The "Pharmacademy"
By Michelle Julien
Robert Helms has kindly offered his website to help launch my new book, Le Monde Ignoré des Testeurs de Médicaments (The Forgotten World of Drug Testing), which is a personal journey into the little known realm of human experimentation. I am hopeful that the book will be translated into English because it refers equally to clinical trials in the UK and the United States.
Books have been written by French scientists and journalists on the subject of human drug testing, but this is the first to be written by a person who actually underwent clinical trials. What also makes this book unique is the inside look at the stresses and strains of life as a test subject. I somehow see myself as the French equivalent of Robert Helms' alter ego, even though we have radically different views on the subject of human experimentation.
My book is by no means the Michelin Guide to the best (or worst) clinical testing centres. Although I often raise the issue of financial compensation (not salary, since test subjects are not employees), I tend to compare it with the "Big Mac index" (coined by The Economist), which I refer to as the "CRO index" (CRO = Contract Research Organisation). Also, I have been very careful when using the term "guinea pig." Whereas a human guinea pig is generally considered to be a victim, not all participants in clinical trials are victims.
Speaking as one who has undergone medical experimentation, I do not feel a victim, but I recognise certain truths, with which other clinical trial participants might not be comfortable. We are not the martyrs, much less the heroes of Science. We are simply foot soldiers in the service of the pharmaceutical industry. Those among us who have taken part in a good number of clinical trials have indeed been transformed into mercenaries, together with the medical investigators conducting the trials.
I was driven to write this book for several reasons. One of them is reflected in an African proverb, which I have included at the end of the book:
"As long as there is no one to tell the lion's story, the glory of the hunt will always belong to the hunter."
Now in the context of clinical trials, replace the word 'lions' with 'test subjects', 'hunt' with 'science' and 'hunter' with 'researcher/investigator.' I have no desire to narrate the story of human experimentation, but my book does try to break the silence on this subject.
Another reason is the frustration at seeing how phase I clinical trials are reported in the mass Media. Clearly, the Media is more interested in shocking, as opposed to educating, the general public: if there are no deaths or serious injuries, then it's not worth reporting. A striking example of this can be seen in the Daily Express (see article in The Guardian UK, "Drugs firm attacks Sunday Express Splash").
But the main reason for writing this book was to speak out on behalf of fellow test subjects, to spare them the humiliation of thinking they have to lie to those around them, out of feelings of guilt or the fear of being judged. Within the European Union, the French are among the very consumers of allopathic drugs, yet French society tends to look down on those who test these drugs, contrary to attitudes in countries like the UK.
Many people believe the myth that France is ahead of the US in terms of limiting the powerful influence of the pharmaceutical industry. That is purely wishful thinking. Another myth concerns the laws enacted in France purportedly to "protect French participants in clinical trials" while, in reality, they serve the interests of the pharmaceutical industry. All Americans should read this book because they would discover some shocking facts. The only significant difference between a French or English test subject by comparison with their American counterpart, is the fact that the former not only test prescription medication, but also have ready access to it when needed, in some cases free of charge. American test subjects, for the most part, do not benefit from this sort of healthcare system, and will probably not have access to the very treatments they tested in clinical trials.
There is so much hypocrisy in society, to the point where even some of the organisations that criticise the pharmaceutical lobby are just as arrogant as the very industry they seek to denounce. They include the likes of Sonia Shah in her book The Body Hunters, as well as the Alliance for Human Research Protection (AHRP). We are not "victims" of the pharmaceutical industry, but rather a laboratory by-product, a need created to satisfy a sick society.
I would like to cite three people who read the book prior to its publication:
"A sobering, behind-the-scenes testimony of medical experiments. In addition to revealing valuable information, it makes a strong case for raising public concerns about the workings of the pharmaceutical industry."
- Thierry Souccar, journalist and science writer
"This courageous testimony should serve as a wake-up call both for the general public and our regulatory authorities."
- André Menache, scientific consultant to Antidote Europe
"As a personal testimony, it is a must-read. The writer painstakingly dissects, analyses and raises fundamental ethical questions. It is a brave and valuable book."
- Richard Poulin, Professor of Sociology, University of Ottawa
I would like to conclude with the last two sentences in the introduction to the book:
"For those who no longer wish to be passive consumers, welcome to the forgotten world of human experimentation! A world that represents 'all gain, no pain' for the recruiters (the medical investigators) and their sponsors (the pharmaceutical laboratories), but also a world of 'no pain, no gain' for the human test subjects."
If you wish to buy a copy of my book in French, please contact me by email: julien.michelle@yahoo.fr
Books have been written by French scientists and journalists on the subject of human drug testing, but this is the first to be written by a person who actually underwent clinical trials. What also makes this book unique is the inside look at the stresses and strains of life as a test subject. I somehow see myself as the French equivalent of Robert Helms' alter ego, even though we have radically different views on the subject of human experimentation.
My book is by no means the Michelin Guide to the best (or worst) clinical testing centres. Although I often raise the issue of financial compensation (not salary, since test subjects are not employees), I tend to compare it with the "Big Mac index" (coined by The Economist), which I refer to as the "CRO index" (CRO = Contract Research Organisation). Also, I have been very careful when using the term "guinea pig." Whereas a human guinea pig is generally considered to be a victim, not all participants in clinical trials are victims.
Speaking as one who has undergone medical experimentation, I do not feel a victim, but I recognise certain truths, with which other clinical trial participants might not be comfortable. We are not the martyrs, much less the heroes of Science. We are simply foot soldiers in the service of the pharmaceutical industry. Those among us who have taken part in a good number of clinical trials have indeed been transformed into mercenaries, together with the medical investigators conducting the trials.
I was driven to write this book for several reasons. One of them is reflected in an African proverb, which I have included at the end of the book:
"As long as there is no one to tell the lion's story, the glory of the hunt will always belong to the hunter."
Now in the context of clinical trials, replace the word 'lions' with 'test subjects', 'hunt' with 'science' and 'hunter' with 'researcher/investigator.' I have no desire to narrate the story of human experimentation, but my book does try to break the silence on this subject.
Another reason is the frustration at seeing how phase I clinical trials are reported in the mass Media. Clearly, the Media is more interested in shocking, as opposed to educating, the general public: if there are no deaths or serious injuries, then it's not worth reporting. A striking example of this can be seen in the Daily Express (see article in The Guardian UK, "Drugs firm attacks Sunday Express Splash").
But the main reason for writing this book was to speak out on behalf of fellow test subjects, to spare them the humiliation of thinking they have to lie to those around them, out of feelings of guilt or the fear of being judged. Within the European Union, the French are among the very consumers of allopathic drugs, yet French society tends to look down on those who test these drugs, contrary to attitudes in countries like the UK.
Many people believe the myth that France is ahead of the US in terms of limiting the powerful influence of the pharmaceutical industry. That is purely wishful thinking. Another myth concerns the laws enacted in France purportedly to "protect French participants in clinical trials" while, in reality, they serve the interests of the pharmaceutical industry. All Americans should read this book because they would discover some shocking facts. The only significant difference between a French or English test subject by comparison with their American counterpart, is the fact that the former not only test prescription medication, but also have ready access to it when needed, in some cases free of charge. American test subjects, for the most part, do not benefit from this sort of healthcare system, and will probably not have access to the very treatments they tested in clinical trials.
There is so much hypocrisy in society, to the point where even some of the organisations that criticise the pharmaceutical lobby are just as arrogant as the very industry they seek to denounce. They include the likes of Sonia Shah in her book The Body Hunters, as well as the Alliance for Human Research Protection (AHRP). We are not "victims" of the pharmaceutical industry, but rather a laboratory by-product, a need created to satisfy a sick society.
I would like to cite three people who read the book prior to its publication:
"A sobering, behind-the-scenes testimony of medical experiments. In addition to revealing valuable information, it makes a strong case for raising public concerns about the workings of the pharmaceutical industry."
- Thierry Souccar, journalist and science writer
"This courageous testimony should serve as a wake-up call both for the general public and our regulatory authorities."
- André Menache, scientific consultant to Antidote Europe
"As a personal testimony, it is a must-read. The writer painstakingly dissects, analyses and raises fundamental ethical questions. It is a brave and valuable book."
- Richard Poulin, Professor of Sociology, University of Ottawa
I would like to conclude with the last two sentences in the introduction to the book:
"For those who no longer wish to be passive consumers, welcome to the forgotten world of human experimentation! A world that represents 'all gain, no pain' for the recruiters (the medical investigators) and their sponsors (the pharmaceutical laboratories), but also a world of 'no pain, no gain' for the human test subjects."
If you wish to buy a copy of my book in French, please contact me by email: julien.michelle@yahoo.fr