…in reality we are still the victims. This categorisation from victim to survivor was in recognition of our parents, especially our mothers, who are the true victims of this disaster, leaving us as the survivors.
Introduction
1.1
Thalidomide is the common name of the active ingredient in a tablet that was marketed to pregnant women to ease symptoms of morning sickness in the early 1960s. Though these pregnant mothers had no way of knowing the effects, taking one of these tablets at a crucial stage in the development of the foetus had the capacity to cause the malformation of limbs, facial features and significant internal injuries.
1.2
Today, the children of those women are aged in their early-to-mid 50s and as noted above they identify as survivors.
1.3
Throughout this inquiry, the Senate Community Affairs References Committee (committee) has received compelling personal accounts from thalidomide survivors and their families. Survivors told the committee about the ways their lives have been profoundly impacted and, in many aspects, diminished by the severe injuries caused to their bodies by thalidomide. These injuries have affected survivors throughout their entire lives, and includes: complex and chronic health conditions; significant disabilities requiring specialised supports; mental illness; poor social and emotional wellbeing; chronic pain; reduced life opportunities; and significant personal financial costs.
1.4
Despite these effects, thalidomide survivors are still fighting to retain their independence, their dignity and to have their voices heard. Thalidomide survivors urged the committee to support their request for compensation, support and an apology for their families.
1.5
The families of thalidomide survivors, particularly survivors' parents, spouses and children, live with the effects of what thalidomide did to the person they love. Evidence before the committee conveys the trauma, guilt, and life changing carer responsibilities experienced by survivors' parents. The spouses and children of survivors have missed life opportunities and continue to make considerable personal commitments as they provide care and support to their loved one.
Brief history of thalidomide
1.6
Thalidomide was initially produced and released by Chemie Grünenthal in 1957 as a very safe sedative. Unlike other sedatives on the market, an overdose of thalidomide was thought to result in a deep sleep with no other side effects, whereas some other sedatives were lethal on overdose. The drug was marketed as safe and 'non-toxic', including statements that researchers 'could not find a dose high enough to kill a rat'. It was considered to be a 'wonder drug'.
1.7
On the basis that it was safe, the drug was marketed as being effective for treating insomnia, headaches, as well nausea and morning sickness during pregnancy.
1.8
Between the late 1950s and early 1960s, thalidomide was distributed in 46 countries and provided to thousands of pregnant women. In the years after its release, thalidomide was linked to nerve damage. Obstetricians also started to notice an increase in the number of severe birth defects, especially upper limb malformations.
1.9
In late 1961, two doctors Dr Widukind Lenz in Germany and Dr William McBride, an obstetrician from Sydney, independently reached the conclusion that thalidomide was responsible for the birth malformations. Dr Lenz raised his concerns directly with the manufacturer, Chemie Grünenthal. The medical community in Australia was alerted at a similar time to the link between birth malformations and thalidomide when Dr McBride wrote a letter in the medical journal The Lancet.
1.10
The drug was withdrawn from sale by the manufacturer and the international distributors shortly thereafter.
1.11
It is estimated that that approximately 40 per cent of children born with thalidomide-induced defects died in in their first year of life and over 10 000 children were born with severe congenital defects as a result of thalidomide.
Thalidomide in Australia
1.12
In Australia, products containing thalidomide were distributed and sold by the Australian arm of a British alcoholic beverage firm, Distillers Co. According to Department of External Affairs' cables from the time, products containing thalidomide were sold in Australia by Distillers Co. (Biochemicals) Aust. Pty Ltd between 1 August 1960 and 29 November 1961.
1.13
Products containing thalidomide were sold under a number of names for different clinical indications: Distaval (sedative and hypnotic), Valgraine (for treating miagraines), Asmaval (for asthma), Valgis (for headaches) and Tensival (for pre-menstrual tension).
1.14
In all states except Queensland, these drugs were at some time available without a prescription. In some cases, sales representatives visited doctors' clinics and provide free samples of the drug, which were in turn passed on to patients. Some of those patients were the mothers of today's survivors.
1.15
As a result of pregnant women taking only one or two tablets, thalidomide survivors were born with significant malformations of limbs, eyes, ears as well as less visible internal malformations including significant organ and nerve damage.
1.16
In the early 1970s, the parents of a small group of thalidomide survivors tried to obtain compensation from Distillers Company Limited (Distillers). Distillers eventually settled the case and recognised 40 Australian and New Zealand survivors. This group became the originally recognised group of Australian thalidomide survivors. Of this group, there are currently 36 Australian thalidomide survivors.
1.17
As part of the settlement, a modest amount of money was placed in trust for each thalidomide survivor according to the nature of their disability and in exchange survivors' parents were required to sign a waiver against further legal action against Distillers or Grünenthal and a confidentiality agreement. Further details about the settlement are noted in Chapter 4 of this report.
1.18
This modest settlement would represent the only compensation that thalidomide survivors would receive for the next 50 years.
1.19
In 1997, Distillers was purchased by British drinks manufacturer Diageo. As part of that purchase, Diageo inherited the legal liabilities of Distillers Co., including the thalidomide legacy.
1.20
In the 2000s, English thalidomide survivors had approached Diageo and secured a further provision to assist thalidomide survivors in the United Kingdom. In 2010, the father of one of the recognised Australian thalidomide survivors led an effort to obtain additional compensation from Diageo for Australia's thalidomide survivors. Diageo, after some negotiation, agreed to provide ex gratia payments to the recognised thalidomide survivors for at least 18 years. Those payments will expire in approximately 2028. Further details about the ex gratia payments can be found in Chapter 4 of this report.
1.21
At about a similar time, a group of newly identified previously uncompensated thalidomide survivors inquired about whether they were eligible for the ex gratia scheme. When Diageo declined to include them in the ex gratia scheme, a class action was commenced in Victoria. By the time the class action was completed, the class consisted of 107 members and was settled by Diageo for approximately $89 million.
Purpose of the inquiry
1.22
This inquiry considers what effect thalidomide malformations and injuries have had on the lives of survivors and their families, whether the supports that are currently available to survivors are sufficient to support them appropriately as they age and whether the compensation that they have received to date has been adequate.
Scope of the interim report
1.23
This interim report focuses on the experiences of thalidomide survivors and their families in dealing with the severe challenges that thalidomide has presented. This report considers how thalidomide has affected survivors' lives and the lives of their immediate families, what supports are available and what supports they might need and whether they have the appropriate resources to live an independent and dignified life as they age.
1.24
In its final report, the committee will focus on the companies and institutions that existed at the time that thalidomide was distributed in Australia and whose actions allowed at least 100 Australians to develop serious debilitating disabilities. The committee's final report will include a more detailed examination of the role of the Australian Government, both at the time thalidomide was available for sale in Australia and its role in supporting thalidomide survivors in subsequent years. The final report will make final recommendations about the way Australia's thalidomide survivors should be supported going forward.
1.25
Following this introductory chapter, this report consists of four chapters:
Chapter 2 considers the impacts thalidomide has had on survivors and their families;
Chapter 3 considers the support requirements of thalidomide survivors and whether existing supports are adequate to meet survivors' needs;
Chapter 4 considers what compensation has been provided to thalidomide survivors and whether this is sufficient in light of international schemes; and
Chapter 5 provides the committee's conclusions and recommendations.
Conduct of the inquiry
1.26
On 21 August 2018 the Senate referred the Support of Australia's thalidomide survivors to the committee for inquiry and report by 28 November 2018 with the following terms of reference:
(a)
adequacy of compensation and support;
(b)
responsibility for providing support;
(c)
provision of financial compensation;
(d)
the role of the Australian Government in compensation and support; and
1.27
On that day, the Senate granted the committee an extension of time to report to the last sitting Wednesday of February 2019. The committee sought this reporting extension to facilitate additional time to hold a second public hearing for the inquiry.
1.28
After receiving crucial evidence at the public hearing in Sydney on 31 January 2019, the committee requested a further extension to enable it time to complete its final report.
Submissions
1.29
In accordance with its usual practice, the committee advertised the submission on its website and issued 38 invitations to organisations the committee considered may have had relevant knowledge that may have assisted the committee. The committee requested that submissions be lodged by 21 September 2018. The committee continued to accept submissions after this date. The committee also issued two press releases to advertise the inquiry.
1.30
The committee received 68 submissions to the inquiry. Submissions were made primarily by thalidomide survivors and their families; submissions were also made by several organisations and other individuals with knowledge relevant to the inquiry.
1.31
The submissions received by the committee are published on the committee's inquiry webpage.
1.32
To protect the privacy of individuals who were often providing detailed personal information in the context of a public inquiry, the committee agreed to receive submissions from individuals submitting in personal capacity as name withheld.
Hearings
1.33
The committee held two public hearings for its inquiry. The first hearing was held in Melbourne on 2 November 2018, and the second hearing in Sydney on 31 January 2019. The committee heard from thalidomide survivors and other witnesses relevant to the inquiry at these hearings.
1.34
Transcripts of the hearings are available on the committee's inquiry webpage. A list of witnesses who provided evidence at each hearing is also available.
1.35
During this inquiry, the committee agreed to ask witnesses appearing providing lived experience evidence to use their first name only. The committee places a high value on this evidence and used the practice to ensure that the privacy of individuals who volunteer to provide detailed personal information to the committee is protected as much as possible.
Acknowledgement
1.36
The committee extends its thanks to all those who contributed to the inquiry.
1.37
In particular, the committee would like to recognise and thank the thalidomide survivors and their families who participated in the inquiry. The committee recognises that the evidence provided by survivors and their families was deeply personal and often painful to share. Personal account evidence is central to this report and the committee thanks survivors and their families for sharing their experiences.
Note on references
1.38
In this report, references to Committee Hansard are to proof transcripts. Page numbers may vary between proof and official transcripts.