Editorial Note: This is adapted from a piece by Martin Johnson who with colleagues has just published The Thalidomide Catastrophe. This is available as of today on Amazon and at Onwards and Upwards. This is one of the great books about what the twentieth century was all about. A must buy, costing almost nothing.
Child abuse and the harms of not being believed – engaged with – and Jose Mario Bergoglio’s personal apology for the harm he personally has inflicted by not engaging have featured here recently. There have been no greater episodes of child abuse than thalidomide, and no greater cover-up. It is the paramount symbol of all drug harms, and stands still as a marker for the need for pharmaceutical companies to engage.
But its not just about harms. The Thalidomiders are among the most amazing people to ever walk this earth. In this day of Super-Powers and Black Panthers, they are the real heroes.
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was a sedative medicine, advertised as “completely safe”, which came on the market in UK in April 1958, and was withdrawn in December 1961, leaving at least 2,000 babies in UK with severe deformities, and causing the miscarriage or stillbirth of thousands more.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
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”. 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 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.
Beyond the UK
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.
“The Thalidomide Catastrophe” is now published. 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?
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?