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25 March 2010 Edition

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From injury to insult - the tragedy of Thalidomide

Spokesperson for the Irish Thalidomide Association Finola Cassidy

Spokesperson for the Irish Thalidomide Association Finola Cassidy


Thalidomide was a drug developed in Germany in the late 1950s by a company called Chemie Grünenthal and it was taken by pregnant women as, amongst its effects, it was said to help relieve ‘morning sickness’. In 1959 the drug went on sale in Ireland but just two years later it was identified as the cause of disabilities amongst babies born to women who took the drug. The drug could be bought over the counter in Ireland and it was not withdrawn here until seven months after the threat it posed was identified.
“I’m probably one of the luckier survivors,” spokesperson for the Irish Thalidomide Association (ITA) Finola Cassidy says, “because I’m not as badly affected as most. But I represent a certain cohort of the survivors who, while not the worst affected, are now suffering an accelerated increase in mobility and pain issues.”
In 1974 a fund was set up for Irish survivors of the tragedy. They received minuscule lump sums, averaging about €4,000, along with monthly payments, which in 2009, ranged between €514 and €1,109. “When we were twelve-year-old children”, Finola explains, “our parents eventually secured an arrangement with the Department of Health. Basically it was a ‘take it or leave it’ arrangement that our parents accepted on our behalf. After 35 years we have not been back to the table. People hadn’t applied for things because they’ve genuinely been so independent and tried to get on as best they can.”
Now in middle age, these people are not able to cope so well and of course, one of the other worrying factors is that nobody can predict the future for this group, as there is no precedent and therefore no clear prognosis on their long-term future. “Originally, and many of our members can remember it, the doctors at the time were saying, ‘well they won’t survive to 20’ or they’ll never do this, that or the other. So there was no plan for our middle age. Now what’s scaring us going forward is that there is no plan for our old age. If you take the physical disability of the shortened limbs, how are our arms going manage all the overuse? Life is getting scary.”
Pain management is a big problem for the survivors. “The onslaught of pain and mobility issues that crept up on us in our 40s took us by surprise,” says Finola. “As I said, I was probably one of the luckier ones as I led a fairly normal life.” Nevertheless there were times when people were hurtful, if not insulting.  “Of course, you will always have people in all parts of your life who are mean. Some people have no filters; they just come out with it and some of our people were sent away to institutions because the ordinary schools in the ‘60s hadn’t the facilities. But most of the time you were surrounded by a very loving family and had extremely good friends who will have stood by you all of your life and known the value of you as a person.”
In the Irish context,Chemie Grünenthal, the developer of thalidomide, was the only tester of the drug. “The drug was directly imported into Ireland through the Department of Health, which back in 1959 had sole responsibility for the licensing of drugs. It was after the thalidomide debacle that the Irish Drugs Board was set up to keep a better eye on the licensing of drugs. So they relied on the testing and reporting of the pharmaceutical company. We want to find out who made the decision to licence the drug here and why was that decision made. How did the mechanism of that work? We consider that it was wrong for them to licence this drug without it being properly tested. Basic tests were done by the company but the drug was never tested on pregnant animals. As a result, nobody picked up on the damage done until about two years after it was originally used in 1959.  Then, two doctors, one a German and the other an Australian, began to realise that there was a serious increase in birth deformities and the level of deformity involved.”
There is also the issue of the people who did not survive. These were the stillborn and babies lost through miscarriages. The two doctors began to try to figure out what was the common denominator involved and they came up with thalidomide.
The ITA has a number of basic demands, articulated by Finola:
“To acknowledge the wrong that they caused. It was wrong to licence this drug in 1959 in Ireland. The biggest controversy for Irish people affected by thalidomide is why the drug was left on the market seven months after the government was warned about the dangers. It was also wrong not to publicly issue the warnings. Many thalidomide survivors would not be disabled today if that warning had been acted on.
“An apology to survivors and their families and to all those who have not survived. We are looking at an acknowledged 32 survivors. We know in Ireland that many people have not survived; they died in miscarriage.
“To give us voluntary disclosure of documents pertaining to Thalidomide, going back to the 1950s in Ireland. After 50 years, what could they be hiding?
“When all that is done, we need to sit down with them to plan a provision of care for the future.”
Finola told me that, at a stage in their lives when serious deterioration is happening to their bodies, the last thing they need to have to do is fight. Sinn Féin has made interventions on the issue in the Dáil and Finola has a lot of praise for Caoimhghín Ó Caoláin. “He attended an Oireachtas meeting a couple of weeks ago,” she says, “and I am very impressed with the grasp he had on the whole issue.”
Speaking after an Oireachtas Health & Children Committee on 23 February, which met a delegation of thalidomide survivors, Ó Caoláin called for a full apology and appropriate material support for the survivors.
“A succession of governments has been responsible and have failed, on behalf of the collective of the Irish people, to offer properly a full apology to everyone concerned”, he said. The TD went on to call for “a clear indication of intent on the State’s part to meet the needs of the sufferers in order that they are guaranteed a quality of life commensurate with their needs and reasonable expectations”.
Last month Health Minister Michael McGimpsey announced a £1.1 million compensation package for the 18 thalidomide survivors in the North.

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