Irish Thalidomide survivors respond to letter from Government leaders

The Irish Thalidomide Association (ITA) held a Press Conference today to officially respond to a letter that their members received last week from the three leaders in Government: The Taoiseach Simon Harris, The Tánaiste Micheál Martin and Eamon Ryan, former leader of the Green Party.

A spokesperson for the Irish Thalidomide Association had said last week that members were “devastated” and “hurt” by the Government’s statement earlier in the week.

Last Tuesday (9th), Taoiseach Simon Harris, Tánaiste Micheál Martin and Minister for Children Roderic O’Gorman said they wanted to “express sympathy with the survivors and families” of thalidomide.

The three coalition leaders also said they were “sorry for all you have endured”, and outlined a number of supports including free travel passes as well as “enhanced” health, social care and independent living supports.

Last weekend members of the Irish Thalidomide Association met for hours to discuss the letter.

The members were unequivocal in their rejection of the letter.

Survivors of the thalidomide morning sickness drug, which caused significant side effects in newborn babies in the 1950s and 1960s, say that 60 years on they are still seeking justice.

“This letter is not an apology,” a spokesperson said.

“An expression of general regret blaming the ‘regulatory standards of the time’ is not an apology.

“Any expression of sympathy is not an apology.

“Saying that mothers of Thalidomide babies were not to blame is not an apology.

“Excluding any reference to our ‘unacknowledged’ survivors is not an apology.

“We are the survivors of the biggest medical tragedy the world has ever witnessed.

“Some of our group sadly passed away and have the lost chance of recognition of the wrong done to them.

“Sixty years on, we are still seeking justice for both recognised survivors and those whom we know have been damaged by thalidomide but have not yet been officially recognised by the State or the German manufacturers of thalidomide.

“It is unforgivable that our members who remain ‘unacknowledged’ as thalidomide survivors are still excluded to this day.

“They have never been recognised, never helped and despite 15 years of campaigning remain completely ignored in the letter from the three leaders in Government.”

The ITA journey started with our parent’s campaign for justice in the 1970’s when families were already dealing with a decade of catastrophic disabilities endured by their children.

Thirteen Taoisigh have abandoned the Thalidomide Mothers of Ireland and their catastrophically disabled children.

Thalidomide, even just one tablet, caused malformations to limbs, ears and internal organs.

While the letter from the three leaders included many expressions of regret and sympathy, ITA members say it was not an apology.

“It looked like an apology,” they said in a statement.

“It sounded like an apology.

“Many news outlets interpreted it as an apology.

“It was not an apology.

“An apology must include an acceptance that the State acted wrongly in the past.

“There was no such acceptance of wrong in the letter we received.

“This, seeming apology, caused unfathomable hurt and anger amongst our members.

“We believe we are owed an apology for the following reasons:

“THE FAILURE TO RECALL THALIDOMIDE: In 1961, the then government refused to recall thalidomide in line with the international withdrawal of the drug. The state took a very conservative and paternalistic approach towards women in Ireland at the time. This is very evident by the lack of any nationwide appeal or campaign to advise or warn women about the internationally known dangers of the Thalidomide drug in 1961.

“THE INADEQUATE REGULATION OF MEDICATIONS: The State failed to properly regulate the thalidomide drug unlike other nations including the USA although it had the statutory tools to do so.

“THE FAILURE TO BRING THE DEAL MADE WITH THE STATE AND GRUNENTHAL IN THE 1970’s BEFORE THE HIGH COURT: The only reasons for not putting the awards before the High Court were either the Government were hiding their culpability in not making a public announcement for the removal of the drug in 1961 or they knew the deal made to support children with thalidomide was inadequate and would not be ruled on. In 1975, when we were minors, under the age of 18 years of age, our parents were promised that all our healthcare and personal support needs, including equipment etc would be provided for by the Irish state for our lifetime. These promises were never ruled upon by the High Court, as is the legal norm for minors. We are the only case we know of where this failed to occur.

“THE FAILURE TO PUT IN PLACE A HEALTH CARE PACKAGE IN 1975: As part of the package partially developed in 1975, the State had promised to develop a comprehensive health and social care package for children affected by thalidomide to be in place for the rest of their lives. The health care package announced last week is the one they were supposed to develop almost 50 years ago. Due to the lack of such a package being in existence until now some of our members have had unnecessary deteriorations in their health and functioning.

“THE FAILURE TO KEEP UP TO DATE WITH THE DIAGNOSTIC CRITERIA FOR THALIDOMIDE WHICH HAVE CHANGED. A number of people were not acknowledged on the basis of diagnostic criteria created in the 1960/70’s. However, with advancing medical knowledge these criteria have changed. People who are still fighting for recognition have been diagnosed by medical experts as having thalidomide related disability under these new criteria. The Government should have kept up to date on this.

“The State Claims Agency report “Compensation for Thalidomide Survivors” in April 2010 was undertaken without any consultation, discussion, or involvement whatsoever with thalidomide survivors in Ireland. This report never disclosed all the true facts or our lived reality; it has no credibility, yet it appears to dominate the States thinking and strategy to this day. Who or what is the State trying to protect still in 2024?

“Furthermore, this flawed report ignored the state’s failure to withdraw thalidomide at all or in a timely manner. It also ignored the state’s obligation – and every child’s fundamental right – to have a High Court Judge examine any offer made to a minor.

“This government and the State need to own up to the actions of the past and fix the historical and continuing injustice towards thalidomide survivors in Ireland. The Irish state needs to acknowledge its failures and omissions. Even at this late stage it needs to cherish us – the acknowledged and unacknowledged survivors alike.

“This Government and this State needs to give all Irish thalidomide survivors, their mothers both living and deceased, the respect and decency of a Dáil apology to acknowledge once and for all, that this was the fault of the State, no one else.”

The Association also pointed out that the state left the drug on pharmacy shelves long after it knew it caused catastrophic damage in utero, at birth and beyond.

Instead of offering a public apology from the Taoiseach to the surviving mothers, instead of providing a comprehensive package of compensation, the ITA says its members are shocked by “the Government making a big deal of a health care package and a free travel pass, which were already promised to survivors in the 1975 but never delivered upon.”

The ITA also say that the expression of sympathy from the three leaders was in stark contrast to the apology offered by the Prime Minister of Australia to those affected by thalidomide under the watch of his nation.

This apology was devised in collaboration with those affected by thalidomide in Australia, To quote: “Today, on behalf of the people of Australia, our government and this parliament offer a full, unreserved and overdue apology to all thalidomide survivors, their families, loved ones and carers…This apology takes in one of the darkest chapters in Australia’s medical history when expectant mothers, through no fault of their own, were exposed to a drug with devastating effects that were realised far too late.” This is a proper apology.

Sandra Dunne, an Unacknowledged Survivor, responded to Simon Harris.

“I am so upset, hurt and angry that it is only 3 months since Taoiseach Simon Harris extended his ‘hand of sympathy’ on my dear mother ‘Elizabeth Sweeneys’ sad passing where she was referred to in the Dail as being the Mother of one of our thalidomide survivors, yet he still fails to recognize that my injuries are as a result of thalidomide.

“The regrets, sympathy & health package offered to Acknowledged Thalidomide survivors is marred by exclusion, omitting the 12 Unacknowledged Survivors who suffered similarly devastating consequences.

“This  selective approach is not only insensitive but also denies us the recognition and support we deserve, perpetuating the harm of this tragedy.