Cover design by Toby James, HarperCollingsPublishers Ltd. Image (pill bottle) from Shutterstock.com.
Jennifer’s book about Thalidomide focuses on the US babies who should never have been born and were ignored for decades. Frances Kelsey had stonewalled the drug’s FDA application until the tide turned and it was withdrawn, so pregnant women never bought it in the land of the free. However, free samples – millions! – circulate, uncontrolled and untracked in history’s wildest marketing-cum-trials campaign.
As a result, dozens of Americans were born and have survived into their 60s. They thrived despite the absence of commercial settlement or government support.
It takes Jennifer a while to reach her focus group after she’s explored the drug’s origins and spread around the world. Her whodunit starts with a cast list and ends with a timeline, following heroes and villains, victims and fighters, plus a few who are harder to classify. It’s a fiendishly complicated story but she cuts neatly to the chase.
Partial disclosure. First, I’m a poor reviewer and tend to explain how a book hit me or made me think, instead of summarising or judging it. Second, it’s possible that I’m an undiagnosed thalidomide survivor, with phocomelia affecting all four limbs. My Mom’s journey through pregnancy was at the right time but crossed more borders than anyone Jennifer meets, so uncertainty coats the pill which she may or may not have taken.
This leaves me with mixed emotions as I compare my experience with that of the cohort who emerge at the end of the book.
Back in the ‘80s when I first read about the marketeers who targeted pregnant women for a new drug I felt, uneasily, two opposing reactions: the calamity of chemistry being squirted into pregnancy; and the creativity of the move.
As an R&D manager – photonics rather than pharma – I knew how hard it was to drag ideas to market. Howard Aitken’s quote (see here) could have summarised my career:
Don't worry about people stealing your ideas. If your ideas are any good, you'll have to ram them down people's throats.
So, a dark genius lay behind pinning an unknown molecule to morning sickness and millions of suffering women. I thought there was ignorance, too, but Jennifer shows there was more than slipshod practice behind the global mayhem and its US variant in the early ‘60s. They didn’t know what we know now but they knew about testing drugs; they knew what they had and had not done; many of them lied fluently.
Integrity lost on all fronts. Within the regulatory system, Frances faced ambiguously motivated colleagues, while doctor-patient confidentiality warped itself to prevent mothers finding out what had been done to them. If Dickens introduced us to the asinine law, here the law is an assassin, killing off hope and shielding those who by accident or design allowed the sky to fall in. I understand that hurt didn’t flow directly from an aggressor to a victim, but it’s still an indictment of the whole system, from care delivery and regulation to justice.
My first takeaway is that the law did not cover itself in glory, nor did many whose role was to uphold it.
I see this as a marketing campaign that took on a life of its own and swept all before it, so explaining why backfilling was unnecessary became easier than filling in the blanks. Thalidomide was a goose that laid golden eggs, but nobody knew what the gold was good for or whether it was toxic to touch. Instead of killing the goose the marketeers force fed it.
I understand why so many pleaded ignorance of what is now well-known. I found that whenever things went unexpectedly well or disastrously wrong in the lab, each layer of management would spin the story its way. Besides self-preservation and positioning, managers think they know best and try a frame that helps others share their insights. Soon, nobody knows what really happened.
As golden eggs drove the strategy, technical issues slipped from view – such questions as: how did it work; why did it work sometimes and not others; why were huge doses safe in some animal studies while much smaller doses were dangerous or killed in others?
The eggs shaped the contracts in US and made it harder to sort out the mess afterwards. Under pressure, strategy doubled down on more marketing samples (until regulatory approval would open the floodgates of profit) and simplified briefs to reps (except they weren’t called reps, but read the book).
My second takeaway is the danger of strategies that lose their moorings.
Why would a company risk such a course? There were nasty people around, but it’s hard to see this pitch gaining traction had the allies not helped themselves to so much of Germany’s intellectual property (IP) at the end of World War II. By limiting the options for its chemical industries, did they inadvertently unleash thalidomide? The case has been made that the savage reparations imposed at the end of World War I so humiliated Germany that the rise of Hitler – or someone like him – became likely.
Bottled-up humiliation is potent. It’s hard not to sympathise with Oscar Wilde on this one: to loose one genie is unfortunate, to loose two looks a little careless.
This leads to my third takeaway: repeated patterns of history.
Surely our covid response sixty years later has a sense of déjà vu: the inability to count consistently (deaths instead of births), products that did not do what it said on the tin, obfuscation and incomplete testing under crazy timescales. While the steps taken, certainly at the start, seemed justifiable if draconian, wasn’t it also a narrative that took on a life of its own and drove all before it?
My fourth takeaway is the survivors themselves.
Without settlements to fall back on, they developed extreme and creative resilience, several of them looking after their aging parents in the end. I’ve not followed the thalidomide saga in depth and don’t know whether there has been a longitudinal study. Jennifer presents sufficient evidence to make the question worth asking, so it’s not too late to assess how unusual these survivors are.
I can identify with that – I’ve got the qualifications although I don’t think I was ever written off as brutally as some of these babies. The malign Nazi desire to eliminate the disabled hovers over the narrative, as does the faith-related, at times fatalistic, view that this was God’s will. My parents did believe that God had allowed this to happen and, in some way, for good. As missionaries, they wondered whether a miracle healing might materialise but then found peace in other ways. I think this freed them from parental guilt and allowed them to get on with life and enjoy the surprises that followed.
Nor can I identify with the strained maternal relationship reported in some cases. As a kid skimming my Mom’s Bible, I saw she had underlined Psalm 147:10 (KJV):
He delighteth not in the strength of the horse: he taketh not pleasure in the legs of a man.
I can still remember that weird feeling of knowing exactly why her blue pencil had been at work.
The thing is, thalidomide really was a wonder drug, especially for leprosy and some cancers. It’s a funny old mystery and I liked Jennifer’s compelling read. Still, her hard work like my experience, is only partial disclosure. Let’s finish with 1 Corinthians 13:12 (KJV):
For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.