Ireland’s thalidomide survivors: ‘The State is only waiting for us to die’

People affected by drug linked to birth defects have called for ‘an apology and a fair deal’

Thalidomide survivor Maggie Woods lays a white rose outside the Dáil to mark the 60th anniversary of the withdrawal of the drug from international markets in November 1961.  Photograph: Fran Veale/Julien Behal Photography

Thalidomide survivor Maggie Woods lays a white rose outside the Dáil to mark the 60th anniversary of the withdrawal of the drug from international markets in November 1961. Photograph: Fran Veale/Julien Behal Photography

 

“We are now 60 years of age. As the years go on we are left with the impression that the State is only waiting for us to die, without any intention of meeting with us or coming up with a fair and just settlement.” – Jacqui Browne, Irish thalidomide survivor.

Sixty years ago, on November 26th, 1961, a drug linked to major birth defects in pregnancy was withdrawn from global markets. Thalidomide was prescribed to pregnant women in the 1950s and 1960s as a treatment for morning sickness, but was removed from world markets in 1961. An investigation by RTÉ PrimeTime in 2013, however, revealed that thalidomide was not removed from the Irish market until nine months later in 1962.

There are approximately 40 thalidomide survivors in Ireland, 29 of whom are in receipt of an ex-gratia payment from the Government.

This year, on Thursday, November 25th, a group of survivors and members of the Irish Thalidomide Association (ITA) gathered outside the Dáil with 60 white roses, one for every year that has passed since the drug was withdrawn worldwide. They gathered, they said, not only to mark the 60th anniversary of the withdrawal of the drug, but also to acknowledge those who have died and to highlight that Ireland’s inaction on a timely withdrawal of the drug lead to more babies being needlessly affected.

One of the worst medical disasters of our time, thalidomide led to horrific deformities and deaths in thousands of babies across the world. The children of women who took the drug in pregnancy were born without limbs, or shortened limbs, with hearing and vision impairments, and injuries to internal organs.

Thalidomide survivors Maggie Woods (centre), Geraldine Kilduff, Jacqui Browne and Tommy Burbage protesting outside the Dail. Photograph: Fran Veale/Julien Behal Photography
Thalidomide survivors Maggie Woods (centre), Geraldine Kilduff, Jacqui Browne and Tommy Burbage protesting outside the Dail. Photograph: Fran Veale/Julien Behal Photography

According to Finola Cassidy, secretary and spokeswoman for the ITA , it is believed that worldwide 100,000 children were affected. Of these, 90,000 died in utero or at birth. Of the 10,000 that were born, approximately 5,000 died in their first year of life.

According to the Thalidomide Trust in the UK, there are fewer than 3,000 thalidomide survivors worldwide alive today.

In a press statement to mark the 60th anniversary of the global withdrawal of the drug, the ITA said: “the Irish State licensed the thalidomide drug for use in Ireland in the late 1950s but failed utterly to effectively withdraw it in November 1961 when it was found to cause catastrophic injuries. Indeed, there is no evidence of a complete recall of the drug in Ireland. The State’s failure to publicly announce the withdrawal of thalidomide or account for any supplies sitting in homes around Ireland resulted in other needlessly affected babies being born up to and including 1964, three years after the international withdrawal date. It is time, 60 years later, for an apology and a fair deal for those of us who are still waiting and alive today.”

German apology

Adding to the pressure on the Irish Government, last week the German family behind the drug apologised to those damaged by its product.

Sold under the trade name Contergan, the drug was manufactured in Germany by the family-owned Grünenthal company and sold under licence in 70 countries worldwide. “We cannot change what happened . . . the Contergan tragedy is part of our company history and we regret deeply the far-reaching consequences,” said Dr Michael Wirtz, chief executive of Grünenthal and son of the company founder.

However, ITA chairman John Stack said the “belated apology” would ring “somewhat hollow” to Irish survivors given Grünenthal was involved in ongoing litigation in Ireland.

Cassidy said that the ITA wanted an apology from the Irish State and “a fair and equitable compensation”.

“We need them to acknowledge the wrong and apologise,” she said.

She said an apology would be important for both thalidomide survivors and their parents. There were about six mothers still alive today, she said, who would now be in their eighties and nineties who “just want to be told it wasn’t their fault”.

‘Isolation was tough’

As the 60th anniversary of the withdrawal of thalidomide was being marked worldwide, Jacqui Browne a thalidomide survivor from Fenit in Co Kerry was celebrating her 60th birthday.

One of five children, Browne described her childhood as “isolated”. The damage done by thalidomide to her young body meant she was forced to spend months in hospitals in Dublin and Cork, on her own and far from her family. “Many times as a child I felt that I didn’t grow up with my siblings,” she said. “That isolation was tough for me but also tough for my parents and my other siblings. So that was a big . . . psychological and emotional impact,” she added.

Browne, a successful and passionate advocate for people living with disabilities in Ireland, has undergone 40 surgeries in her 60 years and lives with bilateral hearing impairment and a number of other medical conditions.

Jacqui Browne: ‘We are very keen that we have an apology to not only us, but for the parents of Thalidomiders.’ Photograph: Nick Bradshaw
Jacqui Browne: ‘We are very keen that we have an apology to not only us, but for the parents of thalidomiders.’ Photograph: Nick Bradshaw

Browne said her mother was left with “a huge sense of guilt and remorse” that she had taken the drug in pregnancy. She added that her mother was a fantastic and passionate advocate for children born with thalidomide and their parents.

Her mother, she said, never treated her any differently from her siblings and she was “very much part of the rough and tumble of family life” which was important. “I tried my best to look at the glass half full rather then the glass half empty. It has also made me a strong and independent woman and I’m pretty resilient.”

Browne said her reasons for marking the 60th anniversary of the global withdrawal of thalidomide outside the Dáil last month were to remind politicians that “we are still here, not to forget about us”.

“We are now in our 60s and we are ageing at a much more rapid rate than our chronological age. Many of us are presenting with conditions or issues of a 75 or 80 year old and that has a big impact.”

Some of our members are very keen that we have an apology to not only us, but for the parents of thalidomiders

She added that she has a lot more chronic pain, was slowing down a lot and many of the chores of daily life were getting increasingly difficult. “We obviously want recognition, some of our members are very keen that we have an apology to not only us, but for the parents of thalidomiders. We have to acknowledge that many of our parents have passed away but it would be very important.”

She added that thalidomide survivors have been in discussions for a number of years with the State, and were looking for a fair and just settlement of a number of issues. “We are now 60 years of age, as the years go on we are left with the impression that the State is only waiting for us to die without any intention of meeting with us or coming up with a fair and just settlement,” she said.

Thalidomide today

Neil Vargesson, professor in developmental biology at the University of Aberdeen in Scotland is an expert in the effects of thalidomide. His research focuses on unraveling the mechanisms of thalidomide, how it caused malformation, and how it can be used safely to potentially treat other conditions.

To mark the 60th anniversary of the drug’s withdrawal, Prof Vargesson spoke at an online event, organised by TechFest Aberdeen in Scotland, entitled thalidomide 60 years on: history, withdrawal, renaissance and mechanisms.

Prof Vargesson explained that while many survivors had shortened limbs or focamelia, they also had a range of other issues such as damage to the ears, eyes, face, genitals, internal organs such as the kidneys, reproductive organs and the cardiovascular system. “In fact most tissues are sensitive to thalidomide and no two thalidomide survivors are identical,” he explained.

Finola Cassidy, secretary and spokeswoman for the Irish Thalidomide Association: ‘We need them to acknowledge the wrong and apologise.’ Photograph: Nick Bradshaw
Finola Cassidy, secretary and spokeswoman for the Irish Thalidomide Association: ‘We need them to acknowledge the wrong and apologise.’ Photograph: Nick Bradshaw

Prof Vargesson said the tragedy completely changed the way drugs were tested, and gave birth to the field of toxicology. He explained that thalidomide survivors were now in their late 50s and early 60s and were all suffering from early onset age-related disorders such as arthritis.

According to Prof Vargesson, thalidomide is used to treat a number of conditions such as leprosy. However, its use is highly restricted and patients must be on contraception and take regular tests to ensure they are not pregnant when taking the drug.

Its anti-inflammatory properties meant that thalidomide was even examined for use against Covid-19 and swine flu in 2009, he added. When used safely thalidomide is very effective, he said.

Prof Vargesson also explained that there was now a new generation of thalidomide survivors emerging in Brazil due to leprosy being endemic in the population. People are sharing thalidomide without realising the devastating impact it has on pregnancy.