30 OCTOBER 2010
In a conference room at the Rydges Hotel in south-west Sydney, Peter Gordon takes to the stage to speak to a small group of Australian thalidomide survivors. These are ‘official’ thalidomiders. All around fifty years old, they are members of a select group of about forty who as children and teenagers received both official recognition and a small sum of compensation.
One of Australia’s best-known lawyers, Gordon is about to deliver a radical message. He is convinced that there are many more unrecognised thalidomiders: people who suffered terrible injuries but have either never come forward or have been wrongly and unfairly told that thalidomide was not the cause.
In the audience is Mary Henley-Collopy. It’s her birthday. Forty-nine years ago she was born without arms, her fingers emerging from her shoulders, and with tiny legs. One of the most profoundly physically damaged of the official Australian survivors, Henley-Collopy is largely confined to a wheelchair and sometimes uses carers to help her dress, shower and much else. She is, by any standard, profoundly disabled. She also has a razor-sharp brain, a quick wit, a prodigious memory and a ferocious independent streak. Yesterday she travelled to the conference from her home in Temora in country New South Wales, negotiating bus, train and taxi on her own to get to the conference venue.
Henley-Collopy listens closely to Gordon. Her reaction will help rewrite thalidomide history.
Peter was saying that many people never came forward for compensation during the 1970s, and others came forward but were rejected for trivial reasons. Like they were a month too old or a month too young or the injuries did not look quite right. Like there was a thumb present when the medical experts thought it should be missing.
Gordon finishes by telling his audience that he wants to force the drug companies to pay compensation to the thalidomiders who missed out in the 1970s. Henley-Collopy knows that succeeding in decades-old legal claims will be difficult, to say the least. But she notes Gordon’s passion, and as he speaks her thoughts turn to a woman she went to school with forty years ago.
Henley-Collopy was born in Perth in 1961 and immediately given up by her birth parents. Soon afterwards she was sent across the country for medical treatment, and raised by a devoutly religious woman at the Christian Service Centre in Melbourne’s eastern suburbs. Later Henley-Collopy was sent to the Yooralla primary school for children with physical or intellectual disabilities.
One of her schoolmates was Lyn Rowe. ‘Because Lyn sort of looked like me, she and I were sometimes lumped together,’ Henley-Collopy remembered.
Lyn had no arms or legs and sometimes tottered about at the school on prosthetic legs. Once I was scooting down a hallway by hanging on to a pram-type thing. I could barely see where I was going and crashed straight into Lyn, who was on her prosthetic legs. She ended up with her head tangled up in the pram. She screamed and wailed and carried on. We can laugh about it now but she was pretty angry with me at the time.
Henley-Collopy never wondered whether Lyn was also a thalidomider. ‘When I was a kid I didn’t think about that sort of thing.’ Once or twice over later years, she heard Wendy Rowe say that a virus during pregnancy had caused Lyn’s condition.
But as Henley-Collopy listened to Gordon at the thalidomide conference she began to wonder. ‘It was a light-bulb moment. I mean, Lyn was about my age, she had no arms and no legs. I had to wonder: was she a thalidomider? The more I thought about it, the more I realised I had to speak with Peter.’
When Gordon finished, Henley-Collopy joined a queue of people wanting to speak with him.
We had a talk and I told him about Lyn, though I didn’t use her name. I said she had no limbs, a great family and that I’d been to school with her. I also told Peter the virus story, which I’d never really thought about until the last few minutes. But now I was thinking about it, and I had a lot of doubts.
Gordon was intrigued. He asked Henley-Collopy to talk with the family.
‘It was Melbourne Cup day 2010,’ Wendy Rowe later recalled. ‘Mary called and said there was a class action going ahead for Australian thalidomide survivors. She told me that she thought Ian and I should contact the lawyers.’ Wendy told Henley-Collopy that she had no proof she had taken thalidomide. ‘By proof, I meant that I had no prescription, or pills or some sort of medical record. It happened fifty years ago! Mary told me that I should just contact the lawyers for Lyn’s sake and see what they said.’
Wendy thought about the phone call for a couple of days and talked about it with Ian and Lyn. None of them had ever been involved in a legal case. The hassle of it all, the disruption, the expense: none of it sounded appealing. The discussions swirled. Wendy was seventy-four years old and Ian was seventy-eight. Both were finding the physical challenge of caring for Lyn increasingly difficult. Wendy had started lifting weights in an effort to maintain enough muscle to physically manoeuvre her immobile daughter. Lyn loved living with her parents, and the thought of going into government care terrified her. But all of them knew that the status quo could not last much longer. Soon Wendy and Ian Rowe were going to be physically incapable of looking after their daughter.
In the end that unavoidable fact prompted Wendy Rowe to call the lawyers.
For years we’d been worrying about what would happen to Lyn when we were too old to look after her. If there was a slim chance to provide for her future by calling the lawyers, we just had to do it. If we didn’t win it would make no difference to our lives. We had very little and we’d still have very little.
Wendy telephoned Gordon Legal and spoke with Peter Gordon’s son, Patrick, who was doing his legal apprenticeship with his father, and was at that time one of only two employees. Shortly afterwards, Peter and Patrick Gordon were sitting in the Rowe family’s Nunawading living room, drinking tea and listening.
‘Lyn was very quiet and didn’t speak much,’ Peter Gordon remembered.
Ian was cooperative and affable. Wendy did most of the talking for the family. Clearly they had been through a lot. I was listening carefully but I was also doing a legal calculation in my head. Lyn had been exposed at the height of thalidomide availability, there was good evidence Wendy had taken the drug. It was changing everything—this was a bloody good case.
The meeting lasted about an hour. By the time Peter and Patrick Gordon left to drive back to the city, Peter Gordon’s mind was made up. ‘We knew that this was it. We had to get a result for that family.’
Ian and Wendy Rowe grew up not far apart in the seaside Melbourne suburb of Brighton, which is today home to some of Melbourne’s most expensive real estate and exclusive private schools. In the 1930s, though, Brighton was a far quieter place, with real affluence concentrated in the streets near the beach. Wendy and Ian’s family homes were close to Nepean Highway, at the less fashionable end of the suburb.
Ian Rowe was born in 1932, and Wendy Tudor in 1935. Ian’s father Bill was a blacksmith and his mother Hilda stayed home to raise the three children. Wendy Tudor was one of six siblings. Her parents placed great emphasis on education, and her father, an electrical engineer, ‘just expected that we would all get degrees’. Her four brothers did just that: law, science, architecture and accountancy. ‘Liz and I let the side down by getting teaching diplomas. But later on Liz got a master’s degree in art history. So in the end, I was the only one who didn’t get a degree like Dad wanted.’
Ian and Wendy met at the Male Street Methodist Church. ‘It was a fun time,’ Ian recalled. ‘Dances and socials and so on.’
After finishing school in 1949 Ian started a clerkship at AMP, the life insurance company, where he stayed for almost fifty years. Wendy trained as a kindergarten teacher and then started work in North Melbourne.
The couple married in January 1957, spent their honeymoon touring Tasmania, and moved into their new home in Nunawading the day they returned to Melbourne. While Nunawading in Melbourne’s east is middle suburbia these days, back then the roads were unpaved and lined with market gardens. Settling into married life the Rowes began attending the Nunawading Methodist church, where Dr Hugh Indian was a member of the congregation. His surgery was a short walk from their home and, inevitably, Dr Indian became their family doctor. ‘He was a good man, a good doctor,’ Wendy recalled. When Dr Indian was away or busy the Rowes saw one of the other doctors at the practice, Ron Dickinson or Ron Henry.
Wendy fell pregnant in 1958 and Merrilyn arrived the following April. Two years later Alison was born. ‘Life was busy and happy and very normal,’ Ian said. When Alison was only about four months old, Wendy began to suspect she was pregnant again. ‘I was worried and not very happy. Alison was tiny and Ian and I didn’t want to add to the family again so soon,’ Wendy remembered. She had been breastfeeding Alison and thought she would not get pregnant.
‘Breastfeeding as contraception is a myth but back then I believed it, like a lot of people.’ She laughed. ‘We didn’t know much in those days, nothing like today.’
Ian’s mother was surprised by the news of Wendy’s pregnancy. ‘Hilda was very unimpressed. She thought it was ridiculous I was pregnant again so quickly.’ Wendy smiled. ‘So did I! But I wasn’t going to admit that to my mother-in-law.’
At that time most babies in Australia were delivered by GPs, the move to obstetricians having barely begun. Hugh Indian was Wendy’s doctor throughout all four of her pregnancies, and delivered all of her babies except Lyn. Naturally when morning sickness set in, Wendy went to see him. ‘I was feeling anxious about being pregnant again and the morning sickness was shocking, much worse than it had been with Merrilyn and Alison. And I had two little children demanding my attention.’
It was late June or early July 1961. Dr Indian told Wendy he had a new medication that would calm her and help with morning sickness. The name Distaval meant nothing to Wendy. ‘He said they were very good and the samples were free so I was appreciative. For about five weeks, I took a tablet every morning.’
The Distaval pills contained thalidomide, one of the most powerful and destructive drugs ever let loose unchecked in the market. Scientists would later learn that a single tablet was sufficient to kill or severely malform an unborn child.
When her mother started taking the pills, Lyn was a four- or five-week-old embryo a few millimetres long, about the size of a small grain of rice. At that point the embryo inside Wendy was a tiny collection of rapidly dividing cells, a frenzy of developmental activity.
Curved in shape, and with its visible tail, such embryos look something like a translucent tadpole. The heart is starting to beat rapidly and facial features, including ears and mouth, are starting to form. Many of the organs and structures are beginning to emerge. The tongue, liver, gall bladder, pancreas and lungs, for example, start to develop at around this time. So too do the arms and legs, with hand and foot plates starting a little later.
But like a grenade thrown into a bunker, the thalidomide pills Wendy took catastrophically damaged the normal growth of the embryo inside her. While many of the developmental processes proceeded unmolested, the thalidomide, ingested and circulating in the embryonic bloodstream, completely halted the development of Lyn’s arms and legs.
The tragic irony, given the drug’s terrible dangers, is that the salesmen who promoted thalidomide to doctors around Australia had been instructed to pitch Distaval as an outstandingly safe sleeping pill and, at a lesser dose, as an anti-anxiety medication (a sedative). It was this emphasis on complete and unprecedented safety that allowed thalidomide to prosper in a crowded marketplace.
The full-page ads for Distaval placed by Distillers in the Medical Journal of Australia, at the time a key information source for doctors, illustrate the marketing line. A small child is standing on a stool, raiding the family medicine cabinet. The child has opened an unidentified bottle and the reader correctly surmises that an enormous, potentially fatal overdose is about to occur.
Thankfully, though, the advertisement can offer a happier ending. If the unnamed medication is Distaval there will be no tragedy. This child’s life may depend on the safety of ‘Distaval’, the advertisement shouts. Consider the possible outcome in a case such as this—had the bottle contained a conventional barbiturate, doctors were urged.
Year by year, the barbiturates claim a mounting toll of childhood victims. Yet today it is simple enough to prescribe a sedative and hypnotic which is both highly effective… and outstandingly safe. ‘Distaval’ (thalidomide) has been prescribed for over three years in Great Britain, where the accidental poisonings rate is notoriously high; but there is no case on record in which even gross overdosage with ‘Distaval’ has had harmful results. Put your mind at rest. Depend on the safety of ‘Distaval’.
The advertisement was used in multiple countries around the world, and the safety hyperbole was repeated like a mantra by the sales reps. Years later a Distillers man remembered the simple mnemonic he kept in mind when he met with a doctor or pharmacist. ‘SESH—safe, effective sedative and hypnotic. All I did was talk about how dangerous the barbiturates were, how safe Distaval was and away I went. It was that easy. There was a great desire for a safe sleeping pill and our drug filled that gap.’
This pitch was constantly reinforced and sales reps were instructed to follow the script. ‘Distaval is a non-toxic, highly effective sedative/hypnotic that can be widely used with complete safety, and with no risk of overdose,’ a Distillers manager recalled. ‘That was it. Simple.’
This safety claim was the brainchild of the drug’s German inventor, the pharmaceutical company Grünenthal, which took it to remarkable heights of invention and dangerous fiction. Distillers unwisely adopted the hyperbolic safety babble after contracting with Grünenthal to market thalidomide in the UK, Australia and a host of other countries.
The safety pitch was, of course, spectacularly misconceived. Thalidomide turned out to be one of the most unsafe general use drugs of all time. Yet for decades Grünenthal and Distillers have claimed that they were just unlucky: that they had no way of knowing their drug was dangerous, and that the whole disaster was a terrible but unavoidable tragedy. They have claimed consistently—for five decades—that they did all the necessary testing, asked all the right questions. Any other drug company in the same circumstances, the story goes, would have suffered the same misfortune.
The ‘we did nothing wrong’ claim has shaped public opinion. As a result Grünenthal—still a family-owned company—has avoided the sort of odium that might otherwise have stuck to it.
But as Lyn Rowe’s legal claim gathered momentum in 2011, material emerged that made a mockery of any notion that Grünenthal and its licensee Distillers had fallen blamelessly into the thalidomide disaster. Documents surfaced demonstrating that, by the time Wendy Rowe started taking the much-hyped drug in mid-1961, the description of thalidomide as outstandingly safe was a barefaced lie. Both Grünenthal and Distillers knew it—although their salesmen in Australia, and often elsewhere, were left in the dark.
Months before Wendy Rowe was given the drug, Grünenthal knew thalidomide was dangerously flawed. It was doing its best to suppress reports that thalidomide had caused serious nerve damage. Privately, Grünenthal was brawling with its own insurer over expected lawsuits by consumers, and the company’s internal lawyers were issuing dire warnings about Grünenthal’s behaviour in relation to thalidomide.
Worse, long before Wendy Rowe took the drug in Australia, Grünenthal staff in Germany had received reports of birth malformations possibly connected to thalidomide. Yet Grünenthal did not investigate these reports; nor did it halt or slow the thalidomide sales juggernaut.
Skeletons would also emerge from Distillers’ closet. Most disturbingly, by the time Wendy Rowe took the thalidomide delivered to her doctor’s surgery by a Distillers sales rep, multiple senior Distillers staff in Australia knew that a Sydney obstetrician had reported that the drug might be killing and maiming babies. And again, nothing was done.
So in mid-1961, ignorant of everything the drug companies and their employees knew, Dr Hugh Indian gave Wendy Rowe the pills, and Wendy Rowe, confident in her doctor, gratefully took them.