Thalidomide at 50

Fifty years after thalidomide was introduced to the market, those who suffered the most from the drug's ill effects are still fighting for appropriate compensation and an apology from the State, writes RÓISÍN INGLE

FOR YEARS, Finola Cassidy was unaware that her stunted limbs were the result of thalidomide, an anti-morning sickness drug prescribed to her mother when she was pregnant. "As a child I used to tell myself stories that I'd shrunk in the wash or had a fall," says Cassidy, spokeswoman for the Irish Thalidomide Association. Her family only learned the truth after investigative reports by the Sunday Timesrevealed the full scale of the pharmaceutical scandal. "People including my parents started to realise that it happened because of this drug. That's when I found out that my mother, when she was pregnant with me, had taken one of these tablets. Just one."

Over lunch in Dublin to mark 50 years of thalidomide with journalist Olivia O’Leary and communications consultant Terry Prone, both supporters of the 32 Irish survivors of the thalidomide scandal, the women are trawling back over the history of the German manufactured drug, which was licensed for sale in Ireland in late 1959. Mothers across the world took the pills, which were marketed under a variety of names, on the recommendation of their doctors, pharmacists and gynaecologists. “The drug was approved by the State and it was viewed as the best thing ever to happen to pregnant mothers,” says Prone, while Cassidy explains how in Ireland 51,000 packets were sold or given away as free samples to “grateful mothers”.

It was only when the babies of thalidomide were born that gradually the horrible truth about the “wonder drug” began to emerge, with the pregnancies of 100,000 women around the world understood to have been affected by the tablets. Around 80 per cent of these suffered miscarriages or endured their babies dying at birth. The 10,000 babies who did survive suffered varying degrees of deformity while an estimated 5,000 of them died within the first year. Although it was sold across 46 countries, thalidomide was not allowed to be marketed in the US in the 1960s because of safety concerns, but this did not stop it being sold elsewhere. Subsequent research showed that the drug caused severe foetal damage by preventing the growth of new blood vessels in the developing embryo. The babies were born with shortened or absent limbs, stunted internal organs, hearing or vision problems.

In Ireland, the babies of thalidomide are now turning 50. The survivors have been celebrating their birthdays in the usual way, with surprise parties and family reunions and dinners with close friends. Many of them grew up believing that their various defects at birth meant they wouldn’t live to see adulthood, so from that perspective there is much to celebrate. However, in the absence of what they consider a “fair and equitable” compensation package, and with concerns for their future as their already overused bodies deteriorate further, they are worried for the future of their tiny community.

In the 1970s, under pressure from the parents and some passionate advocates in the medical world, the then minister for health Brendan Corish authorised the payment of a small lump sum to parents and a monthly disability payment. Neither of these provisions took into account the fact that the children might be alive to celebrate their 50th birthdays nor were they tested by the courts.

Last year, Mary Harney offered a further “take it or leave it” package of €2 million to be shared equally between the 32 survivors and a slight increase in the monthly payment. It contrasted negatively with the compensation package offered in the UK, which was accompanied by an official state apology to the survivors.

The thalidomiders rejected the deal and are now in negotiations with the current Minister for Health Dr James Reilly. Asked by The Irish Timesabout the possibility of a revised compensation deal and an apology, the minister said he had met with thalidomide representatives and was anxious to see what further measures could be taken. He then pointed to "the serious constraints placed on the resources available in the area of health due to Ireland's current economic difficulties". There was no reference to an apology.

The fight for an apology and a fair deal began decades ago. As a 23-year-old reporter for RTÉ, Olivia O’Leary’s first big job was an investigation into the thalidomide scandal in the early 1970s. Her sister had taken the drug but she was one of the lucky ones and her baby suffered no adverse affects. As part of the investigation, O’Leary travelled to Germany, where the manufacturer Chemie Grünenthal was putting up “a big fight” against the claims of parents.

Cassidy was a young girl at the time but she still remembers O’Leary coming to her home to interview her father, a civil servant who set up the original parents association.

“I vividly remember sitting on the bottom of the stairs while you interviewed my dad,” she tells O’Leary. “And then I was called in so you could interview me. The day before he had explained to me the truth about what had really happened to my arm. It was the first I’d ever heard of thalidomide.”

“I had such admiration for your Dad,” O’Leary tells Cassidy. “There was an atmosphere in Ireland at the time about any handicap to accept it as ‘the will of God’ . . . back then, the notion that you would stand up for your rights was embarrassing.”

O’Leary recalls how as part of the investigation she interviewed former president and then minister for health Erskine Childers, asking him why no public warning was given when, in late 1961, the devastating affects of the drug were discovered. German manufacturer Chemie Grünenthal withdrew the drug in December 1961 but it was available in Ireland for up to seven months afterwards. Instead of a warning campaign, the pills were simply quietly withdrawn with the result that mothers who had packets of the drug at home continued to take it. Around six of the 32 Irish thalidomiders are said to have been unnecessarily affected during this period.

“It was quite a fraught interview,” remembers O’Leary. “Childers told me that the decision was taken at the time not to put out a public warning on TV, radio and newspapers because it could have frightened pregnant women into possible miscarriage. So there were a number of cases that might have been prevented. I remember being absolutely astonished and saying to Childers, ‘You cannot be serious.’ He replied, ‘It wasn’t me, Miss O’Leary, it happened all these years ago, I am a good minister for health.’” O’Leary believes that although it was never stated officially, “the truth of matter” was probably that the government of the day was worried about women travelling for abortions.

Cassidy remembers being examined by a medical team from Germany who arrived in Dublin to ascertain how many Irish children were affected. “It was just horrendous and I think many of us have blocked it out . . . they obviously didn’t want to find too many children. Our parents were put under such pressure, organising affidavits signed by the prescribing doctors and obtaining prescriptional proof that they had taken the drug.” Those who couldn’t provide proof were left out, joining the ranks of the unknown number of “unacknowledged” thalidomiders.

As a teenager first reading about the thalidomide scandal, Terry Prone grew up citing Dr John O’Connell as one of her heroes. “The compensation in the 1970s happened because Dr O’Connell set fire to the government. He had public screaming matches about it. There was a sense with people of ‘oh, it was just an accident’, and it took years before he got them to realise they couldn’t just walk away from it, that sympathy wasn’t enough,” she says.

Unlike with the victims of the Hepatitis C scandal, the thalidomide survivors never went through a legal process to ascertain the State’s responsibility to them. “Nothing we get from the government is set in stone, none of it is statutory, it could be taken away in the next budget, which for the most vulnerable of us is really worrying, the legal route is definitely a consideration,” says Cassidy.

She describes the survivor’s disappointment at the “take it or leave it” package offered by Mary Harney, a one-off payment of €62,500 for each survivor and the minuscule increase to the monthly payment which worked out, depending on the disability, as between €1 and €8 euro a day.

“It was the first time in 35 years we had come out of the woodwork,” Cassidy says. “Harney had asked the State Claims Agency to review all the other international settlements. We tried to engage with the agency but 11 emails went unreturned. We couldn’t believe that after 35 years they hadn’t consulted us . . . if this happened to us in a car crash we would have recourse in the courts, we would have a hearing and a fair and equitable sum would be agreed. We shouldn’t have to work this hard to get fair treatment, people shouldn’t have to parade their injuries, they should be allowed to keep their privacy and their dignity.”

She believes the Harney deal did not make sense. “Why would I get the same amount as a person with no arms and legs? We didn’t understand this one size fits all approach . . . that money wouldn’t go very far for someone who needs 24 hour care. Our little group has to mind each other and take care of each other; if we don’t nobody else will. This will only be over when our worst affected are sorted out.”

Finola Cassidy

Mother-of-three Finola Cassidy confesses she “milked” her 50th birthday celebrations last month. “I did not think I would be able for a big party so I had a ‘sequence of events’ with people and family who mean everything to me,” she says.

There was a family reunion in Cobh, Co Cork, where she is originally from, including an afternoon sailing in the bay and a holiday in Italy. “I feel like we really should celebrate just being alive, we are the most tenacious bunch of people you could meet.”

Her own disability is a shortened left arm, with only four fingers on that hand. “The left arm is powerless, it does nothing, so it’s always been me doing everything with the one arm and hand, but the difficulties that have materialised in the last two or three years have been quite a shock to the system. I just can’t ignore the fact that I have physically deteriorated so much,” she says.

“I am still held by the hand by the most loving and supportive husband John . . . he is my left-hand man.”

As her children have grown up and gone off to college or work, the contribution made to her daily life by “my little helpers” has become more apparent. “They made my life easier in so many ways around the house, more than perhaps I gave them credit for,” she says.

As spokesperson for the Irish Thalidomide Association she is consumed by the campaign to achieve fair compensation for survivors. “I just hate that we have had to dig so deep to get what is only right and fair. We need acknowledgement by the Irish State that it was party to all of this wrong, that they licensed the drug and then didn’t withdraw it when it was found to be unsafe. They must apologise and they must back up that apology with a fair deal.”

Tommy Burbage

He is not a man for big celebrations but Tommy Burbage from Portarlington, Co Laois, a keen horseman, is delighted to have reached 50. Working in the family pub and grocery shop, he grew up thinking that his short arms meant a shorter lifespan.

“My understanding as a child of what happened to me was that it was related to spina bifida,” he says. “I thought if I made it to 21 I’d be lucky. There was a young girl up the road in a wheelchair and she died so I thought, that could be me. People didn’t expect us to last.” He has happy memories from his childhood but one incident with the medical profession stands out. He points to a scar on his right hand. “There was a little finger there that they took off when I was about 10 or 11 in rehab. I asked them why they took it off and do you know what the doctor said? ‘To make you more sociable looking.’”

He says he is “not a moaner . . . you have to get on with this life”, and attributes his positive attitude to the fact that he went to regular schools and was treated no differently to the rest of his family growing up. The worst thing about his disability was socialising as a young man and trying to meet girls. “You’d be in a disco and know that a woman was going to look at your arms and not be interested,” he says. Six years ago he met a woman who shared his passion for horses and they celebrated their first wedding anniversary recently.

“So that little hurdle is over. It was the main stumbling block in life for me,” he says. “I just get on with life, the best I can. I am probably not looking forward to getting old. I suppose nobody does. I am a bit scared to be honest . . . I don’t ride the horses any more, I used to, but now I’d be afraid of breaking a leg and how that would limit me, using crutches with these arms. You’d feel more vulnerable.” Is he happy at 50? “What can I say? Amn’t I lucky to have gotten this far?”

Martin Murphy and his mum, Peggy

Cork woman Peggy Murphy suffered with nausea throughout her pregnancy with her third child, Martin. In the fifth month, she finally told her gynaecologist and he informed her of "this wonderful tablet . . . he really thought he was doing me a favour". When she went to the pharmacy she was astonished to discover the pills cost a shilling each. "I was supposed to get 24 but I could only afford 12. They told me afterwards that if I'd taken 24, Martin would have died," she says.

When Martin was born he needed oxygen and in addition to facial paralysis and a congenital throat defect it was found that he had a hole where his left ear should have been. This was common of the babies born to women who had taken the drug later in pregnancy. Martin spent several years in St Joseph's school for the deaf in Cabra. "It was heartbreaking," she says. "I suppose I am still angry. I think about the life he should have had, we've never heard him talk and he's never heard our voices. His whole life was ruined, it was traumatising."

Using sign language to talk to his sister Norma, DIY expert Martin says the compensation package was "too small" and "I'd like them to say sorry . . . they should say sorry". He signs a thumbs up to indicate that he enjoyed the surprise 50th birthday his family threw for him last month. "I've been caring for Martin for 50 years," says his mother. "He is an independent person but I help him with the things he can't do. I just want to be sure that when he gets older he will have enough to make sure he gets the care he needs. I don't want to worry any more."

Jacqui Browne

Looking at Jacqui Browne, grinning as she enjoys a lunch of fresh crab claws in her waterside home of Fenit, Co Tipperary, the affects of thalidomide are not immediately apparent. "It's what you don't see that's more significant," she says. "An awful lot of parts of my body are undeveloped, the small canals and nerve pathways." As a growing teenager, she developed problems with her hips and back. Now there are bony growths all over her body. She has already travelled to Germany for extensive surgery – she estimates that she has spent €50,000 on travel and medical expenses in the last 30 years – and will need further operations in the years to come.

"It's like osteoarthritis, there are days when I can hardly move, it's the pits," she says. As a sailor she used to be "pretty sharp" and took part in a round-the-world yacht race. "It's not about winning any more, it can't be. It's for pleasure now. I can't do certain manoeuvres, I can't pull my own boat up the slip any more."

She only got out sailing once this year, as a passenger. Walking her dog is now a chore. "I think what is upsetting for people is that there is no one person we can ring up, no medical team we can approach that offers a holistic approach and that understands our unique issues."

A former bank worker and disability consultant she describes herself as a "happy, optimistic" person. "For most of my life I have been a very independent person. I have contributed every bit of me that I can to my country. I have worked and paid taxes and all I am looking for is a bit of support."

Thalidomide is still on the market. The drug is fully regulated and has been offered to Irish cancer sufferers as it has been proven to help shrink tumours. In developing countries it is used to alleviate the painful lesions associated with leprosy. In 1988, it gained approval in US as an extremely effective cure for erythema nodosum leprosum, an inflammatory complication of leprosy that results in painful skin lesions on the arms and legs and face.

Today in the UK, Thalidomide has been approved for use in treating myeloma, a cancer that hits bone marrow.