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Jodi Dixon: Taking part in clinical trials – what is it like to be a human guinea pig?

21 Feb, 11 | by BMJ

Jodi Dixon

Since the start of September I’ve had over 20 needles in my arms. I’ve had cannulas inserted, numerous ECGs, worn halters for hours and taken three different types of medication. There is nothing medically wrong with me. Am I crazy?

Faced with the prospect of funding an intercalated year in London and already having four years of medical school debt hanging over me, I embarked on an afternoon trawling the internet for new, effective ways to make money fast.

I was starting to see bar maid as my most likely career move while in the “big smoke.” Saddened that I would have to spend my year in the capital working in a bar three to four nights a week, earning money that, realistically, would not go very far towards the cost of “London living” I delved deeper into the array of jobs advertised on the internet.

Soon I came across adverts asking for participants in clinical trials and at this moment discovered that I could make money from not just my skills but also my body.

There are numerous ways to make money from the pharmaceuticals industry’s need to trial drugs on healthy human beings. We are not talking small sums of money either – in student terms, we are talking “fortunes.”‘

For prices ranging from hundreds to thousands of pounds you can sell blood, take new drugs, apply new creams, sleep in research centres with electrodes on your head, even be infected with malaria and flu – all in the name of clinical research.

Medical school had educated me on the existence of clinical trials but it had definitely never occurred to me that I could take part in one. Stepping forward into the world of unlicensed medication was something someone else did – not me.

But I looked at the payment being offered and I wondered what harm could come from inquiring, so in a moment of madness I filled out the internet application form and clicked “submit.”

I promptly received a phone call inviting me to take part in a trial testing a new drug for asthma. The trial was entitled “The effects of inhaled fluticasone furoate and GW642444M on the electrical function of the heart.” Currently people using inhalers for asthma have to use them more than once daily – it is hoped that this drug will mean they only have to use them once a day. The trial is looking to see if the drugs cause any changes on ECG.

The trial involved a screening appointment to check I was healthy and suitable, and then if I was accepted 14 nights and seven full days in their research hospital. These stays are spread into periods of one or two nights over eight weeks. I also have to take two inhalers every morning for a total of four weeks broken down into week long periods and spread over the eight weeks of the trial. The payment was an “eye watering” £2000.

Clinical trials seemed to provide the perfect solution to my financial worries – fantastic pay and nothing to do all day except sit in a hospital, providing the perfect opportunity to get plenty of university work done.

Everyone I have told has reacted the same way, asking why I would risk my health and life and expressing worry that I am taking part. However, I have no intention of committing suicide in the name of science and honestly believe that the perceived risks are greater than the actual risks to my health. My arguments for taking part in a trial include:

  • These drugs have gone through vigorous testing and have to have been approved by an independent research ethics committee (read more).
  • Every drug prescribed in this country has undergone a clinical trial and very rarely to you hear of any problems arising in clinical trials.
  • If you were ill wouldn’t you want to know that the drug being prescribed to you was safe, so why do you expect others to trial it for you if you would not trial it yourself?

In 2006 a clinical trial left two men in a critical condition and four in a serious condition in hospital after a severe reaction to a new anti-inflammatory drug targeting rheumatoid arthritis and leukaemia (read report).

The drug initiated an unsuspected immune response leading to severe swelling and multiorgan dysfunction. The men were admitted to intensive care and suffered septicaemia (read report). All the victims have since recovered but the worst affected volunteer lost his toes and the tips of several fingers. The trial went down in infamy as the “Elephant Man trial,” named because the drug caused the participants faces to swell so much that one’s girlfriend said he looked like the Elephant Man (read report).

A small number of people have died taking part in clinical trials. In 2002, American Elen Roche, 24, died whilst taking part in a clinical trial into acute asthma attacks (read report); this followed the death of 18 year old Jesse Gelsinger, who volunteered for a gene therapy experiment (read report).

These deaths were the only 2 cases of healthy individuals dying as the result of clinical trials that I could find following a thorough search and things going wrong are extremely rare. Richard Ley, spokesman for the Association of the British Pharmaceutical Industry, said (with reference to the elephant man trial): “This is an absolutely exceptional occurrence. I cannot remember anything comparable.”

I decided the risk was negligible and resolved myself to take part. My trial relies on having a fairly relaxed timetable with few contact hours to enable you to have the time, a luxury only afforded to intercalating medical students. However, there are a vast variety of clinical trials going on all over the country, including ones which do not involve hospital admissions.

The purpose of the visits to hospital are mainly for observation in my trial. The staff take blood and ECGs and connect me to a halter to continually monitor my heart. However, most of the time is completely my own providing ample opportunity for studying. I bring my laptop and do my university work – it is completely free from distractions, unlimited internet access is available, and they even prepare me healthy, tasty meals which I don’t have to worry about cooking myself.

The downside of this is the pain of the needles they keep putting in me and the inconvenience of having to take the medication. However I think it will be an interesting experience from the point of view of my future medical practice. I’ve never known what it is like to be poked and prodded in the name of examination, to have blood repeatedly drawn from me, to have wires connected up to me, have to breathe into tubes, to provide urine samples on demand, have cannulas inserted and use an inhaler every morning. However, these are procedures I would inflict on my future patients.

I think it is important as a doctor to understand what your patient goes through and to realise the impact of the tests and treatments the medical profession so routinely administer.

I was terrified as the needle neared my arm, I was expecting to be in agony, what I actually experienced hardly hurt at all. So now I will know I am not lying, when I tell my patients I have requested a blood sample from, “that it won’t be that bad.” When an asthmatic patient returns to me with poorly controlled asthma as a result of not complying with using their inhaler, I will know how “bad” or indeed “not bad” it is to need to use an inhaler each day.

This can only benefit my patients who will who will enjoy the empathy of my own experience.

Furthermore, after this trial, I will have £2000 extra in my bank account and will be able to continue my studies without the added stress of severe financial hardship – a pressure I do not need while trying to study hard.

Like any medication there is a risk of side effects, and I did spend the last week feeling agitated and stressed, a factor I can only attribute to the medication, but generally I have felt fine.

People can be judgmental that you are willing to put your health on the line in the pursuit of money – good health cannot be bought so therefore why are you willing to accept money for it, and you cannot buy back your health if something goes wrong. I understand this view but honestly believe that the health risks are low, I am not selling my health – I am selling the use of my body. With three weeks of the trial remaining I feel fine and remain confident that taking part has been the right decision.

Jodi Dixon is an intercalating medical student.

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  • Rain

    I'm suprised you found locating a suitable trial so easy.

    I'm an unemployed recent graduate, and in my anxiety to get cash in have volunteered for numerous trials across the country. I find very few I can put myself forward for, and of those very few ever require my services. I succesfully managed to donate blood for £7.50 once, that's been it. I've been told that trials are not keen to take on pre-menopausal women above the minimum number legally required, and also they aren't happy to take people on for longer (more financially rewarding) trials until they have an established relationships with you, in case you drop out mid-way through the process.

    I'm really curious how you got this experience?

  • Saurav Adhikari

    You've said it yourself, 'good health cannot be bought so therefore why are you willing to accept money for it, and you cannot buy back your health if something goes wrong'. I would like you to think over this again. You've taken your chances based upon a few internet reports. You cannot rely on everything on the internet. And how do you know if all failed trials and casualties make it to the news? I am sure the pharmaceutical companies will try to hide them as much as possible.
    And one more thing: there are a lot of people in the this world who suffer for so many different reasons. There is virtually nothing we can do about it as individuals. Just because you want to understand how others feel does not mean you start inflicting pain to yourself. I think you can be a good doctor if you can give time to your patients and listen to their problems.
    Since there are only a few weeks remaining in your trial, there is no turning back now. But think over it once again. Is what you have done to yourself justifiable for the amount you received? There are thousands of people in this world who long for a the health that you have sacrificed. I think you should feel blessed and actually use your good health to best serve your patients in the future, rather than 'feel' sick yourself!!

  • http://medicalmediawatch.co.uk Medical Media Watch

    Great post Jodi, I remember the 2006 case you cite; it was enough to put me off volunteering for medical research. That said, it's not totally out the question – with my looks it's the only way I'll get dollar for my body.

    I found your piece particularly interesting as I'm currently doing some work from totally the other end of the spectrum – public perception and the reporting of clinical trials rather than public participation in clinical trials. It's really useful to get your unique perspective on this, cheers.

  • Soorajrk6

    is there any other option other than clinical trials to test a drug whether it is safe and effective. The medical community and the people have to decide whether they want improvement or newer effective drugs. If you do it on animals, the animal activists will a big cry. then you are left with only cell lines. can it give you the safety and efficacy. If all human testing and animal testing is stopped , there will be no new drugs and people will die 50% more with new illnesses than with clinical trials.

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