Trent Stephens
The story of the slipshod science that led to the manufacture of this apparent wonder drug by Chemie Grunenthal, their ruthless marketing, and deliberate cover-up once it was understood that thalidomide could cause permanent nerve damage in adults and terrible malformations of the fetus is clearly described in the first chapters of Dark Remedy. The authors have skilfully resisted the temptation to overstate their case. They have avoided judging the standards of forty years ago by those of today and have let the facts speak for themselves in spare but highly effective prose.
As the early narrative unfolds with the precision of a well-told detective story, the reader is struck by the extremes of the human character. On one hand is the cold, profit-driven, horribly under-qualified Dr. Heinrich Muchter, director of Chemie Grunenthal's research and development group. He is a man who, when presented with convincing evidence of the damage his company's product is causing, actually steps up his marketing efforts.
Contrast his actions with those of a quiet, ethical, well-trained scientist, Dr. Frances Kelsey, then a medical officer with the fledgling Food and Drug Administration. She shows immense courage by staunchly refusing to grant permission for the release of the medication in the United States. She does so despite enormous pressure both from her superiors and the American pharmaceutical company that has millions of thalidomide tablets ready for mass distribution. But for her, a calamity of unprecedented magnitude, a consequence of, " àgigantic marketing plansà" and an "àabsence of scientific disciplineà" would have been inevitable.
The authors in logical sequence next describe the fights of the victims and their families for redress. The David and Goliath struggles of the afflicted against the political establishment and the vast resources of the pharmaceutical industry make for chilling reading.
Moving from the science and the legal consequences of the medication, the authors address the plight of those whose mothers had trustingly taken thalidomide. By focusing attention primarily on Randy Warren, the authors poignantly capture the suffering, desperation and ultimately the unconquerable determination to lead fulfilled lives of the young man and many of his fellow "Thalidomiders", as those afflicted prefer to call themselves.
Having shown the devastation that can be wrought on the individual by poorly conducted science, the authors proceed to direct our attention to how a chance observation made by someone with a receptive mind altered for the better the course of therapeutics.
Years after its banishment, thalidomide is once again under intense scrutiny. Studies of its mode of action have helped to unravel some fundamental questions of cellular biology and how the embryonic limbs develop. Its clinical applications may yet prove beneficial in diseases as disparate as Crohn's inflammatory bowel disease, multiple myelomatosis, a pernicious form of cancer, and pyoderma gangrenosum. This latter affected one of the authors who, with accuracy and humour, describes the ordeal that was finally cured by the very drug that maimed so many.
The final part of the story begins when a dedicated physician, Dr. Jacob Sheskin, is defeated by his inability to alleviate the terminal suffering of a patient with erythema nodosum leprae, the most painful manifestation of leprosy or Hansen's disease. Sheskin made a last-ditch attempt to soothe the man's pain, pain so severe that he had been unable to sleep for weeks. Two tablets of thalidomide were given as a drug of last resort. Not only did the patient sleep, but the pain disappeared and the sores began to heal. From this simple observation came a properly conducted, prospective, randomized, placebo-controlled study. This in the world of clinical research is the absolute standard. Hard science at its most pure. The results were astounding. Ninety-two percent of those treated with the active compound were completely relieved of their symptoms.
At this point the authors, one of whom is a research scientist, ably show how the scientific community works at its best. Observations lead to questions. Questions lead to a thorough evaluation of the body of prior knowledge. That which is gleaned from the libraries is incorporated into the original question so that hypotheses are generated. The hypotheses are tested by way of rigidly controlled experiments. Those that fail the tests, are discarded. Those that pass are cautiously accepted, subjected to further scrutiny and if confirmed are added to the body of knowledge from which the next generation of questions is posed.
And in their description of various avenues of research the authors never lose sight of the fact that they are writing for a lay readership. The complexity of the working of the immune system is described as being like "a field of fireflies in a strong breeze at night, spontaneously coordinating their flickering to spell out a message, word by word." Beautiful, succinct and accurate.
On occasion the authors do slip. The section describing how cells work is difficult to understand. Perhaps a simple diagram would have helped. It was disappointing to see in a book so otherwise well crafted occasional lapses into what as a medical editor of many years I have come to refer to as, "doctors' research-speak". "Some of the major players are the above-mentioned growth factors." (My italics). "From the papers listed in Index Medicusà" may be confusing to the lay reader who does not know that this is a monthly listing of every medical research paper published in any journal of sufficient scientific standing to be deemed worthy of inclusion. The use of the verb "to prescribe" as in, "The patient was prescribed thalidomide", is simply incorrect usage of a transitive verb but is an expression heard daily in medical practice.
These are but minor criticisms of an otherwise excellent work which under the guise of telling the story of thalidomide subtly examines the extremes of human morality, the indefatigable nature of those who despite enormous handicaps still triumph, and the immeasurable void that separates badly from well-conducted science. ò
Patrick Taylor is a writer who spent thirty years as a research clinician in the field of human reproduction. He was for ten years the editor-in-chief of the Journal of the Society of Obstetricians and Gynaecologists of Canada. His recent novel, Pray for us Sinners, is published by Insomniac Press.