Heaven 2026: January Book Club - Dark Remedy by Rock Brynner and Trent Stephens
Sandemaniac
Shipmate
Posting early to annoy the hosts ensure I remember to start in a reasonable time.
Christmas Day, 1956, Stolberg, West Germany, A baby girl, the daughter of an employee of Chemie Gruenenthal in the town, is born without ears.
There is nothing to link her to any other cases because Gruenenthal's new drug is ten months away from the market - her father had taken samples of their new sedative home for his wife.
With the 20:20 clarity of hindsight, we now know that she was the first recorded victim of Thalidomide - a drug that changed bodies, minds, lives, and the legislative landscape around medicine.
This book records the events of the 1950s and 1960s around the epidemic of birth defects that thalidomide caused. It also records the drug's surprising afterlife - as a drug of choice for a number of diseases - that led to further discoveries, and caused much concern to those who had already been harmed by it.
I'll confess now to having an interest - I was lent the copy I have by a drinking mate who is a thalidomider. Most of us can read the book as outsiders. He went through it and his life is still affected every day.
Not sure that "Happy reading!" is the most apt opening salutation - but I hope those of you who join will find it interesting and educational.
Christmas Day, 1956, Stolberg, West Germany, A baby girl, the daughter of an employee of Chemie Gruenenthal in the town, is born without ears.
There is nothing to link her to any other cases because Gruenenthal's new drug is ten months away from the market - her father had taken samples of their new sedative home for his wife.
With the 20:20 clarity of hindsight, we now know that she was the first recorded victim of Thalidomide - a drug that changed bodies, minds, lives, and the legislative landscape around medicine.
This book records the events of the 1950s and 1960s around the epidemic of birth defects that thalidomide caused. It also records the drug's surprising afterlife - as a drug of choice for a number of diseases - that led to further discoveries, and caused much concern to those who had already been harmed by it.
I'll confess now to having an interest - I was lent the copy I have by a drinking mate who is a thalidomider. Most of us can read the book as outsiders. He went through it and his life is still affected every day.
Not sure that "Happy reading!" is the most apt opening salutation - but I hope those of you who join will find it interesting and educational.
Comments
I suspect the doctors heard that a lot! Funnily enough I'd never heard of the derivative Lenolidimide until I went down a Google rabbit hole to update myself on what had happened since the book was published (2001ish)- but an acquaintance on another forum, also a myeloma patient, posted a complaint about side efects that same day.
If you can find a good summary of what happened in Australia and why it took so long, that could be useful to drop jnto the discussion. I'd certainly be interested in reading it.
I didn't realise there is also a book about Lynette Rowe and her family (my childhood neighbours) and her legal case written by one of her lawyers. https://amzn.asia/d/2wuVxvQ
When I've got through my pile for other book groups I'll be joining up to read this.
Sodium valproate has been used for bipolar disorder and epilepsy for a very long time, it is tetragenic and has only been withdrawn for women of childbearing age in the last decade - 2018. I don’t know if anyone has sued.
Please don't out yourself if you don't want to, I am just being snouty.
1. How much of the story behind the original thalidomide crisis did you think you knew when you started the book?
2. Having read the book, how much did that change? What were you surprised to find out?
3.How much were you aware of the drug's afterlife treating leprosy, HIV and the like? Was there anything that particularly surprised you about that?
4. How aware were you of the role thalidomide played in shaping modern drug licensing? Do you think that politically motivated changes to the system risk new crises of this nature?
5. Finally, how do you think you might have faced a situation like that the thalidomiders faced, seeing the "wonder drug" that had caused them so much harm repurposed and potentially able to do the same harm anew?
I knew about the thalidomide crisis as it always seemed to be in the news in the late sixties and seventies, with TV programmes about the inspirational lives people with disabilities caused by the drug were living. I really didn't know much more than that.
I found the book fascinating and a bit depressing. The way drug companies seemed to be more concerned about profits rather than if their drug actually would do what it was claimed to do.
I didn't know it was used to treat anything else. If it works, great, though a lot of the time it seemed rather hit and miss, a sort of 'take this you've got nothing to lose' sort of approach.
Again I didn't know about the role in shaping modern drug licencing. I liked the section about the person in the USA government who refused to bow to pressure to license the drug.
I look forward to finding out what others thought, and I'll come back later with more thoughts after I've read their comments.
A fair amount, as there was a lot of publicity in UK in the 1970s though I never knew anyone personally affected. And being pregnant in the late 1970s-early 1980s, I was warned pretty firmly of the possibilities of foetal damage from any drugs, a fairly new awareness for pregnant women. Then in Australia I remember William McBride and his subsequent fall from grace. The clearest explanation of that episode is here.
On the other hand I hadn’t been fully aware of the political shenanigans taking place !
2. Having read the book, how much did that change? What were you surprised to find out?
I was surprised by the unease of thalidomiders about the experimentation with prosthetics. That seems particularly sad as presumably the medical technicians were doing their best, the work led to advances in the field, but those advances didn’t help the thalidomiders much. And the researchers do seem to have been pretty authoritarian in their approach.
3.How much were you aware of the drug's afterlife treating leprosy, HIV and the like? Was there anything that particularly surprised you about that?
I had heard that thalidomide is now being used for leprosy and some forms of cancer, though I hadn’t realised of the extent of its use for HIV.
It’s not unique, of course. I was a bit surprised when living in Fiji to find the hospital there was using Chloramphenicol to treat typhoid (yes it does still exist) – and to be given Chlorsig ointment recently as post-op treatment for a skin graft. Chloramphenicol (Chloromycetin) used to be given out readily for tonsillitis when I was a kid – but got banned for (I think) causing blood disorders.
4. How aware were you of the role thalidomide played in shaping modern drug licensing? Do you think that politically motivated changes to the system risk new crises of this nature?
I wasn’t very aware of the role, but it does make sense. In general the current system seems pretty robust, and enforced in most countries. USA was fortunate that an ethical and thorough regulator like Frances Kelsey was in charge when thalidomide came up for approval; it could have been so different. And I did wonder how the FDA under the present regime would act!
5. Finally, how do you think you might have faced a situation like that the thalidomiders faced, seeing the "wonder drug" that had caused them so much harm repurposed and potentially able to do the same harm anew?
It’s a hard one, isn’t it? On one hand, treating some cancers, or leprosy, or HIV complications meant some good could come out of a situation which has caused such pain, and most thalidomiders seem to have recognised that – but it can’t have been easy. And the very strict conditions around the new uses of thalidomide, not to mention that the new patients were pretty sick, makes harm much less likely – but not impossible.
I was born in Canada in late 63, thus conceived earlier in the year. By that point it seems the drug was not widely available in Canada. I remember a conversation with my mother (not sure what precipitated) that the drug was used for morning sickness and how she was glad she had not taken it. I have run into individuals a few time in my life who had been born after their mother had taken thalidomide. That’s about the extent of my background other than having seen the occasional news story.
2. Having read the book, how much did that change? What were you surprised to find out?
I was surprised to learn of its origins in Germany and that the blatant disregard for people’s health in its testing and marketing. I simply assumed that we have had stringent drug approval regulations for a long time.
3.How much were you aware of the drug's afterlife treating leprosy, HIV and the like? Was there anything that particularly surprised you about that?
I had heard about its treatment for leprosy; I had not heard about its use as an early HIV drug. The latter surprised me.
4. How aware were you of the role thalidomide played in shaping modern drug licensing? Do you think that politically motivated changes to the system risk new crises of this nature?
I did not know its role in the way drugs are now approved and licensed. We shall see if those regs continue in the US under the Trump regime.
5. Finally, how do you think you might have faced a situation like that the thalidomiders faced, seeing the "wonder drug" that had caused them so much harm repurposed and potentially able to do the same harm anew?
I don’t know. I would like to think I would want it used for good but not having been in such a situation it is mere speculation.
2. Having read the book, how much did that change? What were you surprised to find out? I was flabbergasted by just how reckless Chemie Grünenthal were, even in the face of mounting evidence that there was a serious problem, and likewise Distillers who behaved little better (incidentally, I've just discovered that Grünenthal are still in business). and the political shenanigans in the UK were a whole new world (Enoch Powell health minister? WTF?). And I'd naively thought that the drugs effects were so obvious that compensation would have been simple - when it was anything but, Grünenthal have yet to pay out to Spanish thalidomiders, for example. I'll be honest, I can't fit it into one post.
3.How much were you aware of the drug's afterlife treating leprosy, HIV and the like? Was there anything that particularly surprised you about that?
I was vaguely aware that it had uses in certain cancers, but was completely unaware of its uses against leprosy and AIDS - the latter to my surprise as I was at university at the time learning biochemistry. I would have thought we'd have been taught it. I was also unaware of its use in autoimmune conditions, or multiple myeloma. So even though I have spent most of my career in research, I was pretty surprised.
4. How aware were you of the role thalidomide played in shaping modern drug licensing? Do you think that politically motivated changes to the system risk new crises of this nature?
Again, I really wasn't aware of how much modern legislation revoled around preventing another thalidomide, and was brought into being by it. I've experienced some of the powers the FDA have (currently...) to inspect companies developing drugs, and seen some of the depth of testing and paperwork concerned - don't let anyone tell you that "no-one knows what's in drugs/vaccines" - utter bollocks! While the paperwork and oversight is one of the things makes drugs development very slow and expensive, and a lot of people are thinking that what is going on in the US at the moment will speed the process up, as many are worried that things will slip though the cracks being made - and who knows who might try to drive a bus through the gaps for their own profit? I'm pretty scared, TBH.
5. Finally, how do you think you might have faced a situation like that the thalidomiders faced, seeing the "wonder drug" that had caused them so much harm repurposed and potentially able to do the same harm anew?
Well, I put this in as the difficult one, so I could claim privilege and just keep it out with a straight bat. But that's not really fair, is it?
I can see that they would be angry and afraid. I know my friend has self-confessed trust issues with the medical profession, despite them giving him working hips - twice. I think people like Randy Warren were absolutely right to force themselves into the conversation. I really don't think I could have been that strong.
But the funny thing is that Distillers Speke plant was the first licensed penicillin factory in the UK, and Grünenthal in Germany. Strange how things like that link up.
My first lab job involved Salmonella so I'm not hugely surprised, though saddened, to hear that typhoid is still about.
Like you, though, I am surprised to hear about chloramphenicol. Aplastic anaemia is the really hairy side effect, along with bone marrow suppression. It is still very much the drug of choice for infections of the surface of the eye* which caused problems for the out-laws recently when father-out-law had a nasty eye injury that had to be treated with it several times a day. Mother-out-law worked in labs for years throwing the stuff about by the pound and as a result developed a dramatic allergy to it - so had to take incredible care administering it to avoid anaphylaxis.
* some years back I discovered that I needed "Infected Eye Drops" - thus said the packaging - personally I'd have preferred clean drops for an infected eye!
1. How much of the story behind the original thalidomide crisis did you think you knew when you started the book?
I knew the basic story and remember learning about it in high school and following the fight for compensation in Australia as mentioned above. \
2. Having read the book, how much did that change? What were you surprised to find out?
I found out a lot of new things including that the first factories that developed chemical based medicines made all sorts of other chemicals as well and were not specialised in inventing new medications. I knew regulations were poor, but didn't realise how unregulated the industry continued to be into the middle of the 20th century. I had an idea that once modern, scientifically tested treatments were developed that regulation grew with it and that most modern scientists considered patient safety. It turns out things weren't much better than the days of snake oil salesmen and cough medicines made with opium and alcohol. On the other hand most vitamins, supplements and alternative treatments still are not required to undergo the safety and efficacy tests that medications do, which seems like a major oversight. Quite regularly I read of people being harmed by taking too much of a vitamin such as vitamin B or getting sick from protein powders that have dangerous ingredients because they do not need to be tested.
3.How much were you aware of the drug's afterlife treating leprosy, HIV and the like? Was there anything that particularly surprised you about that?
(Readers might want to skip my answer to this one unless you are really into science and want to know more about leprosy
I wasn't aware of their use for either disease. I misremember learning at school that leprosy medicine was made from armadillos until a synthetic medication was invented, but not the specifics of the synthetic medication. Going down an internet rabbit hole I learnt armadillos are used to test treatments for leprosy and study the disease as they were the first animal species to be found to be affected by leprosy. Now leprosy has been found in red squirrels and chimpanzees as well. Mutated mice known as nude mice has been developed to create a mouse susceptible to leprosy so lab mice can be used instead. Leprosy is difficult to study because it cannot be grown outside the bodies of humans or animal species who are affected by leprosy.
Leprosy is treated with Multiple Drug Therapy, which is a combination of antibiotics that greatly reduce the disease becoming resistant to treatment. Thalidomide wasn't mentioned in modern treatment of leprosy in the articles and studies I read, but from the book it seems it is used by people who were treated for leprosy after they already had permanent nerve damage. MDT treats leprosy, but does not reverse damage already done to nerves.
So a bit off topic, but I learnt a lot of new information about leprosy, including that it has not mutated much over the centuries, has a high genetic component for who is susceptible to the disease and only infects a small number of people exposed to it and only a minority of the infected are symptomatic. Also scientists still do not fully understand the mode of transmission of leprosy.
5. Finally, how do you think you might have faced a situation like that the thalidomiders faced, seeing the "wonder drug" that had caused them so much harm repurposed and potentially able to do the same harm anew?
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I think it is hard to judge having not been in their situation. I agree that it was essential that thalidomiders were involved in discussions around new uses of thalidomide and participated in education campaigns about not using the drug during pregnancy.
Those of us who have had the opportunity to be educated are largely aware that certain drugs can cause damage to embryos and should not be taken when pregnant. I personally take an arthritis medicine that is not only teratogenic, but can also cause harm to unborn babies or miscarriage if used up to six months before conception by either parent. I even wash my hands after taking it as a pregnant woman touching the medication can even harm an unborn baby.
As someone mentioned above, there are still cases where doctors are unsure of how teratogenic some medicines, such as some epilepsy medicines are, and sometimes allow mothers to take the risk of taking a lower dose in order to have children while treating their condition. But that is not possible with the medicine I take and I would have reconsidered taking it if I was at an age and life situation where I was planning to have children/could accidentally fall pregnant.