it’s important to remember that

You are a unique flower.

I’m not kidding. You’re amazing. You’re a genius. This medical testing gig is just a temporary thing. Hang in there, kiddo.

Even during the shorter studies, there’s almost always a whole lot of waiting around. Waiting for results, waiting for other subjects to show up, waiting for the next blood test. Maybe the hardest thing about being a medical test subject is the creeping feeling that you’re wasting your life.

I make thousands of dollars a year in medical testing, and it’s all tax free. I do okay. In fact, I do so blindingly, outrageously okay that I don’t even need to claim welfare. Between medical tests, sporadic freelance work and my quarterly bone marrow donation, I have enough spare time to read and write and work on all sorts of projects besides. Right now I’m constructing a chess set out of discarded cheese wax, decoupaging a working photocopier with lingerie catalogues  and refining an apocryphal Periodic Table of  Mental Phenomena.

Nevertheless, there is a certain stigma attached to the life of a professional guinea pig. It gets to me sometimes. When I have to carry around a jug of my own piss. When the anaesthetist can’t find a vein. When the other volunteers discuss how they’re going to spend their cheques on plasma screens. When I find myself stealing facecloths and toothpaste from the storeroom. When the guy with tattoos on his face beats me at chess. I find the trick is not to waste your time whilst you’re volunteering. Read, study, write letters, or just stare out the window and gather your thoughts. Try to do all those quiet things that you tell yourself you don’t have time to do in the outside world.

Failing that, try and score a stethoscope while nobody’s looking. Stethoscopes are awesome – I’ve got five!

Stan Mahoney is a freelance writer based in Adelaide. His debut book
The Complete Home for the Def & Other Stories will be available in October.


Top Tips for wasting your life

In Adelaide, the two main commercial researchers are CMAX Clinical Research and the Pain and  Anaesthesia Research Clinic (PARC), both located in the Royal Adelaide Hospital. Flinders University and the University of Adelaide both conduct a great deal of medical research.  Check notice boards for signs that say ‘healthy volunteers wanted’.

If you’re squeamish, avoid gastrointestinal studies. Don’t ask. Some studies don’t allow smokers, or require you to abstain from things like liquor, caffeine or strenuous exercise. This is often because these things can potentially screw up the results, rather than cause any danger to you.

Before most studies, you are required to undergo a drug test. I don’t have enough time to go into the details, except to say that they are notoriously inaccurate. Think green tea, cranberry juice and plenty of plain old water. Don’t be afraid to put off  the screening a day or two if you think that sneaky  spliff you had on Sunday night is still floating  around in your system.

Most studies will exclude you if you’ve participated in another study less than a month or so prior. It’s possible to moonlight (especially if the studies are conducted by different organisations), but I wouldn’t recommend it.

Bring a book and some slippers. If it’s an overnight thing, a laptop and/or a box set of Curb Your Enthusiasm is a must. I once met a girl who brought her own bathrobe. She’s dead now.



Art JOHN ENGELHARDT