That one little pill destroyed my body inside and out. Thalidomide is like tossing a stone into the water: it causes a ripple effect. The drug didn't just destroy me; it rippled onto my parents, my siblings, my family, my ambitions, my relationships, my jobs, my earnings, my health—my everything.
2.1
Thalidomide survivors and their families have been, and continue to be, profoundly impacted by the often catastrophic injuries caused by thalidomide. The evidence provided to the committee makes clear that for many thalidomide survivors, every aspect of their lives is either made more difficult, or is diminished, by the acute damage thalidomide has caused to their bodies.
2.2
Thalidomide survivors were born with a range of malformations due to the teratogenic effects of thalidomide. Often, these malformations were severe and extensive. The congenital malformations afflicting survivors can be visible, such as malformed limbs, or invisible, such as damage to internal organs and nerve systems. Congenital malformations have caused thalidomide survivors to suffer from a lifetime of functional impairment. As a further result of thalidomide-induced injuries and impairments, thalidomide survivors suffer from chronic health conditions, psychosocial impacts, increasing 'wear and tear' on their bodies, age-related conditions beyond their years, and newly recognised or late onset symptoms.
2.3
Despite immense challenges, survivors fight daily to overcome their thalidomide injuries, to contribute to society, and to live their lives in a regular and dignified way. This, in part, is achieved by thalidomide survivors adapting their bodies to perform ordinary tasks in unusual ways, such using their feet and mouths in lieu of functional upper limbs. Evidence provided to the committee suggests that as thalidomide survivors age, such necessary adaptions are becoming increasingly unsustainable. Survivors report they are currently experiencing wear and tear on their bodies, in addition to already complex and deteriorating health conditions. As thalidomide survivors' health continues to be effected, there are associated impacts on their functionality and independence.
2.4
Thalidomide survivors and their families have been systemically disadvantaged in living their day-to-day lives. Thalidomide injuries have meant that survivors are disadvantaged in accessing education and employment, face the significant financial burdens associated with thalidomide injuries and poor health, and have been socially ostracised in many instances.
2.5
This chapter considers the impact of thalidomide injuries on Australia's thalidomide survivors and their families. The committee particularly considered the complex and developing health impacts reported by thalidomide survivors, and the consequential disadvantages they have faced. The thalidomide injuries content of this chapter preludes the content of Chapter 3, which considers what supports are required by survivors to effectively manage the impacts of their thalidomide injuries.
Health impacts
2.6
Thalidomide was marketed as a safe drug to use. Despite this, thalidomide can cause significant damage to vertebrate embryos during sensitive periods of development. The congenital malformations caused by thalidomide are collectively referred to as thalidomide embryopathy. The committee was told that thalidomide has an array of different actions, and given this, 'thalidomide causes an incredible amount of damage in embryos, which varies in severity between individuals.'
2.7
The impact of thalidomide on an embryo is time dependent, rather than dose dependent, and as such even a single dose of thalidomide at a particular time can have significant impact. This is known as the time sensitive window, which is understood to extend 20–36 days after fertilisation. Thalidomide may also have the ability to damage embryos in the late stage of development and there may be 'no time in pregnancy that is safe from the effects of thalidomide.' Unbeknownst to the mother consuming thalidomide, the time at which thalidomide was taken influenced the type of congenital malformations their child would be born with. For example, phocomelia of arms occurs between 24–33 gestational days.
2.8
The congenital malformations associated with thalidomide embryopathy are wide ranging, and have had shocking consequences for thalidomide survivors. The wide ranging malformations of thalidomide embryopathy mean that '…no two thalidomide survivors are the same.' This variation in thalidomide survivors congenital malformations has resulted in varying complex health conditions for survivors.
2.9
Thalidomide survivors' health conditions that are attributable to thalidomide embryopathy, but which go beyond survivors' congenital malformations, are often referred to as consequential impacts. Thalidomide survivors are experiencing a range of consequential impacts, including evolving health outcomes such as early-onset of age related conditions, wear and tear on their bodies, and late onset symptoms.
2.10
Ms Elizabeth Newbronner, an academic with a background in researching the impacts of thalidomide on survivors, suggested there are three 'root causes' of thalidomide survivors' thalidomide-related physical health conditions:
(1)
Thalidomide damage—including the deterioration of the damage known to be caused by thalidomide, the emergence of new damage, and improved understanding of known thalidomide damage;
(2)
Accidents and injuries—occurring as a result of existing thalidomide impairments; and
(3)
Premature 'wear and tear'—arising from survivors' adaption of their bodies to compensate for their original thalidomide damage.
2.11
As thalidomide survivors age, the consequential health impacts of thalidomide are worsening with adverse impacts for thalidomide survivors' levels of impairment and, for survivors with more severe damage, further limitations on their already restricted independence. Living with physical impairments and chronic health conditions that restrict thalidomide survivors' independence has had psychosocial impacts both on survivors and their families. Submissions to the inquiry have described psychosocial impacts as including: depression; suicidal ideations; anxiety; and social isolation. The adverse psychosocial impacts experienced by Australia's thalidomide survivors are consistent with submissions describing the psychosocial and mental health impacts of thalidomide on survivors in the United Kingdom and Germany.
2.12
This section of the report considers the evidence received from thalidomide survivors and their families on the impacts thalidomide has on survivors' health. In particular, the committee considered evidence which indicates that, in addition to the already significant health impacts faced by thalidomide survivors, their health outcomes are becoming increasingly complex, and are worsening, as survivors age.
Congenital malformations
2.13
The congenital malformations caused by thalidomide were often lethal. Submissions received from Thalidomide Group Australia and the Department of Health estimate that 40 per cent of the babies affected by thalidomide died during their first year of life. Another estimate provided to the committee went further and suggested that of the approximately 10 000 babies born globally with thalidomide embryopathy, just half survived. Ken, a thalidomide survivor, told the committee that his twin brother was still born as a result of thalidomide.
2.14
Australia's thalidomide survivors live with an array of thalidomide-induced congenital malformations associated with thalidomide embryopathy. These malformations were summarised during the inquiry as follows: eye and face muscle defects; absence of auricles and deafness; absent of hypoplasia of arms; absent fingers and thumbs with three joints; defects of the femur and tibia; malformations of the heart, bowel, uterus, digestive track and gallbladder; and defects of the spine.
2.15
The most common congenital malformation afflicting thalidomide survivors is malformed limbs, a condition known as phocomelia. Research on thalidomide-induced limb malformations has previously suggested that limb defects are the most common malformations found in thalidomide-affected people because 'internal organ defects induced through effects on vascularisation, as the organ was forming, were likely lethal in utero.' The UK Thalidomiders Campaigns Team described the limb malformations associated with thalidomide embryopathy in its submission:
The main impairments caused by Thalidomide affect the limbs and are usually bilateral, both arms, both legs, or all four limbs. The most severe impairment is known as phocomelia, a condition where the long bones of some or all limbs are misshapen and where the hands and feet, which can be either, malformed or rudimentary, arise from the trunk. Impairments cover a wide spectrum of limb disabilities ranging from a substantial shortening of the limbs or entire limblessness, to fused fingers. One of the trademark features of Thalidomide is missing thumbs.
2.16
Personal account evidence submitted to the inquiry outlines the diverse range of congenital malformations affecting thalidomide survivors. The congenital malformations reported to the committee include:
malformed or absent limbs, including phocomelia;
malformed hands, including absent fingers or thumbs;
internal organ malformations;
malformed ears or absent ear components and associated hearing loss;
paralysis of facial muscles and facial malformations;
spinal malformations, including scoliosis;
damaged or absent nerves, including cranial and peripheral nerve damage, and facial palsy and Moebius syndrome;
other additional and absent body components; and
eye disorders resulting in vision impairments, including Duane syndrome.
2.17
At the time thalidomide survivors were born in Australia, medical knowledge may have been insufficient to identify their congenital malformations as being caused by thalidomide. The mother of a thalidomide survivor told the committee:
The obstetrician too was shocked and had no explanation for how my baby should be so different. There were no similar birth defects known to any of the doctors, pediatricians or [ear, nose and throat] specialists. For the first few years there was no definite explanation but gradually the belief that Thalidomide was the culprit began to emerge. I recalled having taken Thalidomide Distaval as a sedative on one occasion early in my pregnancy and found the rest of the sample pack on my return home from hospital.
2.18
For that mother, it was not until her son was seen by a paediatric ear, nose and throat specialist in the United Kingdom that thalidomide embryopathy was recognised. Identification of the symptoms of thalidomide embryopathy can be a challenge in the present day, particularly if it is unclear as to whether an effected person's mother took thalidomide, noting that there are other congenital conditions that present thalidomide-like malformations. In providing evidence at the committee's public hearing in Sydney, Mr Peter Gordon, Senior Partner at Gordon Legal, said:
…there is a horrendous but also very wide range of injuries that thalidomide causes. There may be people in this room or sitting around this table who may have thalidomide disabilities. We simply don't know what they are, because the breadth of the spectrum of thalidomide injuries has never been properly mapped. We still don't understand with certainty what the biological mechanisms are—we know that there are more than one—that cause those injuries.
2.19
In providing evidence to the committee, Professor Janet McCredie and Professor Neil Vargesson agreed that it is possible there are people with less visible forms of thalidomide damage for which existing processes have not identified as being affected by thalidomide.
2.20
The committee notes that some of Australia's thalidomide survivors' health conditions were last formally assessed in 2010, as part of the process by which the Australian distributer of thalidomide agreed to provide financial support to identified thalidomide survivors. There has not been a formal reassessment of those survivors' health conditions, nor does there appear to be plans to do so. The committee received evidence from at least one survivor indicating their health has deteriorated since that previous health assessment in 2010. Other evidence before the committee suggests that the deterioration of thalidomide survivors' health may not have been fully accounted for in that previous health assessment.
Thalidomide-induced health conditions
2.21
Thalidomide survivors experience a range of consequential health conditions beyond their initial congenital malformations. Thalidomide survivors experience higher than average prevalence of musculoskeletal problems, pain, dental problems, deteriorating sight and hearing, and mental health conditions. The committee received some evidence indicating that thalidomide survivors have died prematurely as a result of complications of thalidomide injuries.
2.22
For some survivors, the consequential health impacts of thalidomide began very early in life. The committee heard evidence that one thalidomide survivor, at approximately seven weeks of age, was diagnosed with a thalidomide-induced condition that affected the ability of their body to adequately hydrate and provide nutrition. This condition, coupled with other gut malformations, impacted on the development of their brain and ability to learn.
2.23
On top of thalidomide survivors' extensive health issues, some survivors are now experiencing late onset, or newly emergent, health conditions related to thalidomide. The UK Thalidomiders Campaign Team submitted that most thalidomide survivors report experiencing at least four of five severe late-onset health issues.
Musculoskeletal problems
2.24
Some thalidomide survivors advised the committee that they had developed musculoskeletal problems because of their thalidomide injuries. Mark, a thalidomide survivor, explained that his most debilitating disability was his back pain:
My arms are my deformity; my chronic back pain is my disability.
2.25
A survivor suggested to the committee that the scoliosis he has may be the result of thalidomide. This survivor has to have four major back surgeries to manage his severe spinal scoliosis which has left him with a chronic pain condition that severely impedes his quality of life. For that survivor, any bending activity, including doing domestic activities such as packing a dishwasher, exacerbate his scoliosis.
2.26
A number of other thalidomide survivors told the committee that they also suffered some form of scoliosis. One survivor's experience of spinal curvature lead to significant consequential impacts, including multiple surgeries:
By ten years of age [the survivor's] spine began to curve and quite quickly he had a curvature of 56* which made his left chest press on his heart. Then started the years of repeated surgical operations which tried to straighten the spine. He lived in vests to hold him in place, Each operation fused more and more of his vertebrae until he finally had all the vertebrae fused (bone harvested from hips etc) and it was finished off with a steel plate in the sacrum area.
2.27
Ken, a thalidomide survivor, described experiencing pain in his back commensurate with a slipped disc which was not attributable to thalidomide embryopathy, however this pain is aggravated by the way he has to move his body to compensate for the effects of thalidomide-induced congenital arm malformations. Ken also explained the impact the fusion of his radial long bones in his elbows has on his functionality:
…I cannot rotate my wrists, making everyday tasks difficult to perform. For example, collecting change at a shop involves me dropping my shoulder and twisting my spine to pick up my hands to receive the coins. I also find it difficult to open jars and bottles and to pick up things like paper. It has also meant that my arms are bent and I am unable to extend them.
2.28
Restricted or no wrist rotation is also experienced by other thalidomide survivors.
Vision and hearing problems
2.29
Thalidomide survivors with congenital malformations to their eyes and ears have faced vision and hearing problems throughout their lives. As thalidomide survivors age, survivors are experiencing the consequential impacts of deteriorating vision and hearing. Vicki, a thalidomide survivor, expressed her fear regarding the uncertainty of potentially losing her hearing and sight as a result of thalidomide injuries:
The thing that frightens me is that I've got the chance of going deaf and blind. I didn't realise the thalidomide is rapidly compounding the effect on my sight and my hearing. I don't know what I'm going to do about that. I've had operations. I'm waiting on an operation on my left ear to see if they can open up the canal any more, but no-one will touch me. I did find one guy who said he'd have a go, so that's all right. Anyway, like most of us, we're just after some answers on what's going to happen.
2.30
The committee heard how vision impairments impact thalidomide survivors' lives and interfere with their ability to work; their ability to lip read (for a survivor who is also deaf); and engage in recreational activity. Some thalidomide survivors are experiencing deterioration in their eyesight condition. One survivor told the committee that the deterioration of their sight is accelerating:
…my eyesight is failing more dramatically. With glasses and surgery I have been fortunate but my eyesight is getting worse and again the longer term prognosis is the same – little or none in the end. I understand that these senses deteriorate in older people anyway but as a Thalidomider everything is sped up as we age so losing these important senses I believe will occur much sooner than normal.
2.31
Ms Elizabeth Newbronner noted in her submission that results from a 2015 health and wellbeing survey of United Kingdom thalidomide survivors shows that 'nearly half the survey respondents said they had deteriorating sight/eye problems' and 'a third had deteriorating hearing/other ear problems'.
2.32
Whilst glasses or contact lenses can assist in vision correction, thalidomide survivors with no ears or functional arms will have trouble using these supports:
Problems with sight and hearing are common as people get older, and Thalidomiders are no different, with two-fifths of UK Thalidomiders reporting worsening sight. However the problem with Thalidomiders is how to correct their sight when they have no ears to hold their glasses on and no arms or hands to put in contact lenses.
2.33
As someone with no ears or arms may not be able to wear glasses or contact lenses the importance of thalidomide survivors access to eye surgery has been highlighted to the committee. However the cost of surgery to correct eye conditions can be prohibitive for thalidomide survivors:
When I eat my eye involuntarily weeps and it doesn’t blink. The operations to fix my eye would be very expensive so I endure alternating dryness, constant irritation and weeping, it’s there all the time.
Issues arising from organ damage
2.34
Internal organ malformations are one of the invisible damages caused by thalidomide. Thalidomide survivors' congenital malformations to internal organs normally affect their kidneys, lungs, intestinal tract and heart. Professor Vargesson suggested to the committee that some of the internal organ damage that thalidomide survivors are experiencing later in life could be the result of maturation of their organs which were not fully functional due to in utero thalidomide damage.
2.35
Thalidomide survivors' submissions to the inquiry note they are experiencing health issues associated with their internal organs. For example, one thalidomide survivor submitted he was 'diagnosed as having a large oesophageal diverticulum and giant bulla of the lower lobe of the right lung.' That survivor required surgery to rectify the diverticulum. Another thalidomide survivors told the committee that he was born without a gall bladder, and his diet is constantly monitored as his liver is 'working overtime' to compensate for his absent gall bladder.
2.36
A number of thalidomide survivors submitted that they are experiencing heart problems. For example, one survivor who has Tetralogy of Fallot, reported having many open-heart surgeries and expects to have more surgery in the future. That thalidomide survivor finds it difficult to walk long distances, in part, due to their heart condition. Other thalidomide survivors also submitted that they are experiencing heart problems.
Nerve damage
2.37
One of thalidomide's less visible, but still harmful, impacts is damage to survivors' nerves. Michael Magazanik, Partner, Rightside Legal informed the committee that nerve damage was the initial indication of the damage thalidomide was to have
…the first shocking side-effect of thalidomide to become public was the slew of nerve damage that became apparent. Long before birth malformations were connected with the drug, it was apparent that [thalidomide] was doing really profound neurotoxic damage.
2.38
Mr Lance Fletcher, President and Founder of Thalidomide Australia Incorporated has significant thalidomide induced damage to his cranial nerves six, seven and eight, and later experienced infections in cranial nerves ten and eleven. Mr Fletcher explained the effect of cranial nerve damage for him was facial pain, trigeminal neuralgia, and impacts on his trapezius muscle. These impacts limited his ability to use a computer for long period, causes severe headaches, and reduction in his ability to function day to day. Ultimately, Mr Fletcher's nerve damage restricted his ability to work, leading to him leave a job that he loved, and was well paid, at the age of 49.
2.39
Thalidomide induced damage to nerves is a common experience amongst thalidomide survivors. Contributors to the inquiry described that nerve damage affects thalidomide survivors in varying ways, including: reducing their balance and smell; causing weakness and tiredness; creating skin sensations, such as pins and needles; and causing significant pain.
2.40
Nerve damage also caused by thalidomide appears to be worsening as thalidomide survivors age. The spouse of a thalidomide survivor told the committee that their thalidomide-affected partner experienced areas of numbness from their thalidomide damage which are 'spreading and growing larger.' There does not appear to be any research of thalidomide's nerve damage for Australia's thalidomide survivors, however research relating to overseas thalidomide survivors has been done.
Surgery
2.41
Some thalidomide survivors have sought to treat their congenital malformations and consequential health conditions through surgery. The seriousness of thalidomide injuries has meant that some survivors have required multiple major surgeries throughout their life. Surgery has been essential for many thalidomide survivors seeking to maintain their independence.
2.42
For some thalidomide survivors, surgical requirements of thalidomide survivors commenced early in their childhood. For example, one thalidomide survivor submitted that their first major surgery occurred at 14 months of age to straighten an arm which has been malformed.
2.43
Female thalidomide survivors have faced additional challenges of requiring breast reduction and mastectomy surgeries to reduce the strain on their bodies and to assist in maintaining their mobility and independence. For survivors who have had mastectomy surgery, these procedures have been deemed 'elective', requiring those survivors to self-fund the procedure. The Medicare Benefits Schedule includes three items for mastectomy and double mastectomy procedures, however non-therapeutic cosmetic surgery services do not attract Medicare benefits.' One survivor outlined the healthcare and functional need for double mastectomy surgery:
After much professional dialogue and thought, my plastic surgeon (six (6) years ago) agreed to my plea for a double mastectomy - purely for functionality purposes. The action of, and energy required, to put a bra on had become almost impossible for me. My toes, neck, back and shoulders had increased arthritis, which reduced my abilities to grip and manoeuvre my body and, my teeth were becoming too fragile to continue the act of getting into a bra. Additionally, my reach to my dinner plate was seriously impeded as, my one (1) usable hand, was not long enough to reach past my breasts to my food. I received no financial support from Medicare or my private health fund, despite written evidence provided by my general practitioner and surgeon! Mutilating my body in such a drastic way did not constitute as elective ‘cosmetic surgery’ for me!
2.44
Thalidomide survivors have required a range of different surgeries to treat their diverse thalidomide induced malformations and health conditions. Some of the surgeries required by survivors include:
amputation of body components;
reconstruction ears and treatment of malformations;
operations to treat severe spinal scoliosis;
operations to treat malformed arms;
rotational osteotomy to treat malformations of the hip;
eye lens replacement surgery; and
dental surgery to fix their damaged teeth.
2.45
For some survivors, options for corrective surgeries have been limited by the problems associated with their other health conditions, including abnormal physiology and osteoporosis. Joanne, who previously worked as a graphic designer, explained to the committee how her thalidomide injuries restricted her options for surgery which led to her having to stop work:
I saw a hand surgeon who told me I could have surgery, but, as my anatomy is different from normal people, it was risky and he couldn't guarantee it would be successful. In fact, he said it could get worse. Seeing as I only have one so-called good arm, I wasn't prepared to take that risk. Also, I was strongly recommended against having the surgery by other doctors that had dealt with thalidomiders who had done the surgery and it wasn't a success. This forced me to stop work as the pain was unbearable, which put a massive financial strain on me and my husband.
2.46
The mother of a survivor submitted that her daughter's heart operations were ongoing to the extent their family decided to relocate to Brisbane to be near the Prince Charles Hospital. Frequent and lengthy hospital visits to treat thalidomide injuries is a common experience amongst thalidomide survivors.
2.47
Many thalidomide survivors anticipate requiring further surgery in the future, and this is considered further in Chapter 3.
Ageing—early onset of age-related conditions and wear and tear
2.48
Thalidomide survivors told the committee that their bodies are 'failing' them and are wearing out. Whilst survivors are only aged between 53 – 58, the committee received evidence survivors experience symptoms of 'wear and tear' on their bodies that are normally associated with people in their 80s.
2.49
As noted earlier in this chapter, thalidomide survivors have sought to maintain their functionally and independence by using their bodies in unusual ways. Ms Newbronner explained how thalidomide survivors' health is changing with age:
…as thalidomide survivors reach late middle age, they're experiencing declining physical health, in particular secondary damage caused by the way they've had to use their bodies to compensate for their impairments. I think it's really important to understand that thalidomide embryopathy, whilst not progressive in the traditional sense, is not static.
2.50
The Thalidomide Group Australia told the committee that thalidomide survivors' '…disabilities and general health is being severely impeded upon as they age.' This view was echoed by a number of other submissions to the inquiry that described the effects of thalidomide as accelerating, worsening, and magnifying, as survivors' age. The committee was told that the 'early onset of aged related conditions in thalidomide survivors is 'clearly a major issue and requires urgent attention.'
2.51
Ageing can have a significant effect on thalidomide survivors' nervous system, as described by Professor McCredie:
…when the ageing process arrives for middle-aged thalidomiders, it hits a population that's already been severely depleted by the thalidomide experience in embryo. There are not enough nerve cells there to function properly, and so they get symptoms: nerves send the wrong messages, like pain, tingling and numbness; there's confusion of hot and cold sensations, and many other phenomena; or nerves may fail to function at all, and the part goes numb. So thalidomiders were robbed by thalidomide before birth: they were robbed of a population of nerve cells, and they were born with reduced numbers, without the normal buffer against any possible future damage. Thus, in middle age, thalidomide's minor nerve damage, combined with the age changes that are inevitable, combine to cause a profoundly debilitating sensory neuropathy, resulting in premature onset of old age.
2.52
As thalidomide survivors are challenged by early onset of ageing, survivors are also ageing differently from the general population and there is not an older generation of thalidomide survivors from which lessons can be learnt from. Some of the premature ageing effects described in submissions made to the inquiry include:
arthritic-related conditions;
dental conditions, from using mouths instead of injured of absent hands and limbs; and
increasing fatigue and weakness.
2.53
The severity of some survivors' early onset ageing indicates they will require access to aged care earlier than the general population. The Thalidomide Group Australia informed the committee that some survivors are already discussing accessing full-time care in the next few years of their life. If this is the case, those survivors would be entering the age care in their late 50s and early 60s.
2.54
The likelihood of requiring early access to aged care, and the associated limitation of their independence, was described by one thalidomide survivor as follows:
For 57 years, I have asked my body to perform every day tasks with my teeth; toes; leg deformities and, shortened arms with three (3) digits. I fight every day to maintain my independence. Reality will - sooner than later - dictate I enter permanent aged care at a much earlier age than for those midlife Australians who do not live with Thalidomide deformities. I have, on numerous occasions already, seriously considered moving into permanent care. I am acutely aware of, and am already grieving for, the loss of my independence.
2.55
The committee considers thalidomide survivors likely aged care requirements in greater detail in Chapter 3.
Arthritic conditions
2.56
As a result of their thalidomide injuries, many submissions made to the inquiry describe that thalidomide survivors are experiencing arthritic conditions affecting their: hands; wrist; toes; neck; back; shoulders; arms; knees; and hips. One thalidomide survivor told the committee they are experiencing 'significant arthritic deterioration' of their cervical spine. Fiona, a thalidomide survivor told the committee that she suffers from osteoarthritis of the spine which has resulted in spine curvature disorders, for which her surgeon is reluctant to operate on due to her osteoarthritis.
2.57
Some submissions to the inquiry indicate that the arthritic-related pain experienced by thalidomide survivors is increasing. One thalidomide survivor summarised the affect arthritis has on her:
The arthritis in my body is chronic and severe, and now significantly limits my range of movement, affecting every aspect of my life.
2.58
Ms Michelle French, who has previously accessed thalidomide survivors in her capacity as an occupational therapist, informed the committee that her assessments indicate survivors' secondary and tertiary health problems, including arthritis, are emerging as survivors age.
2.59
For some thalidomide survivors, surgery is necessary to treat their arthritic conditions. As the time of submitting, one thalidomide survivor was waiting for a 'clean out and arthritic scraping' of their left shoulder, a procedure that individual has had three times previously on the same shoulder. As considered earlier in this chapter, another thalidomide survivor underwent a double mastectomy to, in part, slow down the progression of her arthritis.
2.60
The committee notes that the evidence presented to this inquiry regarding arthritis appears consistent with overseas research findings that thalidomide survivors are experiencing high rates of arthritic conditions.
Dental deterioration
2.61
Thalidomide survivors told the committee that, to compensate being unable to use their upper limbs, many survivors use their teeth to assist them to perform daily tasks. Some thalidomide survivors use their teeth to open jars, to get dressed, and even to hang out washing as their malformed arms are not able to assist them in performing those tasks.
2.62
Survivors use of their teeth to perform daily tasks has resulted in the degeneration of their teeth. For example, one thalidomide survivor told the committee about the stress being placed on her teeth because of her injuries:
My teeth are wearing down because I have to use them, turning the key to open my front door. I have no strength in my arms to do this.
2.63
Other survivors reported that their teeth have deteriorated to the extent that they require dental care, and in some case dental surgery.
2.64
Thalidomide survivors' evidence to the inquiry regarding use and deterioration of their teeth appears consistent with the experience of survivors overseas. For example, a study by the University of Heidelberg in Germany found that 88.8 per cent of thalidomide survivors used their teeth 'in order to compensate for the lack of grasping function of the hands'. The report noted that opening bottles, carrying objects and operating levers damages the teeth, but also noted that thalidomide survivors may not be able to remove a regular dental prosthesis independently because they are unable to grasp it.
2.65
A recent survey of the health and wellbeing of thalidomide survivors in the United Kingdom found that '…just over a third have problems with dental health (often caused by the consequential damage of using teeth to dress, pick things up, open jars etc).'
Increasing fatigue and tiredness
2.66
Thalidomide survivors are experiencing increasing fatigue and tiredness as they age. Professor Janet McCredie told the committee that the pain experienced by thalidomide survivors causes '…extreme fatigue and interferes with all their daily activities.'
2.67
Evidence submitted to the inquiry indicates that fatigue disrupts thalidomide survivors ability to work; walk long distances; and ability to travel to visit family. Submissions to the inquiry noted that fatigue and tiredness is a general challenge for thalidomide survivors. The committee notes that evidence from overseas research has also identified fatigue as issue for thalidomide survivors.
Chronic pain
2.68
Thalidomide survivors often suffer from debilitating and chronic pain. From the evidence provided to the inquiry, it is clear that survivors' lives are severely impacted by pain. The reduction and management of pain is a significant challenge for survivors, and their experiences with pain reduction techniques are diverse, complex and, at times, costly.
2.69
Submissions to the inquiry highlight a range of different pain types experienced by survivors and often survivors experience chronic pain throughout their bodies. Thalidomide survivors are also experiencing pain associated with nerve damage. In some instances, survivors' pain is focussed on particular areas of the body, particularly areas of their initial thalidomide injury, or areas of their bodies which they have used to compensate for their thalidomide damage. One survivor told the committee that they have been, and continue to be, in pain every day.
2.70
Thalidomide survivors have also reported developing new forms of pain later in life. For example, a submitter to the inquiry described the pain and burning sensations which have developed in the feet of her thalidomide survivor partner in recent years. Another survivor told the committee that pains in his head and neck have recently become apparent.
2.71
Professor McCredie told the committee that findings of a substantial long-term study of thalidomide survivors in North Rhine-Westphalia, Germany suggest that survivors' late onset pain was from two primary causes:
…50 per cent of the pain was due to wear and tear on malformed joints and bones, entrapment, spondylosis and things like that, which occur in the normal community but are much worse in this [thalidomide survivor] community. But they said the other 50 per cent had the features of neurogenic pain—pain that was initiated in the nerve itself. That pain is extremely difficult, classically, to treat because it's a very persistent and a particularly strong character of pain.
2.72
Thalidomide survivors use a combination of treatments to manage their pain. Some of the pain management treatments described in evidence to the committee, include: prescription pain medications; chiropractic sessions; hydrotherapy; osteopathy; remedial massages; rest; and stretching exercises. Pain management treatment can be essential to survivors' health and maintaining their mobility independence. Chapter 3 of this report considers in greater detail the importance of pain treatments.
2.73
From the evidence provided to the inquiry, it is clear that thalidomide survivors' experience with chronic pain is reducing their ability to perform a range of everyday tasks and live independently. Severe and chronic pain restricts thalidomiders survivors: ability to work; to sleep or get out of bed in the morning; play with their children; cook; and use public transport.
2.74
Performing everyday tasks can also result in inordinate pain for survivors. For example, one submitter told the committee that routine air travel would result in their thalidomide survivor spouse being bedridden for up to a week.
Accidents and injuries
2.75
As a result of thalidomide induced birth defects and chronic health conditions, thalidomide survivors may experience accidents and injuries. Survivors told the committee that thalidomide injuries caused them to experience issues with their balance, and in some cases fall over.
2.76
In one case, a thalidomide survivor fell over whilst on public transport, and due to their arm malformations was unable to break the fall and consequently broke their nose. Another survivor told the committee:
Last year I had a fall and as I can’t stop myself from falling I hit my head on concrete pavers I broke my nose in three places and did significant damage to both Patella’s and Clavicle. I went to Flinders Medical Centre, and after being there for over 5 hours and after having X-Rays was told to go home and see my GP on Monday morning. The doctors didn’t understand Thalidomide disabilities and didn’t understand the severity of my conditions. I still haven’t totally recovered from this fall, either physically or emotionally, and sometimes have anxiety about going to unfamiliar places in case I fall again.
2.77
Rick, a thalidomide survivor, told the committee that every time he falls over he breaks his femur, which is inoperable due to his congenital malformations. On one occasion, this resulted in Rick being hospitalised for approximately two months.
2.78
Some female survivors told the committee that due to their functional limitations they had experienced burns to their breasts whilst cooking.
Psychosocial and mental health impacts
2.79
Thalidomide survivors often have severe physical impairments. They face deteriorating health conditions, chronic pain, and the impacts of early ageing. Survivors live with these challenges every day. These ongoing physical challenges also have psychosocial impacts for thalidomide survivors, which have in some cases resulted in serious mental health issues. Survivors have experienced the psychosocial and mental health impacts of thalidomide, alongside their physical injuries, throughout their lives. These impacts are evidence through survivors' experiences of depression, anxiety, being bullied and social isolation.
2.80
Ms Newbronner, submitted there are 'two primary reasons for poor mental health' amongst thalidomide survivors:
…the cumulative impact of living with a rare disability, and in particular the sense of ‘being different’ which this engenders; and the emotional impact of further loss of function, associated with secondary health problems. However, how these experiences affect people and how they make sense of them, is influenced by both individual circumstances (e.g. family responses or life events) and the wider societal context (such as access to care and support, in addition to access to social networks, labour markets, housing and financial resources).
2.81
Dr Debra Kennedy told the committee that there are several studies which demonstrate that thalidomide survivors experience increase rates of mental health disorders, and that mental health issues are likely to increase as survivors age and face new challenges. For example, a 2015 study of thalidomide survivors in Germany found that mental health disorders where twice as common amongst thalidomide survivor respondents that they were for the general German population. A later 2017 study of thalidomide survivors in Germany found that 47 per cent of the study participants had at least one mental health disorder in the four weeks prior to the study. A 2015 report on thalidomide survivors living in the United Kingdom found that over half of the respondents indicated their emotional wellbeing was worse, or much worse, than it was five years previously.
Depression
2.82
Evidence to the inquiry describes the experiences of thalidomide survivors in struggling with poor mental health, including being diagnosed and treated for depression. For some survivors, it is apparent that their experience with depression is a direct consequence of their thalidomide-induced disabilities.
2.83
One survivor described the depression she experienced early in life, and the difficulty she faced accessing counselling services:
After completing my Higher School Certificate (HSC) I spiralled into a very deep [clinical] depression. I felt I had no future. I had completed my secondary school studies - but for what? I could not nominate for any university courses as I had no way of getting to and from any campus. Who would want to employ me? … What could I do anyway?
I sought professional counselling, but it sapped me of my [limited] emotional reserves explaining my life and particularly, my Thalidomide disabilities. I could find no-one for whom I did not have to put them at ease - in order for me to begin exploring my depression.
2.84
The committee received evidence that some survivors have had suicidal ideations, and that suicidal ideations amongst survivors is increasing. One thalidomide survivor shared her experience with the committee:
I am one who has considered suicide. I was going to do it in my car. I was going to just drive. I would survive a work day, and then I would contemplate driving my car into a tree. And what stopped me was my GP once saying to me, 'Please don't ever try because I've had people that've done it, and they've survived and been worse off.' I thought: all I need to be is a quadriplegic on top of this!
Bullying and harassment
2.85
For thalidomide survivors who have experienced bullying and harassment, often due to their visible physical thalidomide injuries, there has been a significant emotional toll. Contributors to the inquiry described survivors' experiences with being verbally bullied and physically bullied during their schooling and formative years as: 'torture'; 'extreme'; and 'relentless'.
2.86
A survivor told the committee that the 'endless' and 'relentless' verbal and physical bullying they experienced in school contributed to their development of a speech impediment. The nick name 'half head' was used to bully one thalidomide survivor in high school:
…the bigger boys would grab me by my shirt bring me up to their face contort their mouth and laugh and call me half head. After this it caught on through the school and I could be anywhere in the school and I would hear ‘half head’. Because I was deaf in my right ear I had no idea where it was coming from but it was the most awful feeling. I lived with this daily and it got worse. I learned to stand up for myself and I would find myself fighting sometimes.
2.87
The experience of physical fights arising from bullying in school was also shared by other thalidomide survivors. The educational outcomes of at least one survivor were adversely impacted by bullying:
School was the worst, I was called names, picked on, laughed and starred at and talked about behind my back. I had no friends! I rejected school altogether and as a result fought all the time with my parents because I did not want to go. There was not one day that I didn’t get into a fight at school because I was no longer able to tolerate all the bullying. I cried a lot at night without my parents knowing and I pretended to go to school without my parents knowledge and my reading and writing skills lack because of this.
2.88
Some thalidomide survivors provided evidence to the committee that harassment and bulling has occurred later in life, and in some cases is ongoing. One survivor provided an example of the abuse they have experienced later in life:
One of my worst experiences of bullying was being “pissed on” by a drunk patron in the toilets at the Beaches Hotel whilst his drunk mate looked on and laughed. I was so shocked I didn’t know what to do or say. Fortunately, such extreme instances of abuse have been few. Most bullying has been directed at how I look and it was often the intention of the individual to make fun of me rather than cause physical harm.
2.89
Patricia told the committee that she is still bullied, and this can occur as soon as she leaves home:
I haven't even mentioned the bullying that I have endured—and still get, the minute I leave the safety of my home. People say the most horrid things to me as they walk past me. There was a time when I never left my house, for many, many months, as I did not want to get bullied by strangers.
Medical practitioners' dismissive and abusive behaviour
2.90
Some members of the medical fraternity were dismissive or insensitive to the parents of thalidomide survivors when they first realised that their child had been born with a disability. Thalidomide survivors also told the committee about a variety of concerning behaviours by health practitioners over the course of their lives. In some cases, thalidomide survivors reported behaviour that lacked empathy.
2.91
One thalidomide survivor told the committee about encounters with health practitioners when she was younger:
In 1967, I remember being carried into a doctor's room. He looked me up and down and said to my mum: 'Yep; she's a cripple. Now get out of my office.' In 1970, doctors wrote in reports that I had a 'beautiful smile', but that my aims in life were commendable but ridiculous.
2.92
The survivor went on to explain that, sadly, these kinds of comments were not confined to history. In 2002, she advised she had taken her sick daughter to see a specialist. When the specialist could not find anything wrong with her daughter, he added:
Have you ever thought she is just reacting to having a mother that looks like you?
2.93
In 2010, a radiologist told a thalidomide survivor:
You are too weird; I don't know what I am looking at. Go away.
2.94
This behaviour is consistent with the bullying and harassment that thalidomide survivors have been forced to endure throughout their lives. Another possible reason for such poor treatment is that medical professionals have little knowledge about thalidomide or its effects.
Social wellbeing
2.95
Contributions to this inquiry convey how for thalidomide survivors living with significant physical impairments, their social engagement and acceptance has been diminished. Thalidomide survivors described psychological effects of isolation and social exclusion as a result of their reduced mobility, or their requirements for assistance when outside of their places of residence.
2.96
Thalidomide survivors' bodies are often plainly different, and survivors' submissions show that this difference has not always been dealt with sensitively by others. For example, one survivor described the sense of shame she felt as a result of her thalidomide injuries:
I could not even utter the word ‘Thalidomide’ until I was well into my 20s, as my condition was spoken about in hushed tones around me, which had me believing Thalidomide was a ‘bad word’ and, one for which I felt shame.
2.97
One thalidomide survivor described feeling worthless: 'I felt and still do, sometimes, feel like a second class citizen. Not equal or worth anything.
2.98
Survivors' negative social experiences were described to the committee in a number of ways, including being 'whispered about' or 'pointed at' or being asked as an adult whether they are a 'thalidomide baby'. For some survivors, their social experiences led to them feeling of social isolation in their formative years, which was described as: not feeling 'normal'; unable to 'fit in'; or that they were being 'stared at'. One thalidomide survivor explained that, whilst their childhood was very happy, they began to experience social isolation at the age of 18 from reduced engagement with friends; the impact of this was described a '…nothing short of hopelessness and complete devastation.'
Committee view
2.99
As described at the beginning of this of this chapter, it is clear from the evidence provided to the committee that the health impacts of thalidomide for survivors are wide ranging and are often catastrophic. The committee recognises that the congenital malformations associated with thalidomide embryopathy are significant and diverse. For survivors, an immediate consequence of the thalidomide-induced congenital malformations are complex and multiple health conditions, including psychosocial and mental health impacts. The committee recognises that thalidomide survivors have to live with the impairments caused by both congenital malformations and consequential health impacts every day.
2.100
The committee considered evidence during the inquiry which clearly describes that the health impacts of thalidomide on survivors is ongoing. Contributors to the inquiry outlined how survivors outcomes are changing for a range of reasons. This evidence clearly indicates that as thalidomide survivors age, their congenital malformations and chronic health outcomes are deteriorating. This deterioration is exacerbated by the additional wear and tear placed on their bodies by necessarily contorting their bodies to perform daily tasks. The committee considers the evidence regarding thalidomide survivors evolving health requirements is particularly compelling.
2.101
From examining material for this inquiry, the committee considers there is inadequate knowledge regarding Australia's thalidomide survivors' health conditions. The committee is particularly concerned that survivors' health conditions are deteriorating, and there is not a coordinated body of knowledge to inform an understanding of Australia's thalidomide survivors' health requirements.
2.102
The committee recognises that the thalidomide survivors who are alive today have survived the severely damaging in utero effects of thalidomide, have survived the mortality associated with thalidomide embryopathy, particularly in the first year of life, and have survived the health complications associated with thalidomide injuries. The profound health impacts of thalidomide for survivors cannot be reversed, however the committee recognises that for survivors' complex health conditions to be ameliorated, intensive and specialised treatments and supports are required. As survivors age, their need for intensive and specialised supports can reasonably be anticipated to increase.
Lifelong consequences of thalidomide injuries
2.103
Thalidomide survivors' often severe physical impairments have a profound impact on their day-to-day quality of life. Whilst thalidomide survivors strive to maintain their independence and dignity—survivors have made adaptions in their lives to support this—it is evident that there are lifelong consequences of thalidomide injuries.
2.104
Due to their injuries, thalidomide survivors face challenges performing routine tasks, have faced challenges in accessing education and participating in the workforce, and experienced the financial burdens of forced early retirements and the high costs of healthcare and disability supports. Dr Kennedy described the complexity of challenges faced by thalidomide survivors:
While many individuals have done remarkably well in achieving their potential, particularly in terms of education and career, despite huge physical difficulties and societal and practical barriers, it's apparent that many still face significant challenges and have to deal with chronic physical and psychological problems, often without specialist assistance from healthcare professionals who have expertise and experience in dealing with their specific needs.
Difficulty performing everyday tasks
2.105
Thalidomide survivors submitted to the committee that their health conditions and impairments make performing everyday tasks difficult. The extent to which survivors face challenges performing everyday tasks is contingent on the severity of their impairments and health conditions. As one of the most common thalidomide-induced birth defects is phocomelia, many survivors are unable to easily do tasks that would ordinarily be performed with their limbs.
2.106
For thalidomide survivors experiencing chronic pain and arthritic conditions, performing tasks that involve other parts of their bodies, particularly their feet is difficult. Thalidomide survivors' impairments make it difficult for them to perform a wide range of everyday activities, including:
walking or standing for long periods (noting some survivors are unable to walk or stand at all);
sleeping due to chronic pain;
2.107
Patricia, who has severe thalidomide-induced upper limb malformations, told the committee that she requires assistance with day-to-day tasks:
Living in pain 24/7 is horrid and debilitating. I need help dressing, toileting, eating, opening doors, getting from A to B—basically, I need help for everything I do. It is very tiring being a thalidomide survivor. Everything I do is a struggle, and I don't get a minute to escape what thalidomide did to me.
2.108
Thalidomide survivors' submissions emphasise that performing routine tasks is becoming increasingly difficult for them due to their chronic health issues worsening, such as arthritis and stiffness, or chronic pain making it difficult to concentrate.
2.109
As thalidomide survivors' impairments and health conditions increasingly limit their functionality, survivors are often becoming more reliant on assistance from their immediate family members for day-to-day support.
Lost life opportunities and freedoms
2.110
There are some life opportunities and freedoms which are extremely difficult for thalidomide survivors to obtain, and some opportunities of which survivors have been robbed. Some survivors have been unable to have children, work in their preferred occupations, or engage in leisure activities.
2.111
One thalidomide survivor told the committee of the opportunities that they had lost as result of thalidomide:
It stole from me so many of the simple childhood opportunities that should have been mine, such as playing ball, skipping rope, playing marbles, even going to the bathroom by myself. In my teenage years, it stole my self-esteem, my ability to date, to play sport, to blend with my peers. As a young woman, Thalidomide continued to steal. I was unable to do simple house chores, apply for most jobs, study most degrees, travel freely, or dress and carry my babies.
2.112
Several submitters to the inquiry told the committee that survivors have never been able to return a hug from a loved one. Other survivors have struggled to find, or have never had, a romantic partner.
Impact on parents, family members and carers
2.113
Whilst thalidomide injuries are experienced by survivors, the impacts of those injuries are also borne by survivors' families. This is particularly true for those closest to survivors, usually their parents, partners; and children. Evidence received during this inquiry shows that families have experienced the emotional toll of thalidomide alongside their thalidomide survivor loved ones, and often experienced emotional trauma of their own. The family members of thalidomide survivors have made extraordinary commitments to contribute to caring for survivors.
Trauma and guilt of thalidomide survivors' parents
2.114
For the parents of thalidomide survivors, the birth of their thalidomide-affected child was a particularly difficult experience. The mother of one thalidomide survivor described the birth of her son as a '…trauma from which I have never recovered.' One thalidomide survivor told the committee of the negative impact that her own birth had on her parents:
…while my life was just beginning, my parent’s lives had been thrown into a spiral of shock, disbelief, and guilt. It wasn’t supposed to be like this for them … they were expecting a healthy baby that would complete their new family, and that would go on to lead a normal and happy life.
2.115
Other evidence received by the committee described a lifetime guilt experienced by the parents of survivors, particularly mothers, as result of taking a drug which would, unknown to them, have a severe impact on their child. Mr Fletcher indicated that relationship strain was a common experience for the parents of thalidomide: 'There were a lot of divorces, people shooting through and parents not coping. A lot of kids didn't make it through the first year.'
2.116
In some cases, the difficult experience of giving birth to a severely injured child may have been exacerbated by cruel and ill-considered comments from hospital staff. The mother of one thalidomide survivor was reportedly told by doctors that 'the kindest thing you can do for her is smother her while she is sleeping.' Another mother was reportedly told to send her child to an 'institution and forget about him'.
2.117
Given the immeasurable impact thalidomide has had on the lives their parents, many survivors have called for any apology specifically in recognition of their parents, many of whom are now deceased.
Carer responsibilities
2.118
As thalidomide survivors were growing up, they often had intensive care requirements which were taken on by their parents. Parents provided care to their thalidomide-affected children in variety of ways, including: assisting with toileting; 'assisting with all physical tasks' and providing emotional support.
2.119
As adults, thalidomide survivors have sought to live independently. However for daily tasks that survivors' impairments make difficult, survivors' family members have continued to provide assistance. For example, Andrew told the committee that he will need help to manage when his elderly parents pass away.
2.120
In some cases, immediate family members of thalidomide survivors have also become their full-time carers. In doing so, those family members have made considerable personal commitments and in some cases sacrifices, including stopping work:
In 2006 I stopped fulltime work to be my wife’s fulltime carer, yes, it was my choice, but with no funding and [as her] mum now [too] old [sic] to physically help [her] we had no other choice, as each time we asked the government for help we were told ‘we do not fund Thalidomide survivors’. … My concerns were mainly for [my wife's] safety as she was unable to unlock the doors on our home, I was frightened [of her] dislocating her hip again while dressing (happens from time to time when your feet are your hands and you are trying to put a bra or top on). On the nights I worked, she went to bed fully clothed and without eating more than a soggy sandwich that I had made many hours before. I could no longer stand seeing the danger I was putting her in every time I left her to work on my long shift, so I gave up work.
2.121
One thalidomide survivor told the committee that her daughter became her fulltime carer when her husband was no longer able to fulfil that role. To do this, her daughter had to relocate from interstate and leave behind her satisfying employment, home, and friends.
2.122
Some carers of thalidomide survivors' also appear to be experiencing adverse psychosocial impacts as a result of the intense care requirements leading to social isolation.
Education, workforce participation and forced early retirement
2.123
Thalidomide survivors' physical impairments have created permanent barriers in their access to education and employment. Many survivors have participated in the workforce, however, in recent years survivors have been forced to retire as a result of their deteriorating thalidomide injuries and worsening chronic health conditions.
Education
2.124
For some accessing education was a challenge as there were not appropriate supports available at local schools to support their additional requirements. A thalidomide survivor described this experience in her submission:
I had to be able to go to the toilet by myself before I could attend my local public school. I had to be able to feed myself at school because there were no Teachers Aides to help me.
2.125
Some survivors told the committee that schools would simply not accept them as a student based on their disabilities. Patricia told the committee that 'In 1970, no government school in all of Brisbane would accept me. Mum had to get a job to pay for my private school education.' The mother of a thalidomide survivor described that it was a 'battle' to get her thalidomide-affected daughter into a mainstream school, and that this proved 'extremely difficult as disabled children did not attend normal schools, they went to crippled children's homes and alike.'
2.126
Lance told the committee that his thalidomide injuries directly impacted on his ability to study: 'My ability to study was affected because of my deafness—many times I tried.' The mother of a thalidomide survivor told the committee that her son dropped out of a course in horticulture because he was lonely and started drinking.
2.127
As identified in the previous section of this chapter, the bullying of thalidomide survivors during their school years, in some cases, led to diminished educational outcomes for the those survivors.
Workforce participation
2.128
Many thalidomide survivors have faced challenges in accessing and remaining in the workforce, due to physical limitations imposed by their injuries, and the consequential deterioration of their health conditions which causing pain.
2.129
Some survivor told the committee that they were unable to secure a fulltime position in their chosen profession, due to their physical impairments, and that this had both a negative financial impact and an emotional impact.
2.130
Other thalidomide survivors' submissions indicate they have been discriminated against when applying for employment, due to misconceptions and prejudices regarding their appearance with visible congenital malformations. For Joanne, a thalidomide survivor, experience with employment discrimination began when she tried to get her first job:
As a young adult, my first experience of trying to get a job was very traumatic. It was a sales assistant job at Woolworths in Pitt Street, Sydney. I was filling out the forms when the person working there said, 'Sorry, you can't apply for this job.' I replied, 'But why?' Their response was, 'Because you might be working in the deli, and we can't have you working with food.' I was so upset that I called my sisters, who went straight there to stand up for me and tell them off. This destroyed my confidence and self-esteem, and it took me a long time to get over it.
2.131
When thalidomide survivors were able to enter the workforce they were often forced to retire early as a result of deterioration of their thalidomide injuries and health conditions. Andrew, a thalidomide survivor, told the committee of his experience losing his job:
I lost the job I used to have, because my vision got worse. I couldn't see properly. I couldn't see far away. Then I was unable to continue working. I wanted to try to work as a labourer for a company but I couldn't because of work, health and safety concerns.
2.132
Forced early retirement appears to be a common experience amongst the thalidomide survivor cohort. The committee received evidence that survivors had to retire early from careers in various fields, including: academia; the Commonwealth Public Service; graphic design and customer service. A 2016 report from the UK Thalidomide Trust found that, of the United Kingdom survivors studied: 41 per cent were unable to work due to health problems; 15.4 per cent were employed full-time; and 22 per cent worked part-time.
2.133
As noted above, those that care for thalidomide survivors also face challenges in remaining in the workforce. The spouses of some thalidomide told the committee that they had left their employment to care for their thalidomide- affected partner.
Financial wellbeing
2.134
The committee heard that the financial wellbeing of survivors has suffered as a result of their thalidomide injuries. Thalidomide injuries have meant that some survivors have had their education disrupted and have experienced difficulty accessing and remaining in the workforce. Many lack the financial resources to meet significant out-of-pocket costs associated with managing their thalidomide injuries. The risk to thalidomide survivors' financial wellbeing is exemplified in the submission of a survivor who was forced to retire early and worried about no longer being able to afford the family home:
Due to my body deteriorating, I was forced into an early retirement at the age of 49 and lost the opportunity to earn good money to pay off my loan. Unfortunately, my husband who has helped me every day for the last 39 years, was also forced into medical retirement thus putting us under financial strain. We don’t want to lose the family home that we have both worked hard for.
2.135
Many contributors to the inquiry noted thalidomide survivors face high costs for healthcare, such as out-of-pocket costs for surgery, and high costs for disability supports such as home modifications. Additional costs to thalidomide survivors also arise from less obvious sources. For example, one survivor explained their increased energy costs:
Other ‘unusual’ electrical expenses include the need for underfloor heating with floorboard covering, as I naturally need to be bare-footed daily to compensate for the lack of arms. The heating is also necessary to assist with the peripheral nerve damage caused by Thalidomide. Without the heating I experience excruciating pain which includes the sensation of pins and needles, and feels like walking on glass every day. I also require cooling as soon as the weather gets warm to assist with a heart disorder which can also be attributed to Thalidomide. Another added expensive to the running of my household.
2.136
Other contributors told the committee that thalidomide survivors faced increased energy costs as a result of heating and cooling their homes to assist in regulate their body temperatures. Costs can also arise from other unexpected sources, such as having to employ the services of a dress maker to alter clothes to fit the differing body of a thalidomide survivor.
2.137
For some survivors, the compounding effects of reduced income and high costs appear to have left them financially vulnerable. Submissions describe survivors' anxiety regarding their future financial wellbeing, particularly regarding whether they can afford costs associated with increasing support requirements. For thalidomide survivors who may require early access to aged care, concerns have been raised as to whether survivors can meet this cost. One survivor described their concern regarding their financial future:
…my biggest fear is not having the finances to pay for all the assistance about the home, any needed future medical treatment or possible modifications to my car or home.
2.138
The committee received evidence that some thalidomide survivors and their family members may also have low superannuation savings.
2.139
Chapter 4 of this report considers the adequacy of the financial support and compensation currently received by Australia's thalidomide survivors.
Committee view
2.140
The evidence provided to this inquiry has made clear that every aspect of the lives of most thalidomide survivors, has been adversely impacted by thalidomide. In hearing evidence from thalidomide survivors regarding the challenges they have faced throughout their lives, the committee particularly noted the difficulty of survivors' circumstances, and the resilience survivors and their families demonstrated in seeking to live life on their own terms.
2.141
The committee considers the evidence provided during the inquiry shows thalidomide survivors' injuries often made it difficult for survivors and their families to live on a day to day basis, to access education, to participate in the workforce, and to establish their financial security. The committee is concerned that following a lifetime of disadvantage, some thalidomide survivors may not have adequate resources to support themselves in the future, particularly as their impairments and health conditions worsen. The committee recognises that the uncertainty regarding their future has caused many thalidomide survivors, and their families, anxiety and concern.