The Sunday Times reports on the thalidomide survivor’s quest for justice
On 29th April, 2018, THE SUNDAY TIMES featured an article on the history of drug thalidomide, the survivors’ continued fight for justice after more than 60 years and the new book ‘The Thalidomide Catastrophe’ which also uncovers possible Nazi links to the drug’s development.
Below are just a few of the thousands of stories of survivors of the catastrophe. Read the book, and consider what you can do to help ensure justice for the aging victims in your nation and worldwide.
Contact the Thalidomide Trust for more information.
Martin Johnson, Former Thalidomide Trust Director, Tells Tina's Story
In September 2000 I met a woman who would have a profound influence on the lives of many people. Her name was Tina Gallagher, and she had no hands or arms, and only two “flippers” for feet. This put her in the most severely-damaged section of our thalidomide survivors. Thalidomide was a sedative medicine, advertised as “completely safe”, which came on the market in UK in April 1958, and was withdrawn in December 1961, leaving at least 2,000 babies in UK with severe deformities, and causing the miscarriage or stillbirth of thousands more. The worldwide total was probably over 100,000 babies destroyed or injured by this drug, which left the survivors with damage ranging from brain, eye, ear, and face damage, loss of limbs, down to shortening of arms and removal of thumbs.
Tina operated her mobile phone with a pencil held in her teeth, and when we met she told me she was trying to catch up with her education. As a girl she’d been told to expect not to live beyond her ‘20s, so she’d not bothered. Passing 40 she was aiming to catch up. “So what are you studying?” “A level Psychology and Sociology” “Why those subjects” “So I can train to be a counsellor. I may not have much, but I’ve got two ears and a mouth, and with those I can help people”.
She became one of the founder members of our “Volunteer Visitor” team. On the day I first met Tina I also met a woman with no arms or hands who was struggling to live and support her 6 children with the paltry amount we were able to provide – then about £12,000 a year less tax at 34%. I started to understand how very unjustly these people had been treated, and that “if we could double what we paid out, it would still not be enough”.
I studied the resources of the Trust closely, to see what financial latitude we had. Not much, it seemed, but the tax imposition was downright cruel, and exacted by a government that was itself partly to blame for the disaster.
We got our MP John Major to write to Gordon Brown, (then the Chancellor of the Exchequer) asking for help to alleviate the tax burden, but it took 18 months for him to come back and tell us “No”. Just a couple of days later, a journalist for the Daily Mirror rang up to ask if there was anything newsworthy happening, so I told him about our problem with Gordon Brown. He investigated, and a few days later there was a front-page headline “Cruel Tax!”, and a two-page spread inside, featuring Tina, who expressed herself very articulately on behalf of her fellow Thalidomiders. Members of the group who had never been involved with campaigning before got in touch, particularly Nick Dobrik and Guy Tweedy, shocked by how tough life was for some of our worst-damaged people. These two men met for the first time one night in Parliament.
Nick & Guy’s stories
Our new MP (Jonathan Djanogly) had decided to help by tabling an adjournment debate, one evening in the House of Commons. Dawn Primarolo, then a junior Treasury Minister came to give the government’s response (No!) and was astonished when a sizeable number of MPs attended this late evening debate and robustly challenged the government. Watching this was a group of thalidomiders, including Nick and Guy. These were two thalidomiders who had similar arm and hand damage, which they both describe as “minor” but which you or I would describe as “severe” if it had happened to us. They discovered they were both Jewish, and running their own successful businesses. They decided, even though one of them was a staunch Labour supporter and the other diehard Tory, they should join forces and begin lobbying Parliament.
I joined them for our first day of lobbying. We had booked meetings with about 14 MPs, but several didn’t turn up, and some of the others expressed little interest in the problem. We had quite a bit of time to chat, and at one point Guy said to me “Here, you’re a born-again Christian, aren’t you?”, to which I replied “well yes, and I must warn you to be careful hanging around people like that, as they can get you into all kinds of trouble!”.
That winter evening, as we were leaving Parliament, Nick was a bit despondent. He said “I don’t think we can succeed”. It suddenly came to me to say “Look, you’re both Jewish, and I’m Christian, but we all serve the God of Avra’am Yitzhak and Yakov, and He is a God of Justice. We will get justice.” Soon afterwards, they met George Howarth, a Liverpool MP, who taught them the most effective methods of lobbying, which included persuading MPs to bombard the Minister with written questions, all of which have to be answered in writing (by their civil servants) within two weeks. From that time on, their skill at lobbying grew and grew, until they became one of the best-known lobbying teams in Westminster. By the Autumn 2003 they had a couple of hundred MPs signed up in support, and hundreds of “PQs” had been fired off.
It also turned out that our trustees (mostly very distinguished people in their different fields) had managed to gain the support of one of the country’s top tax barristers, free of charge. One day in October, I took a call from the Head of Trust taxation at the Inland Revenue. We had met him a few times, and he’d said how he really wished he could help us, how they had no desire to be taxing our beneficiaries. We were on first-name terms. This day he sounded unhappy, he told me how the activities of our team in Parliament “were not being helpful, they’re upsetting the Minister (Dawn Primarolo)”. I understood he wanted me to “call the dogs off”. I said that was outside my power, but would he be interested to know we’d had an expert counsel’s opinion on our case? He was, and I said we’d been told to look at the Finance Act 1996 sections 329 AA and AB. He said “thank God you’ve found that”, and in August 2004 a new law came into effect stopping tax payments on the grants we made. 30 years late!
That was the point at which Nick said “right, we’re going after Diageo now”. This was the company that had inherited the original Distillers company which supplied the drug in UK. I remember saying I didn’t think that would work, as they had only recently agreed to top-up funding, a total of £35 million to be paid out over 20 years. My opinion was supported by Sir Michael Wright, our Chairman and an eminent High Court Judge. A truly nice man, who cared very much for our people. Mind you, he’d already said 2 years earlier that he didn’t think we’d get the government to back down over tax. Turns out this time we were both wrong this time, and by the end of 2005 we were negotiating a new stream of payments, total value £160 million, to run to 2037. This would enable us to double the real value of our payments to beneficiaries within 15 years.
Once that was agreed, Nick and Guy started visiting the Thalidomide groups in Germany, where more than 2,600 survivors lived, and where the drug had been known under its brand name Contergan, to tell them our good news and encourage them to fight for a better deal. We built our links with the 100-strong Swedish group too. This led in January 2008 to the formation of a global campaign, ICTA (International Contergan and Thalidomide Alliance). Once this was rolling, Nick decided it was time to focus again on the British government, and their role in the Catastrophe (they had licensed the drug despite the lack of test evidence, given it preferential supply treatment, and prescribed and administered it through the NHS. Today the NHS would be the first target for litigation, but in those days the civil service propagated a falsehood that you could not sue “The Crown”).
Nick believed the government should make a public apology for their role in the affair, and make regular payments to assist with the health deterioration being experienced by the survivors. Sir Michael Wright for the third time shared the view that what we were going for did not seem to be possible. Mind you, in the later part of that year, when it came time to sit down with the Health Minister and hammer out the details you could not have wished for a better advocate than Sir Michael, who in his earlier years had been a top barrister for personal injury claims.
But that is to jump ahead. In January 2009, when the campaign began, the Secretary of State for Health was Alan Johnson, and he was totally opposed to us. In this he was backed up by his Health Minister, none other than Dawn Primarolo (again!). The Health Department civil servants were dismissive – to start with. This time, with all the accumulated experience of Parliamentary lobbying under their belt the team moved at speed, and by the summer had the committed support of the great majority of MPs, including representatives of all parties, including Sinn Fein and the DUP! Probably the only time they’ve been on the same side. Political resistance from the top was still strong, when all of a sudden, there was a cabinet reshuffle, and Alan Johnson was replaced by Andy Burnham, and Dawn Primarolo by Mike O’Brien. Within a couple of weeks the situation shifted, and with the full support of these ministers, the NHS staff began figuring out how to make the deal work. By December we had cracked it, and one afternoon Nick rang me up and said “I’ve been thinking”. Given that I knew he had been measured with a Mensa-level IQ as a teenager and was a Cambridge Economics graduate I knew this was not an idle statement. “Yes, I’ve been thinking, and I can see there have been far too many coincidences to make this happen. I have to say, it’s a miracle and the Lord is in it”.
January 2010 saw us in the gallery above the House of Commons in time to hear the Health Minister, Mike O’Brien, deliver a statement of behalf of the government apologising for the part they had played in the Thalidomide catastrophe. Most of our people were overjoyed, and some of the parents of the thalidomiders told me they had tears in their eyes. Tina Gallagher had died too soon to see this, but Guy Tweedy throughout the campaigning had made a point of keeping her photo in his bag, to show MPs and anyone else just what the campaign was all about. He will say today that she was an inspiration to him. By the time I retired in 2014 the government funding stream had topped £120 million.
After 2008, campaigns had got going in Austria, Australia, Belgium, Brazil, Canada, Germany, Italy, Ireland, Netherlands, Norway, Spain, and Sweden. By the end of 2015 new funding deals had been delivered to around 4,500 thalidomiders all over the world, mostly guaranteed for the rest of their lives, to a total value of billions of dollars. Included among these are at least 700 survivors who had never previously been compensated.
In 1987, German thalidomiders marked the 30th anniversary of the drug going on sale with an all-night vigil outside the factory, in the pretty town of Stolberg near Aachen. At the end of their vigil they went to the town square, near the original headquarters of the Grünenthal company which had originated the drug, and home of the family who owned the firm. There they released a cloud of black balloons, in memory of the children who never survived. This becomes more poignant when you understand that among the 100,000 or more babies destroyed or injured by this drug, we found that many who were born alive and could have survived were instead killed by the doctors or nurses attending the births. They had believed their disabilities meant they would not have a useful life. We have evidence that this happened in Germany and Britain, and undoubtedly several other countries too. The ICTA campaign began with a demonstration outside the German embassy in London in 2008, where for the first time in UK a cloud of black balloons was released in memory of the thalidomide babies who did not survive.
That was also the year when I felt it was up to me to start writing the story of this catastrophe, and I found in short order an expert on the German records and chemical history who wanted to help, and a professor, one of the world’s top historians of the German chemical industry, so in 2010 we agreed to turn what we were gathering into a book. As it turned out, we found we would be the first people to make public the full scale of this catastrophe, the worst man-made disaster of its kind in history. It also happened that we unearthed concrete evidence that the German government of the day had colluded with the company’s owners to protect them from the criminal charges they were facing by closing the trial down, and forcing the German victim’s families to accept a settlement of less than 10% of the known value of their damages. They also passed a law making it illegal for the victims to ask for any more money, and protecting the company from any more claims. We also found out the shocking way in which this drug has been kept in the marketplace over the years, when the evidence that is has any definite health benefits is scarce, and the evidence of its many harmful side effects is plentiful.
This book, “The Thalidomide Catastrophe” is being published shortly, but here I wanted to tell you the unwritten story of how the power of God is at work in the world today. In this affair, the hidden secrets keep getting exposed. One example was when we looked at a record of a meeting, secretly convened within the German government to decide how to resolve the trial of the executives of the Grünenthal company. I said to Ray Stokes (expert historian) “So they had a secret meeting to agree to do an illegal thing, but they took minutes which were filed and then archived”. He laughed, and said “That’s the German way! It’s how we know so much about the Holocaust!”. But this meeting minute had been unearthed just shortly after we got a copy of a letter from the German Health Minister in 2014 saying that such a thing could never have happened, and it would be unconstitutional! Coincidence?
I could tell you of another charity I know that has achieved vastly greater results in our lifetimes, 32 million blind people who have had their eyesight restored – but that’s for another day. In this situation, I can say I have seen the hand of God at work – reaching out to those who have been damaged or destroyed by this evil drug:
- How He put me in charge of the Thalidomide Trust.
- Revealed his heart for the many injustices inflicted on the survivors.
- Had a national newspaper journalist call up at just the time our story needed to be broadcast.
- Raised up a host of men and women all over the world with the gifts and talents needed to present the case to governments and companies implicated in causing the catastrophe.
- Changed the hearts of company directors and politicians to do what was right.
- Removed unwilling politicians from office at the necessary times.
- Uncovered evidence of government corruption and collusion.
- Privileged me to be in a place where I saw all this happen, and could tell the story.
Where is this story going? Well, while the tiny proportion of survivors have received a measure of justice through compensation, I can see that there is still a big issue about the “Blood of the Innocent”, all the babies slaughtered by this drug, this company. I think the final stage, unfolding over the next few years, will see the Lord address this question of guilt, and also those who corruptly covered up the crime. Watch this space!
I’m sometimes asked if I think such a thing could happen today, what with all the improvements in drug regulation and so-on made as a result of the Thalidomide catastrophe. I have to answer, “Yes, it could”. I say this first because I have expert advice that one thing that has happened is that the drug companies have learned how to cover their tracks much better, and how to present their evidence, to minimise the appearance of problems.
The second is that the procedure of scanning means that most such birth defects are now identified in early pregnancy, and the mothers are almost automatically recommended to have such babies terminated. Not fit to live. So the evidence to show the harm of such a drug would be destroyed before it could become known, and who knows how many capable and inspirational people would never get a chance at life?
One thing I’m clear about – that is not what God wants, He cares passionately about “the blood of the innocent”. He will one way or another, sooner or later, exact justice on their behalf.
When I was born without arms or legs, due to my mother taking thalidomide, the hospital told my parents that it would be better if I was left to die. They left me out in the hospital grounds in the hot sun and if it wasn’t for the determination of my parents, I would not be here today to say what I think about the German Government and the continuing use of thalidomide.
I was one of the lucky ones to be born into a remarkable, loving family but I am aware that across the world, families from every walk of life have had their lives irreversibly altered, which in many cases has led to divorces, suicides and infants being placed in care homes for much of their lives. We will probably never know for sure the number of infants who have died or been ‘mercy killed.’
The continuing financial exploitation of the drug must be one of the most cynical business practices the world has ever known. How many more children have to be born impaired for the German Government to take responsibility? How many more lives have to be destroyed before any real sense of guilt is shown and proper compensation given?
The whole disaster MUST be revisited and revisited now whilst those affected by this poisonous chemical are still alive and able to end their days feeling that justice has been achieved.
My brother Frederic was born in April 1962, severely damaged by the drug thalidomide that my mother had been prescribed whilst pregnant. He died in February 1963. I was five years old.
I watched my mother’s mental health deteriorate after Frederic died and my whole family thereafter suffered with my mum’s mental issues. She never got over the pain of losing her child to a drug that she had taken, although of course, she was never to blame. Frederic suffered the physical effects of the drug but we all suffered the mental scars.
If it wasn’t for this drug, I would have an adult brother now. My family would have lived completely different lives. Nothing can compensate for this and my family never pursued compensation from the drug company who did this to us all. But the company should be held accountable.
The fact that this drug is still being used in some countries is inconceivable to me. Have they not learned lessons or listened to those of us whose lives have been so changed?
I hope the message of The Thalidomide Catastrophe reaches the ears of the German Government and that it finally takes responsibility for ALL the lives that have been ruined.
Only 25% of the babies whose mothers took thalidomide drug survived and there are roughly 6,000 of us still alive today worldwide, 61 years after the drug came out. That’s one hell of a lot of dead babies. Entire families have been devastated, due to the pure greed of Chemie Grünenthal, who were well aware that they had not properly tested the drug.
It is inconceivable that this company has managed to get away with what can only be described as a crime. Governments worldwide are also responsible for allowing the drug into their own countries without testing it and it is only due to the wise Dr Frances Kelsey that there were not more Americans affected.
This drug should have been banned worldwide when it was discovered what it does to the unborn child. Sadly it was only withdrawn; our parents and the media were lead to believe that the drug had been banned. It should be banned now and every single Thalidomide Survivor worldwide should be properly compensated by those responsible. Governments who have compensated their survivors should not question how us survivors spend that compensation, I often feel like I am having to justify my very existence!
The tragedy that has happened in Brazil is proof of why the drug should be banned; now there is a second generation of Thalidomiders. How has this been allowed to happen? How many more families have to be destroyed by this drug before it is banned worldwide?
I would like to thank Dr Martin Johnson for writing this book and getting the truth out there and standing shoulder to shoulder with us survivors in our continued fight for justice.
I was born at home in 1962 and my Mam tells me about that day often. I was born without arms; a shock to my parents and to the medical professionals who delivered me. I was one of the luckier children born deformed by the drug thalidomide, because my family decided to ignore the medical professionals who suggested that I be put in an institution and to bring me home to be raised with my four brothers and loved just the same.
Growing up was not easy but with the support of my family I did okay. As I’ve grown older, there are still so many questions that need answering such as why did our government take so long to have the drug taken off the market? How might all our lives have been different if they had?
One memory really sticks in my mind. I was in a department store with two of my children when I noticed a man was watching me. He caught my eye, came over to me and kept apologising. He asked if I was a thalidomide and I replied that I was. He said that he had worked on the drug and saw what damage it had done to mice, but their report had been rejected. I just froze. He thanked me and seemed relieved that I was living as normal a life as I could.
As the years have gone by I found out that so many babies had died and how horrific some of their disabilities were, how families had broken up because they could not accept their children.
It sickens me that all those around the world whose lives have been affected by thalidomide have still not got the justice they deserve, and I call on the German Government to re-open the case and put things right.
I am honoured to have been asked to contribute towards the promotion of this very important book, which details our part in the story of the biggest medical disaster and scandal in history – namely Thalidomide.
Worldwide it is estimated that around 10,000 babies were affected by this drug, but this figure is a gross underestimation when one considers the unofficial euthanasia that went on in the UK and elsewhere in Europe and around the globe. In hospitals babies damaged by the drug were literally starved to death or left to die adjacent to open windows in the freezing cold, as bravely shown in the BBC TV series “Call the Midwife”. Indeed, I could have been one of the unknown statistics as the midwife suggested to my mother to leave me in the hospital as I probably wouldn’t survive beyond a few weeks. I’m grateful to my dear late mother that she ignored that advice and took me home.
I’m now 56 years old and a husband and father of two young children; Daisy aged 7 and Oliver aged 18 months. Whilst many Thalidomiders are now grandparents I didn’t become a dad until the grand old age of 49. As a Thalidomide survivor, I consider myself extremely lucky to have lived a relatively happy and fulfilled life. If anything, the real tragedy was for our parents – especially my Mother who fought against the drug company as one of the first 62 litigants, the lawyers and the doctors.
The fight that she and other parents started must continue and The Thalidomide Catastrophe rightly calls for a re-opening of the thalidomide case in German parliament
Mandy Kiddell's Story
I was first introduced to my mother on 4th April, 1962. After a difficult birth, the midwife was shocked at seeing that I had no arms. Mother, too, was distressed at seeing me. The medics at that time took it upon themselves to sedate her. After three days I was returned to my mum who “immediately” bonded and loved me instantly. Our mother and daughter relationship become much stronger with each day and each year that passed.
No one explained to mam how hard it would be; she was left alone to get on with it – like many other mothers in our situation. I was lucky to be brought up with three sisters that didn’t treat me any differently, except to fiercely protect me; something they still do to this day. Mam made sure that I was safe and secure at all times. And she loved me unconditionally.
Sadly, my mother passed away on All Saints’ Day, 1st November 2013, still feeling that heavy burden of guilt for taking such a powerful drug.
Life has been a huge battle for me – physically and mentally; but being the person I am today is down to my mother and my family who have made me stronger and wiser. I’m a firm believer that one day justice will be done! I hope the German Government as well as Grünenthal take responsibility for destroying so many Thalidomiders and their families’ lives worldwide.
It takes a special sort of elitist arrogance to declare any group or person free of any legal prosecution; a special kind of criminal too. The privileged group of men that agreed to this cowardly law to cover the corporate crimes of Chemie Grünenthal (that is, continuing to sell a drug to pregnant women that certainly deforms foetuses, in order to continue collecting massive profits), knew what they were avoiding – justice – and knew who they were protecting – the criminal Wirtz family (owners of Chemie Grünenthal, as well as ex paid up members of the Nazi party).
The post war German courts allowed this evil, unbelievable, and oh so cynical protection of the guilty! This single law prevented Germany’s thousands of Thalidomide victims, and every European victim, from ever getting justice, and unless the German Government. can remove this law and have an official enquiry into the whole corporate crime, they remain responsible.
Martin Johnson, former Director of The Thalidomide Trust, ex RAF pilot, has tirelessly sought the truth and for justice for all Thalidomider Survivors, uncovering shocking depths of guilt and proof in The Thalidomide Catastrophe that must surely pave the way for, finally, Justice.
When I gave birth to my own daughter, the horror that my mother would have experienced having given birth to a thalidomide baby became apparent to me. “God, if this baby is going to suffer, please take her now before I grow to love her any more” had been my mother’s silent prayer whilst studying her damaged newborn baby. Her love and support drove me to become a determined, confident and strong woman.
Thalidomide damaged my arms, legs and reproductive organs. Despite being told otherwise, I survived, have been loved, given birth. Conceiving and carrying a pregnancy to term with an under-developed uterus was a huge achievement and I had a healthy baby girl, fully developed and perfect. Thalidomide did not take these experiences away from me although it has for so many others.
However, my inability to manage daily life without support from another person causes endless frustration and my mother describes her pain observing me struggling with everyday tasks. Watching someone experience pain that interferes with their life and robs them of the independence they fought so hard to achieve is hard.
Grünenthal, the company responsible for the devastation this drug caused has never been held to account. The German Government should ensure the full extent of this horror story is revealed and officially revisited.
Popular current affairs website ‘The Conversation’ offered an interesting article on ‘The Thalidomide Catastrophe’ by Martin Johnson.read more
Author of book on The Thalidomide Catastrophe will attend book launch at University of Glasgow in March.read more
A recent blog post by Don Botham on the God TV website shares the inspiration behind Martin Johnson’s recent book Martin Johnson.read more
So stated the Evening Standard in their excellent review of The Thalidomide Catastrophe by Martin Johnson, Raymond G. Stokes and Tobias Arndt. Journalist Geoff Adams-Spink writes: “Piece by piece the authors have put together a grim jigsaw that the family...read more
Martin Johnson, co-author of The Thalidomide Catastrophe, was invited by UCB Radio to speak about his book and the thalidomide survivors' campaign for justice. He was interviewed on Wednesday 23rd March by Paul Hammond on his current affairs show, Talking...read more
Leading Thalidomide campaigner Guy Tweedy was recently interviewed by the Harrogate Informer along with the owner of the first independent bookshop to stock The Thalidomide Catastrophe, a comprehensive guide to how the catastrophe happened, who was responsible and why...read more
Available formats: Paperback ebook (ePub edition) ebook (Kindle edition) ebook PDF “This momentous book is the first comprehensive history of thalidomide… It demonstrates how many thousands of victims could have been spared very late in the day if Chemie Grunenthal...read more
Simon Hoare MP asked the Prime Minister whether she would "augment the work of the foreign office to make the case for UK thalidomide survivors to the Germany government to finally get the justice that they for too long have been denied". In Prime...read more