In the early 1960s, when Lance Fletcher’s mother Carol was pregnant with him, she took Thalidomide for relief from morning sickness… Like so many other expectant mother’s living in Australia and New Zealand at the time Carol was completely unaware of the dire and sometimes fatal side effects of the drug, which subsequently led to Lance being born with no ears plus an array of other physical disabilities and internal issues…
Luckily, Lance’s father Max read an article in the Australian Women’s Weekly relating to a paper in The Lancet written by Dr William McBride, which described the dangers of taking Thalidomide. Max told Carol about the McBride article, and she immediately stopped taking Thalidomide.
Unfortunately for Lance and his family, the serious damage was already done, leaving him to spend a lifetime dealing with the physical ailments caused by Thalidomide.
In 2008 Lance’s wife and co-founder of Thalidomide Australia Inc. (TAI), Lesley, embarked upon a mission to seek out the remaining Thalidomide survivors in Australia and New Zealand, and subsequently a wealthy company was approached to act as a benefactor to make ex gratia payments to the survivors … Lesley’s ardent and intricate research campaign led to learning the identities of 45 Australians and New Zealanders who have, against the odds, survived the brutal effects of Thalidomide…
Lance: Tell us about your experience with Thalidomide?
From an early age, I was aware of the fact that I was different. I had been born with no ears and a hole in my heart. I had minimal hearing in my left ear, but can hear enough with my right ear to get by. My eyes were also affected, and I had to wear glasses held on with elastic bands.
As a child, we used to have an annual get-together with other Sydney-based Thalidomide Survivors at St Ives Showground. Most of the other children attending had been more severely affected than myself – many having no arms and/or no legs. Where I found comfort in the company of children like myself, my parents found it very confronting. They were almost embarrassed by the fact that I was outwardly less affected. Life at school was difficult at best. I was an easy target for bullies, both students and teachers alike.
When I was 8, my parents sought prosthetics, as did many of the other parents. Some Australian survivors went to England for prosthetic arms and legs. Not being as affluent as some of the other families, we were referred to a doctor in Melbourne.
Upon arrival at the Royal Melbourne Hospital, my parents’ hopes were quickly dashed when they were informed that the proposed plastic ears would not hold the weight of my very ‘attractive’, thick rimmed Clark Kent glasses. From here, we were referred to a plastic surgeon, who having never seen a Thalidomide child before, essentially used me as a guinea pig – attempting to build ears from my own body parts, including rib cartilage and skin grafts.
I had three, six-hour operations – the recovery was long, and the outcome hopeless. The thought of further experimental surgery left me traumatised, and I told my parents I did not want to continue. Fortunately, they listened, and I subsequently wore my hair long until my late 30s, when I met Lesley. She gently coerced me to cut my hair shorter and to be proud of who I am. Inch by inch, it came off, until one day I bit the bullet and arrived home with very short back and sides. She liked the haircut so much, she married me.
I was originally married to Karen, and when we were expecting our first child, my grandmother said, “The baby can’t be Lance’s; he can’t have babies because of Thalidomide”. My grandmother was referring to what she and many others had been told, and for many Thalidomide survivors, the inability to conceive children was an unwelcome reality. We were very fortunate to have three healthy children: two sons, Bradley and Tristan, and a daughter, Tahlia.
As I age, damage to my central nervous system and gastrointestinal tract is becoming increasingly apparent. I have facial nerve damage and am missing some of my internal organs. I endure Trigeminal Neuralgia-like symptoms and severe reflux daily, but you learn to live with it.
Lance: As can happen to victims of Thalidomide, you were born with a hole in your heart – yet your father encouraged you to play soccer, which helped the hole to heal. Tell us about this.
The numerous doctors I visited as a young boy were very keen to operate to correct a heart murmur. They were also concerned about the hole in my heart. My father felt I had been through enough surgically and decided I should play soccer. Despite much of my first season spent wrapped around my father’s legs as he tried to referee, his persistence paid off. I went on to become a reasonable soccer player, and over time the hole healed itself – but I have always struggled with my fitness.
Lance: You wrote to me in July telling me of a recent trip to London, where you attended the conference recognising the 50th anniversary since the banning of the drug Thalidomide. What took place at the conference?
The conference in London, titled Thalidomide 50 Years On, was a time to celebrate the survival against all the odds of Thalidomiders everywhere. It was a time to reflect on the thousands who hadn’t made it, to acknowledge those who had helped us along the way, and to mark the 50th anniversary of the drug being withdrawn from sale around the world. The conference was primarily about the UK Thalidomide Society and what they have achieved and was well attended by survivors from Australia, New Zealand, Japan, Germany, Spain, the Netherlands, USA, Canada, Brazil, Ireland, Denmark, Sweden and Norway, as well as the UK.
There were several keynote speakers, including:
• Professor Janet McCredie, an Australian Radiographer who was never fully credited for her role in discovering the link between Thalidomide and birth defects. Janet is highly respected and loved by surviving Thalidomiders around the world and has devoted much of her life to Thalidomide research;
• Sir Harold Evans, the editor of the British Sunday Times for 14 years, whose pursuit of the drug companies responsible for producing Thalidomide forced the government of the day to change laws prohibiting the reporting of civil cases.
Two minutes’ silence was also held to remember the eight to nine thousand Thalidomiders who weren’t as lucky as we were (although these numbers are now being questioned, regarded as too low, as more evidence comes to light). An important event, it was an opportunity to exchange stories, both funny and sad, on our medical and lifestyle challenges.
Lance: I understand that sadly, due to Thalidomide being available on the black market in Brazil, a ‘second generation’ of Thalidomide victims is emerging …
Yes, this is truly a tragedy akin to what happened to us back in the late ’50s early ’60s. Many Thalidomide groups around the world are working hard with second-generation victims to share the knowledge we have gained through our personal experiences, to ensure their lives are better.
Thalidomide was re-introduced as a treatment for multiple myeloma and has unfortunately made its way into Brazil through the black market. Many Thalidomide groups opposed the re-introduction of Thalidomide, for fear of a second-generation occurrence.
Lance: What responsibility do you think the Australian Government has to victims of Thalidomide … say, to yourself, and also by extension to your mother?
To be fair and to my understanding, past Australian Governments have never been approached for any form of compensation, but in saying that, they haven’t offered either.
The government of the day was assured by the manufacturer that it was safe. History tells a different story. The government has helped in other ways, and TAI is open to speaking to and working with the government to ensure our members are looked after into the future.
Our parents, particularly our mothers, have never been compensated or acknowledged properly as the real victims of the drug Thalidomide; this too, is something we as a group need to address.
Lesley: Why did you initially embark on a research campaign to locate Australian and New Zealand survivors of Thalidomide, and how did the process work?
Lance was keen to resume contact with the Sydney based Thalidomide survivors, with a view to having social get-togethers on a regular basis. He was experiencing a few aches and pains, which would normally be attributed to an older person, and we wondered if other survivors were having similar issues – and if so, could these then be attributed to the damaging effects of Thalidomide.
Some of the survivors had passed away, others no longer lived in Sydney, and with subsequent marriages there were name changes that we weren’t aware of. The little information we had was sketchy at best, and the information we needed was unavailable to us, due to legally binding confidentiality agreements. Using known contacts and meeting minutes from an earlier Thalidomide Foundation, plus the internet, I started researching. Being from New Zealand, I wasn’t aware of any survivors from there, but realised there was a distinct possibility there could be some. The internet and I became firm friends and after several months, my persistence was rewarded with the discovery of a dozen Australians and an article about a boy with short arms born in Blenheim, New Zealand.
Lesley: In late 2008, Diageo, the consumer goods company, was approached to secure a colossal $50 million in payments over 18 years for the remaining 45 survivors. How was this achieved, and how are the payments dispersed to the victims?
As a result of my search for the Sydney survivors, I was aware of ongoing payments being made by other governments and pharmaceutical companies into Trust Funds set up to assist Thalidomide survivors overseas. It seemed reasonable that a similar arrangement might be achievable for our Australian and New Zealand survivors. At the inaugural meeting of TAI in March 2008, Lance and I spoke with one of the parents, Ken Youdale, who offered to act as honorary advisor for TAI in seeking compensation.
In late 2008, Ken took himself off to London with the Australian Government’s and TAI’s blessing. He camped on Diageo’s doorstep and after three weeks, they realised he just wasn’t going to go away and relented and invited him in. He returned home with a promise of a negotiation in Sydney and a number – 49 survivors. Diageo’s instructions were clear: they wanted everyone found before negotiations concluded. The final figure hinged on this, and it was in the best interests of everybody to find as many survivors as possible. I continued searching, uncovering a few more, but without names, successful outcomes were getting further and further apart.
Initial negotiations with Diageo took place in August 2009 at the Blue Hotel, Woolloomooloo with Ken at the helm, assisted by Peter Gordon, recently of Slater & Gordon, who after a series of uncanny coincidences had joined our team. The Diageo representatives asked me how things were progressing with my quest, and having exhausted all options, I had to admit that I was 12 shy of the 49. They offered to look into the Distiller archives on their return to London, and true to their word, presented a list of names and last known addresses, identifying 39 Australian and 10 New Zealand survivors. I resumed my search. In total, it took the best part of two years to find 45 of the original 49 survivors (three had passed away, and one was never found).
Assessment of all survivors to determine levels of impairment was undertaken in Sydney over a three-week period in January 2010 and was hosted and co-ordinated by Lance, Ken and I. Negotiations were finalised via Sydney and London and a Trust was set up to disburse payments based on the outcomes of the January assessments.
Lesley: Why was it decided to approach Diageo and is there a concern that the company’s generous donation to the 45 victims might relieve or delay the Australian and New Zealand Governments of making compensations to the victims?
Diageo had inadvertently ‘inherited’ the Thalidomide tragedy with its purchase of a subsidiary company known as Distillers UK, which made Thalidomide under license for distribution in several countries including Australia and New Zealand. Diageo was already contributing to the UK thalidomide Trust and had a presence in Australia with offices in our major centres. It seemed an obvious choice. Diageo were under no legal obligation to come to the party, but were very aware of their moral obligation and they just blew us away with their compassion and generosity.
No approaches for compensation have been made to either government that I’m aware of. They may or may not be aware of the financial contribution made to Thalidomide Trust Funds by their overseas counterparts as a top up to the contribution made by the pharmaceutical companies.
The Australian Government supported our Diageo campaign; Ken went to London with letters in his pocket from Senator Jan McClucas, Bill Shorten, who was the Parliamentary Secretary for Disabilities and Nicola Roxon, the then Minister for Health, whose letter promised the support of Prime Minister Kevin Rudd. If it comes to pass, it is hoped that both the Australia and New Zealand Governments would acknowledge the financial commitment made by other governments to their survivors and follow their example in kind.
Lance: What words of encouragement do you have for other Thalidomide survivors?
The one thing that strikes me most with Thalidomide Survivors here and in New Zealand is that we just quietly get on with our lives. The main objective for Lesley and I in setting up TAI was to provide a support network that had been previously lacking. We need to continue to support each other, particularly as we age, to ensure that day-to-day living is made as easy as is possible – despite our circumstances. With every contact to and from our Thalidomide family, I always close with, “Stay happy”.
Thank you Lance and Lesley. Interview by Karen Farrell.
It was announced on 18 July 2012 that Diageo has agreed to assess further Thalidomide claimants in Australia and New Zealand.
People who were born around 1958 – 1963 and believe that they may have been affected by Thalidomide are urged to phone
(03) 9603 3000, or send their details to
This story was published in issue 66 of the Manning-Great Lakes Focus