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Thalidomide campaigner calls for memorial to stop drug's danger being forgotten - RMS Consultancy

Thalidomide campaigner calls for memorial to stop drug’s danger being forgotten

14 . 07 . 11

by Madeleine Brindley, WalesOnline  Nov 28 2011

Thalidomide was both one of the first wonder drugs and one of the greatest medical tragedies. Fifty years after its licence was withdrawn, Health Editor Madeleine Brindley spoke to Rosaleen Moriarty-Simmonds about its legacy and the campaign for a permanent memorial for its victims.

Fifty years ago, the licence for one of modern medicine’s first “wonder drugs” was withdrawn three years after it came onto the market after babies were born with severe birth defects.
Thalidomide had been prescribed for a whole range of conditions in post-war Britain, although we now remember it as a drug given to pregnant women to prevent or offset the effects of morning sickness.
Thalidomide has become known as perhaps the greatest medical tragedy for the damage it caused not only to the children born with missing limbs, but to whole families affected by a medicine which had been feted and praised for its healing properties and numerous applications.
December 2, 1961, when thalidomide’s licence was revoked, was not the end of the thalidomide story. Despite its formidable reputation and well-known side-effects, the drug continues to be used worldwide and there’s a growing body of research into thalidomide, determined to find new applications for this “wonder-drug”.
A campaign has also been launched by disability rights campaigner Rosaleen Moriarty-Simmonds for a permanent memorial to all thalidomide’s victims in the UK, including the 456 surviving adults.
The 50-year-old, who lives in Cardiff, was born with no arms or legs – as her autobiography states, she has four fingers, two sprouting from each shoulder and 13 toes on legs, which come to an abrupt end above the knee – after her pregnant mother Ellen Philomena, 18 at the time, was prescribed thalidomide.
“Thalidomide was being prescribed for any ailment – it was given if people needed to get a good night’s sleep because it was a sedative,” said Rosaleen, who is known as Rosie. “It was more or less seen as the next best thing since penicillin.”
Developed by German pharmaceutical company Chemie Grünenthal in the Rhineland, thalidomide first secured a patent in 1954. It has been suggested it was first produced as an antidote against nerve toxins, such as Sarin but it has also been suggested thalidomide was in existence during the war and that it was even tested in Nazi concentration camps.
Thalidomide was launched in 1957 – a year later in the UK – and was found to work as both a tranquilliser and a painkiller, earning its early reputation as a “wonder drug” and was prescribed for insomnia, cough, colds and headaches.
Its anti-sickness properties led to it being prescribed to pregnant women to inhibit morning sickness – until then scientists didn’t believe that any drugs taken by a pregnant woman could cross the placenta and harm the unborn child. Thousands of women took thalidomide as a result.
“It was advertised as safe for both women and children to take because no one could overdose on it,” Rosie said.
“Every doctor in the country was given free samples and then they prescribed it to women who were pregnant.
“But the earlier you took the drug during pregnancy and the more tablets you took, the more damage was done. Probably there were thousands who were affected who we don’t know about because thalidomide caused the foetus to abort.”
Some 12,000 thalidomide-impaired babies were born worldwide but it has been estimated that another 40% – 4,800 – died before their first birthday. Some estimates have put the number affected as high as 50,000. A small group of around 60 parents with thalidomide-impaired children in the UK took legal action against the Distillers Company (Biochemicals) Limited, which manufactured the drug, but were forced to settle out of court for just 40% of the value of court-ordered compensation – Rosie’s parents, Ellen Philomena and Denis Moriarty, were the last to agree.
Rosie began researching thalidomide while at university – she wrote her thesis about thalidomide and the legal implications of the case. She would go on to write her autobiography, Four Fingers and Thirteen Toes, which contains much of that research.
“At that stage I found so much more information than my parents were able to give me – as a child there was never an issue about me asking questions, my parents explained it the best they could.
“And then, in the early 1990s, I saw a documentary programme about a new generation of thalidomide babies born in Brazil and I couldn’t believe it. I couldn’t believe it was happening again. I eventually learned that it never really went away.”
Research into alternative and “safe” uses of thalidomide has been ongoing since almost the moment the drug lost its licence – in 1964 it was used to treat a complication of leprosy. Today research has suggested it is an effective treatment for multiple myeloma; other studies are investigating its potential as a treatment for other forms of cancer.
Referring to the renewed interest in thalidomide, Rosie said: “It seems to me that everyone is drawn to it; that it’s still a wonder drug and they are going to be the ones who will be able to make it safe.
“There’s part of me which thinks if it can help others, then who am I to stop them from having it, but on the other hand, why is it that people continue to want to make money from thalidomide? Prior to it being re-licensed for multiple myeloma, the drug companies were still producing it.
“I don’t think we can ever use thalidomide safely. If it is to be used it shouldn’t be prescribed in weeks or month’s worth to keep in the cupboard where anyone could help themselves to it.
“I genuinely feel that if people – men and women – are to take it, then they also need to be using two forms of contraception. Women of childbearing age have to be absolutely aware and careful and have the full knowledge of its implications to make an informed decision about whether they take it or not.
“If it is to be used again, then it must be the drug of last resort rather than the drug of choice, which has so often been the case. The human side of me says who am I to say to another individual that you must not take this drug; the sensible side of me says if you have to take it, you must take all these precautions because if you don’t, you know the consequences.
“You can’t hate a drug – I’ve become used to the fact I’m a disabled person. I’ve embraced life wholeheartedly and, despite the circumstances, I’ve achieved an awful lot. Who knows whether I would have gone to university or been a feisty campaigner for disability rights, if I hadn’t been disabled?
“When you’re born a disabled person, you go one of two ways, you either sink and become bitter and twisted or you say there’s absolutely nothing you can do about it so you might as well make the most of life – that’s what I’ve chosen to do.
“I’ve never been of that nature to get bitter and twisted but there are some thalidomide people who are very angry, who have had a totally different life and upbringing to mine. They were put in homes. I can fully understand why they are angry and bitter but there are also others of us who have been fortunate to be brought up in warm, loving families where we have been encouraged to be as independent as possible, which is what my parents did.
“I have a great life – I’m married to a wonderful husband, I have a fantastic son and I work for a living.”
If thalidomide was one of the greatest medical tragedies of history, Rosie believes it has also helped to highlight and further disability rights in the UK.
“If society forgets the history of thalidomide, there’s a danger that it becomes an accident waiting to happen. But, as individuals, we have had a huge impact on society – we’ve done a lot of good for change for disabled people. Those of us who were brought up in families and included in society were quite often the forerunners for the change that has come about for disabled people.
“It’s true that thalidomide injured us but many went to a mainstream school when it was unheard of for a disabled person. A number of us have learned to drive adapted cars; we’ve got married and had babies of our own. Quite often we’ve been the protagonists for change and I believe we’ve had a positive impact on society.
“There’s a whole lot of reasons why thalidomide shouldn’t be forgotten. And, out of respect for the impact it had on our parents’ lives, on our lives, on our partners and siblings and children, I believe there should be a memorial plaque to mark that blip in history.”

A CAMPAIGN has been launched for a permanent memorial to the people and families affected by the thalidomide scandal.
It would also recognise the contribution many thalidomide-impaired people have made to society and the cause of disability rights.
It has been proposed the memorial plaque be sited in London and the dedication reads: “To all those thalidomide-impaired persons and their families who have been, and continue to be affected by the thalidomide tragedy.
“To remember the lives and achievements of thalidomide-impaired people in the UK and their contribution to society for positive change.
“To the memory of those children who did not survive to enjoy a full and rewarding life.
“To the memory of those parents, guardians and loved ones who gave so much in care, dedication and love.
“To remember all who worked so tirelessly in helping and supporting those who sought justice from this episode in history.
“To remember is to care.”
There are 456 thalidomide-impaired people in the UK; 31 live in Wales.
Rosie Moriarty-Simmonds, the driving force behind the campaign for the memorial, said: “Thalidomide affected the poorest of the poor and the richest of the rich – it cut across every boundary and social group.
“All we’re asking for is for a plaque the size of a television, with the inscription, in London – the seat of power and the site for the Olympics and Paralympics next year.
“But we feel frustrated that we’re coming up against so much red tape and a lack of willingness in the government to support it.
“To have this plaque would, in my mind, almost be like closure. At long last, this is the 50th anniversary of the drug being withdrawn and we would have a memorial plaque.”

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