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  Barbara testifies

On December 17th, 2010, Wemos presented a new publication called ‘The Globalization of Clinical Trials: Testimonies from Human Subjects’. Read one of these testimonies here below, in which Barbara from Poland narrates about the medical trial her son Marek participated in.

Barbara is a 30-year-old mother of two, currently serving a prison sentence in a Warsaw jail for drug offences. She is separated from her alcoholic husband and her mother is taking care of her two sons as she serves out her term in detention. Having been fired from her last job as a cleaner and receiving no financial contribution from her estranged husband, money is extremely tight for the young family.

To add to her difficulties, Barbara’s eight-year-old son Marek suffers from an attention deficit disorder and requires regular medical assessments. Despite the constant presence of a prison guard and the security cameras, Barbara was willing to share her experiences and explain how she and her son became involved in a clinical trial.

A new drug
‘Actually my son Marek is not really sick, he is very well physically, but he has a sort of behaviour disorder which makes it hard for him to sit still and pay attention. Earlier this year our doctor told us about a new drug which sounded a bit like Prozac. He said that if we agreed to let Marek take part in a trial they would pay me PLN4 200 (approximately 51 Euros). I really needed the money, my husband drank all our money away, so there was nothing left for the boys.

‘On the day of the trial we had to take the bus to a private clinic in Warsaw and discuss the trial with some people that I guessed were doctors. They took some blood samples from Marek and explained that the drug might make him feel sleepy or hungry. I was asked to sign a contract but it was really too long to read it all properly, around 60 pages, and it was written in a style of Polish I couldn’t understand. I could feel that they were in a rush, so I didn’t ask too many questions and anyway, they said the contract was more concerned with payment they would make to me for taking part.

Only temporary benefits
‘After about five weeks on the trial, there was a big change in Marek, he was calmer and sleeping much better. I was much happier and life was easier for all of us. However a short time later, my doctor told me that the trial was finished and that the new drug would no longer be given to Marek. He explained that the contract I had signed clearly stated that the trial would only be for a certain period of time, and after that, the drug would be withdrawn.

Panic
‘I was angry and panicked. How was I supposed to pay for this kind of drug once it came onto the market? I couldn’t even pay for my mother to take care of the boys, so how could I pay for their medicines? I started shouting at the doctor, feeling angry at myself for not realising all the facts. I should have paid more attention, and I should have understood what I was signing. That’s true. But then again, that contract was impossible. Nobody could understand it without help, and if those people in that office wouldn’t help me, who would?

‘I can’t believe I signed my son up for this trial without really understanding what I was agreeing to. I was blind. I realise now that people taking part in clinical trials should have the right to ask questions and be spoken to like human beings, not just guinea pigs.’
 

 

 


 

 

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Call for Ethical Clinical Trials
in Developing Countries

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