Dark Remedy: The Impact of Thalidomide and Its Revival as a Vital Medicine

by Trent Stephens, Rock Brynner

Twentieth-century science is too complex for any one reader's apprehension, so we look for stories that help us grasp its enormity. The jubilant discovery, demonization, and subsequent rehabilitation of thalidomide offers a wide-ranging outline of public attitudes toward science following World War II, and the authors of Dark Remedy: The Impact of Thalidomide and Its Revival As a Vital Medicine tell the story well. Historian Rock Brynner and embryologist Trent Stephens--who may have finally determined the drug's mechanism of action in 1998--treat us to both a devastating indictment of the under-regulated pharmaceutical industry of the 1950s and a penetrating study of thalidomide's reintroduction into mainstream medicine through the black market. The powerful anti-inflammatory properties of the drug make it a popular choice for treating arthritis, leprosy, some cancers, AIDS, MS, and many other debilitating illnesses, but it has only recently won grudging approval. Though the its tone can be acidic (in one instance referring to the "Utopian prosthetics custom-designed for the deformities caused by Utopian medicine"), the book is, for the most part, fair to the corporations that caused and then ignored the epidemic of birth defects, the victims who understandably tried to prevent the drug's revival, and the regulators who were too often bound by short-sighted legislation to do their jobs. The heroes and villains are larger than life, the stories and the science are equally compelling, and Dark Remedy ultimately combines the best elements of journalism and myth. --Rob Lightner

Genres: Nonfiction, Science, Medicine, Medical, History, Stem

246 pages, Kindle Edition

First published January 10, 2001

Reviews

[Kaethe · Rating 5 out of 5]

April 18, 2022. 97 of 228 pages
Update here because I am too damn wordy for the actual update box.

I love a compelling story of a medical and legal conundrum, like The Day of St. Anthony's Fire. I wonder if any country has a good response team established to deal with catastrophes like this that aren't about property. As far as I know there isn't anything in place in the US's insane monster of a "medical system." There would be investigations, but nothing to cover the immediate medical and social services assistance, as far as I know. And Oxycontin has shown us that even when a source of funding is finally found in lawsuits, there is little likelihood of timely care to those harmed, or even to non-specific treatment such as substance abuse clinics. Did any tobacco-settlement money go to providing treatment for chronic breathing disorders or lung cancer? It isn't as if we didn't know that more disasters like this will occur, and that victims won't necessarily be in close proximity. If anyone can recommend a good source for what kind of treatment, if any, has been provided to the Flint lead-poisoning victims, I would be grateful.

***

Apr 19, 2022

The writers always focused on people which provides the connection that unites the very different emphasis of each chapter. Nuanced and well-rounded, it's an outstanding example of covering a difficult subject without belittling viewpoints, except those of actual Nazis who were trying to avoid prosecution. And even then it wasn't a simplistic "Nazis are evil" hot take. They referred to specific aspects of the whole hideous machinery of genocide that would predispose doctors in particular to a callous disregard for others.

If you're interested in real and terrifying topics, there are a lot of nightmares to choose from. Body horror of many different kinds, legal shenanigans from Kafka and Dickens, and so very many wrongs perpetrated against the children of thalidomide. As if that weren't enough there is also some high-level political/corporate malfeasance and an array of upsetting diseases. For all that it isn't a grim book: we are also shown people who made decisions and fought the good fight at every level from struggling families all the way up. More than one hero is just trying to do their job the best they can.

There is one specter raised, though, that is almost funny to me now. Throughout the book the authors return to how relentlessly the children shaped by thalidomide were studied and experimented upon. There is mention of a doctor finding an unexpectedly high incidence of autism among them. When the expected number was more like 16 out of 10,000 people, among thalidomiders it was more like 5%. (This is current in 2000.) The incidence of autism in 2022 is estimated at 1% in all countries reporting. And there is reason to consider it higher. Anyway, I'm cynically amused because an autism panic started around then, just as wrongly invested in the need to fix a new batch of broken children, without consulting people with the same lived experience.

Library copy

[Bridget · Rating 4 out of 5]

Public health! Public health!

[Brooke · Rating 3 out of 5]

7.5/10. Super interesting book! It follows the history of the drug thalidomide, from its shady beginnings to being available everywhere to causing severe birth defects and nerve damage to being outlawed and facing countless charges in court. The drug changed in many ways how we view and test drugs to be used by the public. The story of Frances Kelsey was highlighted, showing how perilous a situation the US was in. Possibly the most interesting part of the novel was the attempt to figure out how and why thalidomide worked after its removal from the public--not only was thalidomide re-discovered as a "wonder drug" to help cure diseases such as leprosy, certain cancers, and HIV, but it helped scientists discover crucial information about in vitro development. My only complaints are that the writing was only decent, the story was boring at times, especially in the legal battles, and it got very technical.

[Fiona · Rating 4 out of 5]

This is the story of the drug Thalidomide and how it was resurrected from ignominy to treat everything from arthritis to cancer. Thalidomide was introduced in Germany in 1957. Post WWII many Germans and Britons were suffering shell-shock and anxiety in the aftermath of constant air-raids and bombings. Sedatives were in high demand but barbiturates were dangerous with high instances of overdose a common problem. Thalidomide was released onto the market as a sedative so safe that it could be used during pregnancy, it was considered so innocuous that it was even sold over the counter in many countries.
A epidemic of birth defeats linked to Thalidomide proved this was not the case and later investigation uncovered it had been rushed to market with minimal testing. Those children born with the birth defeats and their families endured years of court cases to obtain compensation from the drug companies.
The Thalidomide tragedy changed the way drugs were approved for market forever.
Thalidomide was first brought back from ignominy to treat leprosy and was used in the early treatment of HIV before being used for a range of diseases affecting the immune system. This book is well written and researched and one of the authors Rock Brynner was treated with Thalidomide himself as a last resort for a disease that had resisted treatment from other drugs.

[Bird · Rating 2 out of 5]

Interesting history, poorly told

Dark Remedy offers an accounting of the curious history of thalidomide, but it is unfortunately clunky to read, prone to pity or inspiration porn, and of an uneven narrative. The legal areas are delightful and marked by funny turns of phrase while much of the rest is dull or pandering.

[Jas Reads · Rating 3 out of 5]

I had to read this for school, so tbh I did not read the entire book in a lot of detail but rather focused on the bits that were important to my studies, and mostly skimmed through the rest.

The book goes through the discovery of thalidomide, the spread, trials, errors, villains and heroes of the story, effects of the drug, banning and revival, mechanisms of action and of course victims' lives.

I was pleasantly surprised. It reads nicely as a story, it doesn't have the textbook feel I thought it would, although there were a LOT of names being thrown around. Obviously, it was a huge occurrence so a lot of people were involved, but it was hard to keep track of everyone sometimes. The timelines were sometimes confusing as well because the story doesn't always follow a chronological timeline, but rather the authors write about different things happening in different parts of the world simultaneously, but in different chapters, so that could be a bit confusing and made it hard to put the whole story together.

Overall, I thought it was a nice little book that really brought all aspects of the thalidomide disaster and I would recommend for people interested to learn more about it.

[Julie · Rating 4 out of 5]

This was such an interesting and sad book about the history of Thalomide. The authors trace the drug from its beginning: from the doctor who developed it and who had a questionable history, stories of the families whose children had suffered from phocomelia (malformations of the arms and legs) and to its revival of use in cases of leprosy, multiple myeloma and HIV. I found it to be thoughtful and well written.

[Lisa · Rating 3 out of 5]

The story of thalidomide is fascinating, which overcomes some of the weaknesses of this book. This is also sorely in need of an update, as the mechanism of action for IMiDs was published ~2010 - the word cereblon is not in this book.

[Brit McCarthy · Rating 3 out of 5]

I know what you're thinking. You're thinking "Brit reads some really strange books". And yeah, I do, but this one is actually prescribed reading for my breadth subject Drugs That Shape Society. It's been an interesting (although completely unrelated to my degree) subject that poses some interesting moral questions regarding the use of legal and nonlegal drugs in society. One of the drugs we study is thalidomide, hence the required reading of Dark Remedy.

Dark Remedy was an interesting read about a drug I knew nothing about at the start of the book. Thalidomide is a chemical compound manufactured in the 50s by German pharmaceutical company Grunenthal, marketed as a sedative for use in patients with anxiety, colds, headaches, insomnia among other conditions. Despite the lack of research and testing, thalidomide was promised to be "completely safe", so much so that pregnant women wouldn't even bother to inform their doctor that they had taken it. About a year after it became accessible to the public, often sold over the counter without prescriptions, the complaints started to roll in. The most common side effect to be linked to thalidomide was polyneuritis, or nerve damage. Grunenthal brushed these reports off and swept them under the rug, all the while hiring a private detective to keep an idea on patients and doctors who reported them.

Then came the epidemic of children born in Germany with rare birth defects, including missing ears, reduced limbs or extra toes or fingers, among other defects. At first it was thought they must be genetic conditions and the link to thalidomide had not yet been made. Meanwhile, in Australia a obstetrician named Dr. William McBride treated a patient with severe morning sickness for whom all other drugs had failed. He had just been introduced to the newest drug, suggested as a sedative for patients in labour, and administered it to his patient. It worked and so he continued to prescribe it, never knowing the sentence he was giving their children. It wasn't until the children were born that Dr. McBride started to look into the causes of their birth defects. By the end of that same weekend he was convinced thalidomide was to blame, and he began to conduct thalidomide trials on mice and guine pigs.

Dr. William McBride was the first person to connect thalidomide with birth defects, however it didn't stop the epidemic straight away. Thousands of babies and families were affected by thalidomide before it was taken off the shelves, forever having ruined their lives. There were many court cases and although compensation was awarded, Grunenthal and the British company Distillers were never criminally charged. When thalidomide was finally taken off the shelves and made no longer available, everyone breathed a sigh of relief. But thalidomide was not gone forever.

Within the last twenty to thirty years, it has been discovered that thalidomide can be used to successfully treat conditions such as leprosy, myeloma, HIV and various cancers. Thalidomide's revival, as it is called, improved the quality of life of many people whose diseases had ostracised them from the community. At first it could only be obtained illegally, over the American/Mexico border but after years of deliberation and consideration, thalidomide could be prescribed by doctors again, complete with the provision of birth control and a high understanding of the risks involved. What may have come as a surprise was the support of the "thalidomiders", those that had been born with defects caused by thalidomide who had managed to live past childhood. In a compassionate statement by Randy Warren, founder of the Thalidomide Victims' Association of Canada, he expressed that they could not allow people to suffer by restricting their use of thalidomide. All they asked was that the education of the effects of thalidomide be made clear to potential users, which could only be done if the drug was legal. A photo of a thalidomide child is included in every prescription of thalidomide.

I found this book to be the right mix of science, anecdotes and empathy. As a Science student, I understand all the talk of DNA, clinical trials and other science speak but as a person I was touched by the stories of thalidomide survivors and the people who worked tirelessly, such as Frances Kelsey, to make sure thalidomide didn't cause more damage. Dark Remedy shows us what went wrong, the carelessness of the manufacturer, the blatant disregard for the rights of the victims. It gives us the stories of those who suffered because of thalidomide and also those whose lives were saved by it. It was an insightful read that opened up my eyes to a tragedy I didn't even know about - and the villains and heroes of the story.

3.5 stars.

[Amy · Rating 4 out of 5]

On the whole, an accessible story of thalidomide, the horrific damage it caused, how it miraculously was kept off the US market leading to many of today's requirements for premarket testing of drugs, and its ultimate resurrection. I really wanted to give it 5 stars, but had to take one off for the authors' lack of research displayed in Chapter 9. The description of the IND and NDA processes are at best confusing, and contain some glaring errors. These are rather important in a story of the testing and approval of a drug. I chalk it up to the scientist being a bench scientist and not actively involved in clinical research, but all the more reason to have done his homework. However, his passion for his work did shine in Chapter 11.

[Casey · Rating 4 out of 5]

I picked this up because I work closely with thalidomide (and the other ImiDs) on a daily basis. The history of drug discovery and thalidomide’s chaotic and heart-wrenching early history are told in a welcoming but direct manner. Unfortunately, as tends to happen in science, researchers have come a long way in understanding the mechanism of action of thalidomide since the printing of the book, so the last few chapters are clearly out of date. With that being said, it is a perfect representation of the scientific process wherein we make hypotheses, test them with experiments, and update our models with our new data. Paradigms can be shifted in a single afternoon, so it’s not surprising that nearly 20 years after publication, our understanding is much clearer.

[Brittany · Rating 3 out of 5]

Thalidomide was the prescription given to pregnant women in the 70's for nausea - among other things. It resulted in horrendous birth defects and other drastic and tragic side-dffects. This book exposes the conspiracy involving the pharmecuetical company that "tested" this drug and also discusses how this drug was approved by so many developed countries. Interestingly enough, The United States was the only one NOT approve it's use. This book may be dry, but I learned a lot and I would recommend it.

[Alison · Rating 3 out of 5]

I had to stop reading this book because it was too technical and sad. Too many players in the drug companies and it really got me upset about big business being blithely ignorant about the health and wellness of normal everyday people.

[Grazyna Nawrocka · Rating 5 out of 5]

We live at the time of pandemic, and this book makes you wonder about reliability of pharmaceutical companies. The statement that it sometimes happens that there is a medicine in search of disease (quite opposite as it should be) is really scary.

Thalidomide caused a lot of misery, was supposed to help sleep, but resulted in many malformed or prematurely dead children. I was very surprised to find out that it can be transferred in semen. This would indicate that many more children were unknowingly affected.

The reason I read this book is that in the other resource, one of AIDS sufferers complained about limiting thalidomide research to cancer patients, although the medicine offered strong promise to cure his disease. It turned out that in 2000 the pill was used to deal with 130 different diseases like leprosy, multiple sclerosis, Crohn's disease, and other less commonly known ailments, but there was much better and safer treatment discovered for AIDS. Although thalidomide caused extensive nerve damage if used over long period of time and in wrong dosages, it was still used if there was no better option.

I have no personal interest in this subject area, yet the book was very interesting, and I enjoyed reading it.

[Marguerite · Rating 5 out of 5]

Although published in 2001 (24 yrs ago, as I write) I found this book to be very informative. I took thalidomide for multiple myeloma in 2004. At that time, it was “the new kid on the block” and was causing never-before heard of results in treatment of multiple myeloma, a cancer of the plasma cells (the immune system) which carried with it a grim prognosis of one year without treatment, maybe three years with treatment. Until the use of thalidomide for the treatment of myeloma, the diagnosis was a death sentence. All I knew of myeloma was that it had caused many thousands of infants to be born with severe deformities if a pregnant woman took it between the 3rd and 6th week of gestation. The drug was banned for pregnant women in the early 1960’s. Banned but not forgotten. Dark Remedy is the account of how dedicated scientists (and not greedy drug companies) discovered that thalidomide was, indeed, the drug of choice for several devastating diseases, such as Hansen’s Disease (leprosy). It reads someone like a detective novel with some things you may have to Google 🤣. Im living proof, 21 years later, that the scientists were right. (Not everyone is as fortunate as I, but Science Is Real).

[Judy Egnew Ness · Rating 5 out of 5]

This book was published in 2001, but it's still a fascinating medical tale. Being a "Baby Boomer" born during the thalidomide birth defect tragedy, I grew up hearing the stories and saw photos of babies born with flippers instead of arms and legs. This book covers the development and unethical promotion of thalidomide by drug companies that had not tested its safety, the resulting, epidemic of deformed babies, the lawsuits and trials, and the political-economic powers that contributed to the tragedy. Part mystery, part detective story, part political expose, and part science textbook, it continues to the end of the 20th century as science began to understand the mechanisms of limb-development and how thalidomide impaired that development. Then it was discovered thalidomide can successfully treat complications of leprosy and multiple myeloma.

[Daniel Hodge · Rating 4 out of 5]

The history of this drug and how it tied into major reforms in the USA and the UK is incredibly fascinating. The writing of the book itself is pretty dry and my edition had a tenant/tenet error, but the subject matter itself is interesting enough that it's worth getting past that.

There's incredibly heartbreaking stories and a lot of evil, callous disregard for human life contained within these pages, but there are also examples of the best of humanity, and that's always been a tried-and-true recipe for a great read.

[Anna Engel · Rating 4 out of 5]

This was a fascinating read. I had some understanding of the horrors of thalidomide prior to reading "Dark Remedy," as well as newer research into other therapeutic uses of the drug. But the whole story is so much more complicated and filled with wrong turns.

The authors' biases definitely come through in their word choices – such as evil. They also ascribe malicious intent to a lot of the early players in the tragedy, but don't seem to realize that hindsight is 20/20. While that doesn't excuse the lack of testing and irresponsible behavior, it doesn't mean that the mission was evil.

[Marius · Rating 4 out of 5]

This story details the origins and necessity of modern Pharmacovigilance. A must for anyone starting in the industry, a good reminder for the rest of us. Told as almost a mystery, it's a page turner. Good analogies of the science for novices, too. In the pharma world of benefit-risk, the story of Thalidomide should never be forgotten and the learnings from where something so reviled, when properly targeted, can be used for good.

[Mv · Rating 4 out of 5]

This story is unbelievable, but actually 100% true. I read this for work to better understand the origins of the clinical trial process. This story is tragic and complex and a good reminder of what's at stake

[Sam Mansfield · Rating 5 out of 5]

Vary good history of the drug thalidomide. Not riddled with opinion and supposition, but scientific data and studies that express the moral and ethical decisions (or lack thereof) that goes with producing and using a drug to cure our ills.

[Jill Laster · Rating 4 out of 5]

Really really good to understand the history of Thalidomide and government regulation in pharma - but so many drugs have been approved in the last 24 years since the book was written - I need the update.

[Chloe · Rating 3 out of 5]

This book certainly dates itself throughout but impressively condenses thalidomide's story into about 200 pages. I'd recommend it to those in the health sciences and perhaps anyone curious about drug development and regulation, the immune system, and patient autonomy.

[Kat Dixon · Rating 4 out of 5]

A fascinating and comprehensive look at thalidomide past and present. This book serves as an interesting companion to contemporary discussions on OxyContin.

[Leo Chi · Rating 4 out of 5]

This is a prescribed book in my university subject "drugs that shape society".

It closely scrutinized the development, marketing of thalidomide, and the epidemic side-effects that caused polyneuritis and numerous birth-defects. It further investigated the potential causes of these side-effects, and the birth of novel regulations following reform.

The financial ambition (and thus the deliberate research misconduct) of the pharmaceutical industry (namely Grünenthal and several other companies in the UK, US and Canada etc.) and the lack of effective regulations were some of the many reasons that gave rise to this tragedy in the post-World War II era. However, it contributed immeasurably to the improved research and approval scheme for novel therapeutics.

As a student majoring in biochemistry, I enjoyed the scientific side of the narrative from the author. He emphasized the critical reasoning from key figures that served to avoid the escalation of this tragedy (Dr. Kelsey), to unravel the correlation between applications of the drug and the birth-defects, and to illustrate the mechanism of action (the author himself was a researcher contributed greatly to this understanding). The well-crafted narrative demonstrated the importance of critical thinking and scientific integrity, which effectively prevented the tragedy from escalation.

Thalidomide was not merely demonized in this book - the invaluable application of the drug in the context of leprosy (especially ENL), HIV symptoms, cancer, pyoderma and multiple myeoloma demonstrated its effectiveness in ameliorating inflammatory (and other) diseases and saving numerous lives.

However, when describing some of the key figures and events, the author could get slightly subjective (understandable since it was such a notorious event), which diminished the neutral scientific attitude to some extent.

Another thing that baffled me was the jiggle cage experiment, where the method was claimed to be dependent on the reaction between a platinum wire and a sulfuric acid bath. If the platinum used was not an alloy and the recount was accurate, I recommend the person who purchased the wire to consult Consumer's Rights...

Overall this book is very insightful and informative. Thanks for this amazing study.

[Chelsea Erceg · Rating 3 out of 5]

I'm really more of a reader of fiction, but am trying to expand my horizons lately. So, I did find parts of the book to drag and be a little bland, but perhaps that is just my preference for fiction taking over. All in all, an interesting account of thalidomide's initial introduction into the market, as well as its revival. Especially interesting to me, as I work in the medical field with patients currently being treated with Revlimid (mentioned in Dark Remedy as CDC 501).

However, I did note one discrepancy. On page 161, "among patients who undergo allogeneic bone marrow transplantation (i.e., of their own marrow)..." - Which is incorrect. Bone marrow transplantation using your own marrow is autologous. Allogeneic transplants are from matched donors. Not a big deal, but incorrect none the less, and so makes me questions some other facts stated.

[Fishface · Rating 4 out of 5]

An unbelievable story. The world's most reviled drug, taken (mostly) off the market and finally studied properly, proves to be a real lifesaver for people who can't get help any other way. But meanwhile, are users truly safe? The authors skirt around the fact that the stuff has really been in circulation all along, with or without proper permission -- they skip entirely, for instance, over the fact that an unstated number of thalidomiders were born in the USA (I know a couple myself) even though the FDA never approved the stuff for use here. What about them?

[Bea · Rating 4 out of 5]

An interesting read. It was all new to me. A few parts dragged, especially near the end. Most of the impact came earlier in the book, and by the end most of the steam seemed to have dissipated. Altogether, though, it was an enjoyable and educational trip through the history and consequences of thalidomide use. I'd recommend it for anyone interested in the drug or the medical climate in the first half of the twentieth century.

[Meggan Newland · Rating 5 out of 5]

Again to your science folk, esp those in research, loved this. Thalidomide related birth defects changed the FDA requirements for new drug approval. Such a cool story of its revival too.

[Kelsey Tilyard · Rating 3 out of 5]

Very informative, and interesting facts about the consequences of Thalidomide, but sometimes hard to read.