Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697630247890.pdf (Australia)
Submission to the Senate Inquiry into Support for Australia’s Thalidomide Survivors I am a Thalidomide survivor born with absence of  Right and Left Auricle  Left Ear Lobe  Left Auditory Canal , restricted right Auditory Canal (only source of hearing)  6th Cranial Nerve (Abducent)  8th Cranial Nerve (Acoustic)  Gall Bladder Peripheral Nerve Damage Deformed Anus Congenital Facial Palsy Duane Syndrome (Duane syndrome (DS) results from an absence of the abducens nerve (Cranial Nerve 6) Right Ear after second surgery 1972 Left Ear after second surgery 1972 Source: Royal Melbourne Hospital 1972 Aged 10 Support for Australia’s thalidomide survivorsSubmission 57 Source: Royal Melbourne Hospital 1972 Aged 10 My Submission will cover:  Growing up with Thalidomide Injuries My Story  Where I sit on the Thalidomide Spectrum The Lucky One  Medical issues as a result of exposure to Thalidomide (Distaval) Medical Issues  Family impact My family  The role of the Australian Government re: compensation and support Government Support.
o Responsibility for providing support Government responsibility o The Role of the Australian Government in compensation and support The Role of the Australian Government in compensation and support  Written documents of o Health Issues Appendix A & B o Government support in other countries Appendix C. Support for Australia’s thalidomide survivorsSubmission 57 My Story Immediately after I was born I was separated from my mother for many hours whilst the doctors examined my injuries caused by Thalidomide, something many of them had never witnessed before - denying the spontaneous bond between mother and newborn baby to be formed.
As a baby and toddler my mother kept a bonnet on my head at all times to hide my ear and facial deformities from the world and minimise the comments and open stares from passing strangers.

My father always removed it stating “He is a normal little boy just missing ears.” When I started school I had to suffer thick rimmed ‘coke bottle’ glasses prescribed by the eye specialist in an attempt to straighten my eyes.
Having no ears, the glasses were held on with elastic making me an easy target for the other children who constantly flicked the elastic and verbally taunted me.

I was an easy target for adults as well.

I remember the head mistress of the day singling me you sit over there.

YOU are repeating out in front of a packed assembly saying “ kindergarten.

If I had MY way you’d be at the SPASTIC school.” Needless to say most of the other kids and some of the adults present enjoyed her performance.
I may have looked different to everyone else but there was nothing wrong with my mental capability.

Thankfully in today’s society this sort of showmanship is neither acceptable nor tolerated.

When I was 8 my parents drove me 12 hours to Melbourne to see a Doctor who specialised in artificial ears.

When we met his first comment was “I am so sorry.


You have driven all this way for nothing; the artificial ears won’t hold the weight of those glasses.” He introduced my parents to a plastic surgeon who convinced them that guinea pig surgery was the way forward.

Within 24 hours of our arrival in Melbourne I was on the operating table for 7 hours as they began constructing two ears using my own body for parts.
Two more operations followed at ages 10 and 12 leaving me with some serious scar tissue and ears made from rib cartilage that looked like they were melted onto my head.

Recoveries were long and excruciating and always in the men’s ward, one time next to a guy who had shot half his face off in an unsuccessful suicide attempt.

More surgeries were scheduled but I rebelled; so much trauma at such a young age and outcomes worse than what I had to begin with.
In year four I decided I wanted to be a police officer after they visited our school but I didn’t get past first base due to my hearing and sight issues.

My teenage years were horrendous, constant teasing and of course no girlfriends, which was very tough on my self-esteem.

My family moved away from the city and I married young, to a country girl, a wonderful soul who married me for who I was on the inside and not what I looked like on the outside.
We had three beautiful children together; but I was angry; very angry and bitter.

I feared that my life would be cut short, over before it started, and I couldn’t cope with any of it, so I walked.

My Thalidomide issues were all consuming, leaving me disabled in ways I didn’t see coming.

I later met my beautiful wife of today, who gave me confidence, who helped me love myself even though I hated what I look like.
Support for Australia’s thalidomide survivorsSubmission 57 The Lucky One I had always considered myself “the lucky one” when it came to Thalidomide because I had arms and legs.

It wasn’t till I was in my 40’s when I was told by a fellow victim, “How the f%*k can you be the lucky one, you are a victim of Thalidomide” I was forced to reassess.
I was now even angrier at Grunenthal, distillers & the Australian Government (who allowed the sale of the drug untested) Studies carried out in recent times have caused re-assessment on the actual level of damage to Thalidomide Survivors born with the issues I incurred.
So in reality I was not “The Lucky One” Medical Issues I took redundancy at 51 because the Thalidomide peripheral nerve damage was starting to take its toll; I suffer headaches, trigeminal facial nerve pain and my entire body aches day in day out.

I have weekly massages and chiropractic appointments just so I can get out of bed each day.

My diet is monitored constantly as my liver is working overtime to compensate for my missing gall bladder.
Studies carried out in the UK on Thalidomide survivors have noted that Thalidomide survivors, due to Peripheral Nerve Damage, have bodies that of a person 25 years older than they actually are.

My eyes are deteriorating rapidly which leads to new glasses on an annual basis.

My hearing also continues to deteriorate and I have to see an Ear, Nose & Throat specialist every few months to have my right ear cleaned out by instruments to allow me to hear.
I have recently tried a new hearing device which did help my hearing however the large cost of this implement prevents me from purchasing one at this time.

My family As a child my parents spent a lot of money due to my health issues.

Many trips to specialists at Camperdown Children’s hospital, trips (3) to Royal Melbourne Hospital Melbourne for plastic surgery trying to create ears for me.
My brother was always left behind in Sydney (an emotional time for him) another impact for my parents and my brother & sister was the constant taunts I endured through my school life.

This required my parents to spend extra time with me and robbing my siblings of quality time.

As a father now my children have to time their visits to me around my being well enough to see them.

They get very emotional/helpless when they see me suffering.
Every morning I watch my wife leave for work, not because she wants to, but because she has to so we can survive.

I’m left at home, hurt and frustrated because I have become a kept man due to the effects of Thalidomide.

The love of my wife, five children and three grandchildren are my reason for living.

If not for them I wouldn’t bother.


I push myself every day, as do all my beautiful Thalidomide friends, to make the best of what is left, after so much was stolen from us by the “Wonder Drug” that was Distaval (Thalidomide).

Support for Australia’s thalidomide survivorsSubmission 57 Government responsibility Citations from the Federal Parliament Hansard suggest that a four month delay occurred between when the Health Department became aware of the link and the banning of the drug.
The following quotes are quite instructive.
“The reason why I raise this matter, Mr. Deputy President, is that I have a disquieting feeling that our Department of Health is not sufficiently aware of what is happening.”, Senator Turnbull (Tas),30 August, 1962; “Why was not the ban on Distaval imposed then, instead of four months afterwards, when a question was asked in this House?”, Senator Turnbull (Tas), 22 August 1962; “I think that not only every honourable member but everybody in the country was shocked by the tragedy of babies born deformed as a result of the use by their mothers during pregnancy of the drug thalidomide.
Australia's Minister for Health does not seem to have been shocked sufficiently to do much about it”, Mr. Webb (Stirling), 17 October, 1962.

The Australian Government of the day allowed Distaval (Thalidomide) to be distributed by The Distillers Company (Bio Chemicals) without testing of the drug before distribution.

As noted above even after the drug was withdrawn worldwide it continued to be available in Australia.
Therapeutic Goods Administration (TGA) As a direct result of the drug Thalidomide the TGA was set up by the Australian Government.

This has already been acknowledge by the current health Minister the Honourable Greg Hunt who has offered to provide a plaque recognising Thalidomide’s role in the setting up of the TGA.
* Extracts from: A History of Therapeutic Goods Regulation in Australia Nothing could illustrate more strikingly the necessity to have standards for drugs than the varying reports in connexion with antibiotics.” Almost a decade before the events with thalidomide, it was seemingly not well understood that medicines complying with standards could none the less be responsible for adverse reactions.
REGULATION BECOMES MORE THAN QUALITY CONTROL (1962 – 1966) It was in December 1961 that the landscape for the regulation of therapeutic substances was to change dramatically.

On December 1961, The Lancet published a brief but succinct letter from Dr William McBride, Hurstville, NSW.1 Its first paragraph stated “Congenital abnormalities are present in approximately 1.5% of babies.
In recent months I have observed that the incidence of multiple severe abnormalities in babies delivered of women who were given the drug thalidomide (‘Distival’) during pregnancy, as an anti-emetic or as a sedative, to be almost 20%.” An editorial footnote drew attention to the publication in The Lancet, two weeks earlier, of the decision of Distillers Company (Biochemicals) Ltd to withdraw from the market all its preparations containing thalidomide pending investigation of reports from two overseas sources associating thalidomide with harmful effects on the fetus in early pregnancy.
It might have been expected, given the strong Australian association with the identification of the terrible harm caused by thalidomide, that this would have been a prominent topic for the Department of Health and in the Australian medical journals.
Surprisingly, thalidomide is not Support for Australia’s thalidomide survivorsSubmission 57 mentioned in the Director-General of Health’s introduction to the Annual Report for 1 July 1961 to 30 June 1962 and is mentioned quite uncommonly in the Medical Journal of Australia (MJA) in the two years following the publication of McBride’s letter.
On August 8, 1962, the Minister for Health (Senator Wade) responded to a question in Parliament about Distival (thalidomide): “I want to say that whilst the manufacturers have withdrawn the drug from world markets, we in this country are not prepared to see it rear its ugly head in any form again, and I shall be very happy to confer with my colleague, the Minister for Customs and Excise, to make quite sure that it is kept out of this country.” Questions in this area continued to be asked in Parliament over the following months.
The issue was discussed with the Minister for Health by the Federal Council of the Australian Medical Association at its session in March 1963.4 “Federal Council gave broad approval to his plans.

These will need to be worked out with great care.

The Minister has not pleased certain sections of the community by taking as long as he has to reach the present stage of planning, but this is a decidedly difficult problem, the solution of which is by no means obvious.
It will take time to work out further details, and we hope nothing will be done precipitately.” The Role of the Australian Government in compensation and support Given the information I have just provided and knowing that the drug was allowed into Australia untested (which has subsequently led to the stringent testing of all future medication to this day), the Government has a moral obligation to provide compensation and ongoing financial support to Thalidomide Survivors, especially as many other governments around the world (including Commonwealth Country Governments) are providing substantial financial support to their Thalidomide Survivors on top of any financial payments from the manufacturers of this drug.
Thalidomide has denied me the opportunity to work until retirement age of 67.

As a Thalidomide survivor I worked and paid taxes from age 16 to 51.

It was at 51 that the sudden onset of severe pain from the peripheral nerve damage restricted my ability to hold down a permanent job.

When I stopped working at 51 due to my health I was earning $76,000.00 per annum and getting 12% superannuation which was indexed to increase to 14% within the next 2 years.
My wages alone, which I have been denied (without taking into account any pay increases I may have received since) amount to $1.21 million.

Add to this 14% superannuation, CPI, wage increases etc.

I firmly believe the government has a moral obligation to contribute some form of income to me to allow me to live the life I should have been able to, and would have, if not for the issues I have had to face as a direct result of Thalidomide.
The financial support would also allow me to increase the amount of medical support required to keep me functioning, as well as massages, Chiropractic, Yoga, hearing devices, spectacles, bidet etc.

Support for Australia’s thalidomide survivorsSubmission 57 Appendix A Final Report into the Current Health Status of Australian and New Zealand Thalidomiders.
By Dr. Mark C. Chorlton School of Psychology, The University of Newcastle, Australia In June 2013 it was decided that the physical and psychological status of the Australian and New Zealand Thalidomide members of TAI should be assessed.

In order to achieve this the SF-36, a standardized health assessment checklist, was emailed to all members of TAI and Thalidomiders encouraged to complete the checklist and return to Dr. Mark Chorlton for scoring and compiling.
The advantage of using the SF-36 beyond it standardization is the fact that it has been widely used in health research throughout the world.

In addition there are numerous normative databases against which sample data can be compared.

The SF-36 is a multi-purpose, short-form health survey with only 36 questions.

It yields an 8- scale profile of functional health and well-being scores as well as psychometrically-based physical and mental health summary measures and a preference-based health utility index.
It is a generic measure, as opposed to one that targets a specific age, disease, or treatment group.

Accordingly, the SF-36 has proven useful in surveys of general and specific populations, comparing the relative burden of diseases, and in differentiating the health benefits produced by a wide range of different treatments (Ware, 2001).

Currently 15 Thalidomiders have returned completed forms.

Eight of those have been from female Thalidomiders.
Not all respondents included their age so it is impossible to calculate an average age for the group, however the ages for those recorded ranged from 50 to 52 years of age.

The data were then entered into an excel worksheet, scored according to the approved method and the data averaged to produce the data for the eight subscales that appear in Table 1.

Table 1.

Means, standard deviations (SD) and standard errors (SE) for the 8 subscales of the SF-36 for the TAI Thalidomider group.
PhysFnc RolePhys Pain GenHlth Vitality SocFnc RoleEmot EmotWbng 40.56 12.50 35.97 33.06 42.22 44.44 44.44 67.78 Mean 28.33 26.08 21.15 18.88 22.90 25.45 41.22 6.68 6.15 4.98 4.45 5.40 6.00 9.72 15.25 3.59 SD SE The eight subscales of the SF-36 are Physical Functioning, Role Physical, Bodily Pain, General Health, Vitality, Social Functioning, Role Emotional and Emotional Wellbeing.

Higher scores on the subscales indicate better outcomes.
For example a score of 85 on Bodily Pain would indicate minimal bodily pain whilst a score of 30 would indicate a high level of bodily pain.

It is evident from the data presented in Table 1 that all subscales bar Emotional Wellbeing are Support for Australia’s thalidomide survivorsSubmission 57 below 50 for the Thalidomiders indicating that they as are group have significant physical and psychological impairments as measured by the SF-36.
For example, the score of 12.50 (sd 26.08) on the subscale of Role Physical indicates that Thalidomiders find that their physical disabilities impact on the physical functioning to a major degree.

It is also clear that pain is a major problem for the Thalidomiders with a score of 35.97 (sd 21.15) indicating a high level of physical pain in the sample as a whole.

The physical health summary score for the group is 30.52 indicating a very significant level of physical impairment for the group.
When considering the mental health subscales of the SF-36 it is evident that the impairments experienced by the Thalidomiders are less than the physical impairments.

The lowest score is 42.22 (sd 22.90) on the subscale Vitality whilst the highest is 67.78 (sd 15.25) on the subscale Emotional Wellbeing.

The overall summary mental health score for the group is 49.72.
The findings, particularly the latter two, indicate that the Thalidomiders are less impaired by their psychological and social states than they are by their physical state.

A major advantage of using the SF-36 is the fact that numerous studies have utilised the form to assess the health of various clinical groups as well as the general population.

This allows us to compare the results for the Thalidomiders against other clinical groups and against the Australian general population.
When we look at the data for the general Australian population and compare it to the Thalidomide group we find that the Thalidomiders have lower scores on all eight subscales compared to their age-matched peers (see Figure 1).
PhysFnc RolePhys Pain GenHlth Vitality SocFnc RoleEmot EmotWbng Figure 1.
Plot of average subscale scores with standard errors for the TAI Thalidomide group (blue plot) compared to Australian normative data for 55-64 year olds (red plot), 75+ year olds (green plot) and UK Thalidomiders (purple plot).

It is quite clear that Thalidomiders not only have lower scores and therefore have greater levels of impairment than their age matched peers (55-64 year old normative data) but that their scores are even lower than the 75+ year olds.
This suggests that the impairments Support for Australia’s thalidomide survivorsSubmission 57 experienced by the Thalidomiders are greater than those experienced by 75 year old Australians in the general population.

This difference in capacity is most clearly evident for the Role Physical subscale.

Statistical analyses were conducted on the data to determine if there were significant differences between the TAI Thalidomider respondents and the Australian normative data.
One sample t-tests were conducted for all analyses.

When compared with the 55-64 year old normative data there were highly significant differences on all subscales other than Emotional Wellbeing, which was only marginally significant.

Comparison with the 65-74 year old normative data showed significant differences between all subscales with a marginally significant difference for Emotional Wellbeing.

For the 75+ year old normative data analyses showed a non-significant difference for Physical Function.
There were significant differences for all other subscales.

What the statistical analyses show is that there are significant differences between the Australian and New Zealand Thalidomiders and the age matched Australian population.

Further, these differences are maintained when compared with the 65-74 year old population.

It is only when compared against the 75+ year old population that similarities in functioning become apparent.
It is also useful to compare the Australian Thalidomiders with the UK Thalidomiders.

The physical and psychological health of the UK Thalidomiders was assessed in 2012 using the SF-12 which makes it possible for a direct comparison between the two groups to be made.

Like the Australian Thalidomiders, the UK Thalidomiders have scores in all subscales well below the age matched norms and the 75+ year group.
It is worth noting that the UK group has lower scores on all subscales other than Role Physical and General Health subscales.

Statistical analysis shows that there were non-significant differences on the Pain, General Health, Vitality and Role Emotional subscales, whilst Social Functioning was marginally significant.

There were clearly significant differences on the Physical Functioning, Role Physical and Emotional Wellbeing subscales.
It is worth noting that the UK Thalidomiders were significantly worse off on the Physical Functioning and Emotional Wellbeing than the Australian and New Zealand Thalidomiders.

The UK Thalidomiders had a significantly higher score on the Role Physical subscale.

In summary, the data obtained from the 17 Australian and New Zealand Thalidomiders show clearly that they are experiencing significant, and severe physical impairments as a result of their physical disabilities.
In comparison to their age-matched Australian compatriots they are significantly worse off on all dimensions as measured by the SF-36.

The data also shows that the Thalidomiders are more impaired, particularly in the physical dimension, than 65-74 year old, and indeed 75+ year old, Australians.

What this means is that the care needs of the Thalidomiders is commensurate with older Australians who have more than likely retired from full-time work.
It is also worth noting that the condition of the Australian and New Zealand Thalidomiders, as measured by the SF-36, is similar to that of the UK Thalidomiders.

It is clear that with regard to Pain, General Health, Vitality and Role Emotional subscales there are no differences in impairment between the two groups.

What is interesting to note is the Support for Australia’s thalidomide survivorsSubmission 57 significantly worse Emotional Wellbeing scores of the UK group.
On this subscale the Australian and New Zealand Thalidomiders are similar to the other Australian norm groups, however the UK Thalidomiders exhibit a significantly lower score indicating a major problem with respect to their psychological state.

Appendix B.

Current Health Needs of Thalidomiders The following document is based in part on the reports of the UK Thalidomide Trust for UK Thalidomiders and the Heidelberg University report into the health needs of European Thalidomiders.
In addition the personal experiences and knowledge of other Australian Thalidomiders by the author forms the remaining basis of this document.

The Heidelberg report assessed 900 Thalidomiders from the German-speaking world whilst the UK report was confined to Thalidomiders from the UK who are eligible to receive funds from the UK Government Health Grant.
This report will present the findings from each of these studies separately and then attempt to extrapolate their findings to the Australian cohort of Thalidomiders.

UK Thalidomide Health Grant Final Report 2012 There are 472 Thalidomiders alive in the UK today.

The variety of impairments includes missing, short and/or deformed limbs, damage to eyes and ears, facial disfigurement, and internal organ damage.

A small number suffer from brain damage.


In March 2010 the UK Department of Health made a grant of £20 million to UK Thalidomiders.

The grant is intended to help Thalidomide-impaired people to address the exceptional health and health related needs they are experiencing as they grow older.

A set of health related needs was developed which were intended to guide Thalidomiders in their expenditure.
These are - Independent Mobility; Home Adaptations; Communications Technology; Medical Treatment Costs; Respite; Personal Assistance; and Social Activities.

One of the most common comments from Thalidomiders who were assessed is that they feel that the rate at which their bodies are ageing is more rapid than that of the general population.
Thalidomide-impaired people generally feel that the rate at which their bodies are aging or the health problems they are experiencing are disproportionate to their chronological age.
This view was supported by the results of the Health Related Quality of Life survey (SF12) which suggest that Thalidomide-impaired people do experience significantly poorer physical health, especially in relation to physical functioning and pain, compared to the general population and also compared to people with Multiple Sclerosis.

However, overall their mental health is only marginally worse than the general population.

Table 1.
Table 1.

SF12 results for the Thalidomide group versus the general population and 1 year progressive disease Multiple Sclerosis groups.

Lower scores indicate a poorer result.

Support for Australia’s thalidomide survivorsSubmission 57 Population General Pop.

Multiple Sclerosis Thalidomide Physical Health Mean 50.00 41.80 24.60 S.D.

10.00 10.20 13.50 Mental Health Mean 50.00 48.10 43.80 S.D.
10.00 7.80 11.70 It is important to keep in mind that the physical problems experienced may be a direct result of damage caused by Thalidomide or it may be a result of the way in which people use their bodies to compensate for their physical deformities.

Chronic pain has become a major problem for many Thalidomiders as well as muscle weakness, peripheral nerve pain in limbs; numbness and some have partial paralysis.
Weight gain has also been noted as a problem and this produces additional problems related to personal care and independence.

Table 2.

Summary of identified health concerns for the UK Thalidomide Group.
Health Problems Chronic Pain Sensory Impairment Dental Problems Mental Health Fatigue Weight Gain Medical Complications Major Symptoms Joints, neck, shoulders or back pain Hearing, sight, numbness in limbs or "pins and needles" in periphery Damage to teeth due to need to use mouth pieces to aid communication Depression and anxiety plus irritability and anger Easily tired and require significant rest periods Limited capacity to exercise has resulted in weight gain Treatment for non-Thalidomide health problems exacerbated by Thalidomide damage Perhaps the final point to note is one that sets the Health Grant in the much wider context of the Thalidomide story.
There is a strong sense within the Thalidomide community that the Health Grant is not only about recognising the exceptional health problems Thalidomide-impaired people are experiencing as they age, it is also about achieving social justice for the damage they suffered, and enabling them to live a ‘normal life’ in spite of this.

Its continuation is for many Thalidomide-impaired people a concrete acknowledgement of this.

Heidelberg University Report Into Health Needs of European Thalidomiders.
The Heidelberg report provides findings from 900 Thalidomiders residing in the German- speaking world.

It includes data from questionnaires as well as face to face interviews and group discussions.

One of the most important findings of this report is the finding that approximately 70% of respondents have experienced significant secondary damage to their bodies as a result of using their bodies in ways they were not designed for in an effort to compensate for missing limbs.
The Heidelberg report examined if there were significant increases in the number of people reporting secondary damage in various body regions over a five year period.

The data indicated that significant increases in the number of people reporting secondary damage Support for Australia’s thalidomide survivorsSubmission 57 had occurred over the five year period of the study.

Indeed, most of the bodily regions assessed showed significant deterioration over the five year period.
The deterioration in bodily function has significant implications for the continued independence of many Thalidomiders.

Activities of daily living that once could be undertaken now become increasingly difficult and in some cases now require assistance to complete.

Chronic pain has become a major issue for the Thalidomiders assessed by the Heidelberg group.

84.7% of those assessed reported suffering from chronic pain.

It is worthwhile noting that pain appears to impact on females more so than for males.
One of the major implications of this finding are that physical therapies, such as physiotherapy and massage, which have been shown to alleviate pain are seldom funded to the extent that they can be used on a regular basis in an effort to manage the pain without resorting to medication.

It is also worth noting that chronic pain has become a major reason why many Thalidomiders have had to cease full-time employment.
Psychologically the Heidelberg report indicated that episodes of depression were more common than that exhibited in an aged matched normal population (11.3% vs. 8.1% respectively).

In addition anxiety about the future was identified as a major issue.

62.5% of Thalidomiders supported the statement “I feel anxiety when I think about my future”.

Thalidomiders anxieties appeared to be centred on loss of mobility, loss of independence, medical complications, and deterioration of physical abilities.
Australian Thalidomiders Health: Anecdotal Evidence The author has had the privilege to know a number of Thalidomiders over many years.

In recent times this has been aided by the meetings held by Thalidomide Australia Inc. (TAI).

From these meetings the author has been able to discuss the present health concerns of a significant proportion of the Australian Thalidomide cohort.
As identified by the UK and Heidelberg reports, Australian Thalidomiders have noticed deterioration in their physical condition, particularly over the last 5 to 10 years.

One of the major problems identified is an increase in pain.

Pain has been experienced in a wide variety of areas and these can include the upper and lower back, the feet, calves, thighs, buttocks, groin, hips, shoulders and neck.
In addition to muscular pain many Thalidomiders experience nerve pain due to constriction of nerve pathways in the neck and spine.

The former often produces headaches which can be quite debilitating in their extent, whilst the latter result in referred pain, often to the lower legs and feet, or hands and lower arms.

Sensory deficits are also a problem for Australian Thalidomiders.

Several experience partial or complete hearing loss and several also experience visual problems.
In addition several have begun to develop facial neuralgia.

As indicated by the UK and European Thalidomiders, the Australian cohort also believes that their bodies are wearing out more rapidly than aged matched “normals”.

This is due mainly to the overuse of joints and muscles in order to compensate for shortened or missing limbs.

Many are developing arthritis in the knee, shoulder and hip joints and the expectation is for this disorder to further deteriorate the joints functioning over time.
Support for Australia’s thalidomide survivorsSubmission 57 A number of Thalidomiders admit to being “tired” of coping with their disabilities.

This psychological state can last for a significant period of time and may develop into clinical depression in some cases.

Anxiety about their future health and financial security is also a major concern to the Australian Thalidomiders.

Personal Health: The author suffers from a number of significant health problems.
The major defect caused by Thalidomide is phocomelia of the upper limbs.

The most prominent health problem is a severe chronic pain condition secondary to severe spinal scoliosis which has required four major surgeries (1974, 1976, 2005 and 2007).

It has been postulated that this spinal condition was the result of Thalidomide.

In addition arthritis has been diagnosed in the authors’ right knee and there is significant deterioration of the cervical spine, specifically the C4 to C6 vertebrae.
The chronic pain condition is treated by the use of pain killers (Oxycontin) combined with stretching exercises, hydrotherapy, massage, chiropractic sessions and rest when needed.

The author also has been diagnosed with clinical depression and has been under pharmacological treatment (Prozac) by a GP for many years post treatment by a Psychiatrist.

As a trained Psychologist the author also engages in a number of cognitive behaviours as a means of managing his psychological and pain states.
Like other Thalidomiders the author is anxious about his future physical health and is also concerned about his future financial position.

Government and NGO Services Accessed: At present the author accesses a number of services provided by the Federal and State governments.

These include a partial Disability Support Pension, a carers allowance for my wife, and domestic assistance provided by Maitland Community Care Services.
In addition the author pays a private contractor for garden and home maintenance and mowing.

Indeed, it has reached the stage where most physical tasks required for home maintenance are beyond the capabilities of the author and paid assistance is required.

Report written by: Dr. Mark C. Chorlton B.A.

(Hons) Ph.D. References: UK Thalidomide Health Grant Final Report 2012 Heidelberg University Report Into The Health Needs of European Thalidomiders.
Support for Australia’s thalidomide survivorsSubmission 57 Appendix C. What have other governments done?

The governments of other countries have offered financial assistance to their Thalidomiders on several occasions over the last few decades.

In the UK the national government has provided the following financial support: In 1973 the Thalidomide Trust was set up to administer payments made by Distillers, who had distributed the Thalidomide drug in the UK, and the UK government.
Distillers (now Diageo), in 1973, agreed to pay £20 million sterling in compensation.

In 1974 the British government donated £5 million sterling to the Thalidomide Trust, which was an offset of tax on the original £20 million paid in by Distillers.

In 1996 the British government, without offering any particular reason, donated a further £7 million.
In 2005, Distillers agreed a complex new multi-year financial settlement estimated to cost in the order of £153 million as additional compensation for Thalidomide survivors.

The additional funding provided for covenant payments to be increased and for the payments to be extended from 2022 to 2037.

This was calculated on the basis of the money required to double beneficiary annual payments from 2004 levels by 2022.
UK Thalidomide survivors currently receive on average £20,000 sterling per year from the Thalidomide Trust.

On 14th January 2010, the British Health Minister, Mike O’Brien, confirmed a new £20 million support package, which had been announced during the month of December ’09.

The £20 million will be administered through the Thalidomide Trust.

If the £20 million was to be divided equally across all surviving Thalidomide survivors in the UK, each survivor would receive in the order of £43,000 sterling.
Norman Lamb, Care Services minister, said his focus was on offering “practical help”.

An evaluation of the £20m pilot scheme set up in 2009 had shown that thalidomide victims needed bespoke adaptations to their homes and cars which were more expensive because of the rarity of their injuries.

The compensation from the Government comes on top of payments from Diageo, successor to Distillers, the company that distributed thalidomide in the UK and elsewhere in Europe.
In Ireland the national government has provided the following assistance: In 1970 the German government set up a compensation scheme from which Irish Thalidomiders received financial support.

In detail Thalidomiders received the following.

1) A lump sum ranging between DM7,500 (IR£1,250 approximately) and DM25,000 (IR£4,200 approx), and (2) A monthly allowance for life ranging between DM100 (IR£17 approx) and DM450 (IR£75 approx).
Support for Australia’s thalidomide survivorsSubmission 57 In 1973 the Irish government as a matter of principal decided to significantly increase the German compensation scheme.

In addition to the German scheme the Irish government provided the following.

1) A lump sum ranging between IR£6,600 and IR£21,300, and 2) A monthly allowance for life ranging between IR£31.75 and IR£95.00.
The allowances, German and Irish, are tax-free, are not reckonable for State benefits and each of the Thalidomide survivors are the holders of medical cards.

In addition, a Thalidomide survivor can also claim disability allowance of approximately €849 per month or €10,192 per annum (2010 figures).

If disability allowance is added (€849 per month – 2010 figures) the total tax-free sum claimable by a Thalidomide survivor is €1,773 (least severe) or €3,381 (most severe) monthly i.e.
€21,280 or €40,568 annually (2010 figures).

The German federal government has provided the following: Chemie Grünenthal now known as Grünenthal, the German manufacturer of the drug, set up a €50m (£41m) fund for 3,000 thalidomide victims on the Continent, mostly in Germany, and unveiled a memorial last September when, for the first time, it expressed its “sincere regrets” and “deep sympathy” for those affected.

But it has never compensated the British victims.


On average, German survivors of Thalidomide receive the equivalent of £10,000 sterling a year from a foundation funded by Grünenthal and the government.

The Swedish, Danish and Norwegian governments provide the following: The governments of Sweden, Denmark and Norway operate a compensation scheme for Thalidomide survivors.
Sweden (107 survivors), Denmark (20 survivors) and Norway (17 survivors) The compensation is paid twice a year by the original Thalidomide drug distributor, AstraZeneca (formerly known as Astra).

The compensation payable by AstraZeneca is tax exempt.

The average yearly payment amounts to €6,000 whilst the highest is €20,000.

In 2010 AstraZeneca, increased the average annual payment to €9,000 whilst the highest annual payment increases to €30,000.
The Canadian Government provided the following: In 1991 Canada paid a once-off compensation sum of $9.7 million divided between approximately 125 Thalidomide survivors living in Canada.

Payments were based on 4 levels of disability.

Level 1 was two arms missing above the elbow and two legs above the knees missing.

Level 2 was two arms missing above the elbow OR two legs missing above the knees.

Level 3 was two arms missing below the elbow OR two legs missing below the knees.
Level 4 was one arm missing below the elbow or one leg missing below the knee.

Support for Australia’s thalidomide survivorsSubmission 57 The average payment was $80,000 Canadian dollars per survivor.

Money was also given for a staffed office for Canadian Thalidomide issues.

(TVAC) Recently the Canadian Parliament said “Yes” in an all-party vote to assist Canadian Thalidomiders.
The package Canadian Thalidomiders requested the following financial assistance from their federal government: $250,000 CDN tax free lump sum each.

$75,000-125,000 tax free each per year depending on level of disability.

$500,000 lump sum every year into a trust like the Thalidomide Trust for accessibility aids.

Support for Australia’s thalidomide survivorsSubmission 57