“My blood runs cold,” says Finola Cassidy, referring to the effect of reading material in the National Archives of Ireland relevant to the disabilities she and others live with because in the late 1950s and early 1960s their mothers took thalidomide, not knowing the potential consequences.
Thalidomide was developed in Germany in the 50s as a sedative or tranquilliser but was later widely promoted as a drug to treat morning sickness during pregnancy. It was withdrawn from most markets in 1961 following widespread evidence of its link to birth defects, but was still sold in Ireland until 1964.
Twelve years ago, more than 25 of those affected took High Court proceedings against the German thalidomide producer, Grünenthal GmbH, its distributor in Ireland, TP Whelehan, and State parties, who all deny the claims against them.
The cases have gone nowhere. Meanwhile the plaintiffs age, some of them die, and the number of parents still alive is naturally dwindling. “There are a handful of mothers left,” says Cassidy.
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Among the issues holding up the proceedings is discovery, the right of a plaintiff to access material held by the other side. A discovery order made against the defendants would involve going through more than 90 million documents, take years, and cost almost €170 million, the court was told by the State in 2019.
Little has happened since. Meanwhile, Cassidy has been conducting her own research in the National Archives. The core files she wants to see appear not to have been transferred to the archive yet.
But she has come across files in respect of other Grünenthal drugs where the company was negotiating their distribution with State departments.
“The same parties, working together … we never knew there was a 10-year relationship between those entities on other products.”
One document she found is dated September 1956 and is concerned with the sale of Grünenthal products Paratebin and Prevecillin in the Republic. The manufacture and packaging of the products, the company told the Department of Health then, was “directed and controlled by Mr H Mückter” and a second company chemist.
Heinrich Mückter was a Nazi scientist. Coming across his name in the National Archives gave Cassidy a shock, she says.
“I was always aware of his involvement in the development of thalidomide. I just never expected to see [his name] in Irish State Department of Health files.”
Mückter, who died in 1987, conducted research in Poland during the second World War on a possible typhus vaccine, carrying out experiments on concentration-camp inmates. He narrowly escaped being jailed when the war ended.
Instead, he was employed as head of research at Grünenthal as it transformed itself from a soap maker into a pharmaceutical company. The over-the-counter morning sickness pills it developed, that included thalidomide as an ingredient, became a global product from the late 1950s, with consumers being assured of the products’ safety.
Among the other documents Cassidy has seen in the archives is a letter dated June 20th, 1962 sent by the then acting chief medical adviser in the Department of Health to regional medical officers as the State sought to assess the extent of the damage done.
“You are no doubt aware that certain drugs have recently come under suspicion in connection with increases in the incidence of certain types of neonatal deformities,” the letter states.
“It is apparently widely accepted that where these drugs are taken during early pregnancy there is a distinct risk of severe damage to the developing foetus with resulting distressing deformity, especially of the limbs, in the child.”
Agents for the manufacturers of Softenon and other products containing thalidomide withdrew the products in Ireland in January 1962 by circularising doctors and chemists, the letter states.
“There is a possibility, however, that there may still be small quantities of these drugs, in one form or another, which have not been returned or destroyed.
“I would, therefore, be obliged if you could contact all doctors in your area drawing attention to the matter and asking them to ensure the non-use of any supply they may still be holding.”
The letter continues: “ ... you may think it advisable to ask them, if appropriate, to secure the return of any of the drug which they may suspect to be still in the hands of patients to whom it has been prescribed in the past”.
[ Thalidomide survivors ‘devastated and so hurt’ by Government statement this weekOpens in new window ]
Finally, the latter states: “It would be helpful if you were able, by means of discreet enquiries amongst your medical colleagues, to find out whether and to what extent infant deformities, conceivably attributable to the use of these drugs, may have been noted in your area.”
The doctors were asked to consult local records and convey the results of their inquiries to the acting chief medical officer.
“The records available in respect of births in any maternity accommodation in your area or the information on clinical record cards compiled under the Mother and Child Scheme may be of assistance in this connection.
“Perhaps you would let me know, as soon as you can conveniently do so, what the situation is with you as regards the various aspects of the matter mentioned in this letter.”
Cassidy says: “It is almost, make no fuss, do it behind closed doors. There is no alarm.”
Cassidy turned 64 in October. She was born in Cobh, Co Cork, in 1961, her mother having taken the Grünenthal product Softenon during her pregnancy. Harmless for most adult users, it can have a catastrophic effect on infants in the womb. Shortened and absent limbs, malformation of hands and digits, and in some cases damage to the brain, internal organs and skeleton, are among the potential catastrophic effects of thalidomide.
It is estimated that tens of thousands of children were affected globally, with most dying in the womb or soon after birth. Many of those who survived did not make it out of childhood.
Cassidy was born with a foreshortened arm and damaged hand, among other issues. There are currently about 40 thalidomide survivors in the Republic whose development was affected in the womb because their mothers took the product.
“It’s a diminishing group. We were never expected to live this long,” Cassidy notes.
As the long-time spokesperson for the Irish Thalidomide Association, she is anxious to stress that others have much more debilitating deformities than her.
But for everyone involved, there is the burden of new health problems linked to thalidomide emerging as their bodies age. “That can be very hard to cope with,” she says.
The drug was withdrawn by Grünenthal in November 1961, though, Cassidy says, the Irish State did not immediately raise the alarm. She was born in October 1961. John Stack, chairman of the association and the youngest Irish thalidomide survivor, was born in January 1963.
“Thalidomide products remained in medicine cabinets in homes and even on pharmacy shelves for years,” Cassidy says.
A compensation and support scheme was agreed by the government in the early 1970s and documentation arising from operating the scheme in part explains the huge volume of material referred to in respect of the High Court discovery order.
At the time the compensation scheme was established, a board set up to examine the matter estimated there were 34 affected children in Ireland.
“Parents were asked to prove they had taken the drug,” says Cassidy.
Her father was able to produce receipts for Softenon from a local pharmacy that happened to still be in the family home years later. Other parents were not so fortunate.
Little then happened for decades until, approximately 20 years ago, the plight of survivors affected by thalidomide featured on RTÉ’s Liveline, and other media organisations also highlighted their plight. New victims came forward, and the association was formed to press for greater support for those affected.
There are currently approximately 40 affected people in the State including, Cassidy says, more than 10 who are “unacknowledged” survivors, having never been officially recognised as such. The group wants a new compensation scheme, greater supports as the survivors age, and a State apology.
A “facilitation process” was set up last year, with Paul Gilligan, a retired judge of the Court of Appeal, as the independent facilitator. More supports have been announced, but the association is unhappy with the pace of progress.
“What we need is a system where we are dealing with people who can make a decision,” says Cassidy.
The association met a group of approximately 40 TDs and Senators in Leinster House on Wednesday of last week, marking 64 years since thalidomide’s international withdrawal.
In October, the association met Taoiseach Micheál Martin and Tánaiste Simon Harris.
Afterwards the group was more hopeful about the resolution process which, Cassidy says, had reached an “impasse”. The parties are due to meet again on Tuesday.
