Before reading this review, readers should know that I am one of those directly affected by the thalidomide catastrophe: I was born with severely shortened arms, a missing right eye, and very little residual vision in the left. Therefore, what I am about to say may not be completely impartial.
This is a work that the world’s thalidomide survivors have waited many decades to see: not since the Sunday Times Insight Team’s excellent “Suffer the Children”, has our story been told with such precision and clarity.
Many of us are acutely aware of the wrongs visited upon us, our families and countless others whose children were either miscarried, still born or died within a few hours or days of their birth. But to see this forensic cataloguing of every step, each twist and turn in this macabre tale, sends shivers down my spine. I was unfortunate enough to have witnessed the Rwandan genocide at first hand: every time I watch one of the movies covering that terrible crime, I secretly wish for the outcome to be different, even though I know how the story ends. It’s exactly the same for me with thalidomide.
It is fitting that the man who put together the Sunday Times Insight Team, Sir Harry Evans, has written the foreword for this book. As Sir Harry says :
“The Thalidomide Catastrophe carries conviction by its scientific rigour, its energy in tracking evidence, its restraint in reaching conclusions and the cool clarity of the writing.”
Johnson, Stokes and Arndt could easily have used smoke and mirrors and allowed their readers to draw the conclusion that thalidomide was ‘the last Nazi war crime’. Intellectual rigour prevents this, though they certainly examine the murky world of medical experiments on unwilling or unwitting human subjects. They also delve into the connections - which are numerous - between Germany’s criminal past and the leading figures in the pharmaceutical world who emerged with their reputations almost intact.
The authors also lay to rest some of the untruths that, to this day, are perpetuated by the drug’s developer, Chemie Grünenthal: ‘We received no early reports of adverse side effects’ - lie. ‘Thalidomide was tested according to the scientific standards of the time’ - lie. ‘The records from the testing carried out on the drug were accidentally misplaced when moving from one building to another’ - convenient lie. ‘We withdrew the drug from the market as soon as we heard about incidences of birth defects’ - lie.
The spectacular criminal trial and its collapse are also meticulously documented: in particular, the interference in the judicial process by the federal government of West Germany and the conflict of interest surrounding the legal representation of the defendants are proved beyond doubt. Unquestionably, the government of West Germany was as guilty of denying justice to the thousands damaged by the drug as the executive team at Grünenthal. This is the basis of an ongoing campaign by thalidomide survivors in the European parliament and in Germany itself. Perhaps this excellent work will go some way to persuading decision makers in Brussels and Berlin that it is finally time to admit the wrongs of the past and make a lasting settlement with thalidomide survivors, wherever they happen to be.
Not content with putting together the various and fragmented pieces of the thalidomide survivors’ puzzle, Johnson, Stokes and Arndt look at the drug’s incredible inability to go away and die: it has been marketed to treat complications of leprosy, HIV/AIDS and various cancers, to name but a few. Often, the trail can be traced back - directly or indirectly - to Grünenthal. As the authors point out, in each case:
“Thalidomide is first hailed as a wonder therapy for treatment of some new disease, until gradually the problems of the side effects emerge yet again, and the drug moves on to yet another new disease… The side effects do not change, and they include peripheral neuropathy, heart and circulatory problems, bowel obstructions and - still in the 21st century - birth defects.”
This is a real life “Constant Gardener” story of a big corporation riding roughshod over people who are unsuspecting and who have little or no access to remedial action. When, in 2009, I was introduced to a Brazilian thalidomide baby, I was incandescent with rage that such a thing could be allowed to happen anywhere.
It is not an easy read, it is, however, an essential one.