For almost 60 years thalidomide has been the cataclysmic benchmark that health disasters all over the world are measured against. There has never been a health disaster like it.
1.1
Thalidomide was the active ingredient in a sleep-inducing and sedative drug that was distributed for sale in Australia between 1 August 1960 and 29 November 1961. Marketed as a safe drug, it was provided to pregnant women to ease the symptoms of morning sickness. As these unsuspecting pregnant women later discovered, taking even one tablet had the capacity to cause malformation of limbs, facial features and internal organs in their unborn children.
1.2
The Senate Community Affairs Reference Committee's (committee) interim report focused on the effect that thalidomide has had on the lives of survivors and their families and the support that has been provided to date. The committee noted that thalidomide has affected every part of their life, including their ability to work, to dress and toilet themselves and to provide physical affection to their loved ones.
1.3
In addition to their severely debilitating congenital injuries, thalidomide survivors are experiencing 'wear and tear' injuries that they have developed through contorting their bodies to adapt to a world that was not built to accommodate their disabilities, including their shortened limbs. Thalidomide survivors are now also experiencing nerve pain and the symptoms of early onset ageing. The combination of symptoms has meant that thalidomide survivors' bodies are rapidly deteriorating and most live with chronic pain.
1.4
The committee also noted that the lives of survivors' family members have been greatly affected. Parents, spouses and children have surrendered both career and life opportunities to provide care for their loved one. The committee found that as survivors' family members age they are less able to provide the increased level of support that many survivors need, meaning that survivors will soon need to rely on additional external assistance and support.
1.5
In its interim report, the committee concluded that the current supports that have been made available to thalidomide survivors are inadequate. Thalidomide survivors told the committee that the existing payments that they receive from Diageo are inadequate to purchase the necessary supports and the existing government supports from the health and disability sector, including the National Disability Insurance Scheme (NDIS), do not meet their needs. Unlike other governments around the world, the Australian Government is yet to provide substantial financial assistance to support thalidomide survivors.
1.6
The committee recognised in the interim report that Australia's thalidomide survivors require additional assistance, both financial and non-financial. Thalidomide Group Australia, who represents the group of thalidomide survivors who were identified in the early 1970s, urged the committee to support six requests for support:
a one-off upfront payment of up to $500 000 to each thalidomide survivor;
an annual payment of $2 190 260.00 to the Thalidomide Australia Fixed Trust to be distributed to beneficiaries on a tax and social security exempt basis;
a 'Gold Card' similar to a Department of Veterans' Affairs health card;
an 'Extraordinary Assistance Fund' of $500 000 to allow survivors to adapt their homes, environment and vehicles;
a formal apology to thalidomide survivors and their parents; and
a plaque in recognition of Australian thalidomide survivors and their parents to be mounted in a place of significance.
Scope of final report
1.7
This final report considers the role of the manufacturer, the distributor and Australian governments in providing support to Australia's thalidomide survivors. It also considers some of difficulties thalidomide survivors have experienced with the NDIS and how the requests made by the Thalidomide Group Australia, together with better coordination of services, could assist Australia's thalidomide survivors. The report contains the committee's final recommendations and conclusions regarding additional supports for thalidomide survivors.
Conduct of the inquiry
1.8
As noted in the interim report, on 21 August 2018 the Senate referred the support for Australia's thalidomide survivors to the committee for inquiry and report by 28 November 2018. On 28 November 2018, the Senate agreed to extend the reporting date to the last sitting Wednesday in February 2019 to allow the committee time to hold a second public hearing for the inquiry.
1.9
After receiving important evidence at its public hearing in Sydney on 31 January 2019, the committee sought a further extension of time to 22 March 2019 to allow the committee time to complete its final report.
Submissions
1.10
The committee advertised the inquiry on its website and issued 38 invitations to organisations the committee considered may have had relevant knowledge. The committee requested that submissions be lodged by 21 September 2018, but the committee continued to accept submissions after that date. The committee also issued three media releases to advertise the inquiry and provided copies of these media releases to stakeholders and submitters.
1.11
The committee received 71 submissions. A list of the submissions received by the committee can be found at Appendix 1 and copies of the submissions are available on the committee's webpage.
Hearings
1.12
The committee held two hearings for the inquiry: one in Melbourne on 2 November 2018 and one in Sydney on 31 January 2019. A list of the witnesses who appeared at the hearings can be found at Appendix 2 and copies of the transcripts are available on the committee's webpage.
Acknowledgement
1.13
The committee thanks all of those who contributed to the inquiry. In particular, the committee would like to thank thalidomide survivors and their families who shared their personal experience with the inquiry.
Note on references
1.14
In this report, references to Committee Hansard are to proof transcripts. Page numbers may vary between proof and official transcripts.