Australian and international guidelines advise that there is no safe level of maternal alcohol consumption during pregnancy.
2.1
FASD is still not well understood in Australia and there are low levels of awareness about the risks of consuming alcohol when pregnant. This chapter examines this issue, and what we currently know about the link between alcohol and pregnancy, and the prevalence of FASD in Australia.
2.2
The next chapter will explore the range of prevention approaches that are needed to address the lack of awareness and understanding of FASD in the community and medical professionals, the availability of alcohol and the role of the alcohol industry.
Understanding FASD
What is FASD?
2.3
FASD encompasses a spectrum of disorders that can arise from alcohol exposure in utero. The spectrum covers physical, neural, behavioural and learning difficulties from mild through to severe symptoms.
2.4
For those with FASD, primary disabilities include poor impulse control, developmental delay, poor memory, difficulties with abstract concepts and difficulties with planning and following through on goals. These are symptoms of underlying brain dysfunction linked directly to brain damage, as distinct from a failure in rational decision making or choices.
2.5
Perhaps the most clinically recognisable manifestation of FASD is Fetal Alcohol Syndrome (FAS), which is characterised by physical abnormalities including of the face. In individuals with FAS, there has usually been exposure to alcohol during the first trimester of pregnancy, when the face and other bodily organs are forming.
FASD as a spectrum disorder
2.6
FASD includes a spectrum of possible conditions that may result from alcohol exposure in utero. As a spectrum disorder, FASD may be difficult to diagnose because its effects on function can vary from person to person and range from mild to severe.
2.7
Each condition, and its diagnosis, is based on the presentation of ‘characteristic features which are unique to the individual’ and which may be ‘physical, developmental and/or neurobehavioral’.
2.8
Dr Andrew Webster, Head of Clinical Governance at the Danila Dilba Health Service (NT), told the committee that the condition of FASD is incredibly broad and diverse and therefore:
It’s not like another condition where it’s absolutely clear that you’ve got it or you don’t. It’s a real spectrum. That’s why it’s called a spectrum disorder.
What causes FASD?
2.9
FASD is caused by prenatal exposure to alcohol.
2.10
Alcohol is a teratogen, a substance that causes fetal abnormalities. When a pregnant woman drinks alcohol, it crosses the placenta, and the fetus experiences a blood alcohol concentration similar to the mother.
2.11
When exposed to alcohol, the developing embryo and fetus may experience irreparable damage to the brain and other organs.
2.12
The severity of the harm caused by consuming alcohol when pregnant depends on how much alcohol the pregnant woman drinks, the pattern of drinking, and the stage of pregnancy when the drinking occurs.
How much is too much?
2.13
The Australian guidelines to reduce health risks from drinking alcohol (2020) advise that to prevent harm from alcohol to their unborn child, women who are pregnant or planning a pregnancy should not drink alcohol.
2.14
It is well established in the research that any amount of alcohol can risk harm to a developing embryo and fetus, and that the risk of harm increases the more alcohol the mother consumes and the more frequently she drinks.
2.15
The committee heard there are a variety of maternal and fetal factors that can affect the risks from drinking alcohol while pregnant such as genetic factors, metabolic rates, maternal diet and the woman’s biochemical and inflammatory responses to alcohol.
2.16
The National Health and Medical Research Council (NHMRC) notes that some genotypes confer an increased risk of harm and others provide protection:
Genetic factors influence maternal and fetal metabolic rates, their risk of reacting adversely to alcohol breakdown products, and their biochemical and inflammatory responses to alcohol at a cellular level. The likely variation in risk factors among mothers and babies makes it difficult to predict the level of risk from alcohol in each individual pregnancy.
Drinking during the different stages of pregnancy
2.17
There is a growing body of evidence on the influence of alcohol on all stages of fetal development, emphasising the importance of alcohol abstinence.
2.18
Research suggests that exposure to alcohol in early pregnancy may lead to structural brain abnormalities and other birth defects, whereas later in pregnancy alcohol exposure may result in defects in growth and neurological development.
2.19
Significantly, the Asking Questions about Alcohol in Pregnancy (AQUA) study of the longitudinal-term effects of common levels of alcohol consumption in the general community found measurable differences in facial shape with any alcohol exposure at any time.
Partner’s drinking behaviour
2.20
Evidence shows that the drinking habits of a pregnant woman’s partner will affect the pregnant woman’s alcohol consumption and that preconception drinking by a male partner directly impacts fetal development.
2.21
According to the Foundation for Alcohol Research and Education (FARE), research shows that 75 per cent of children with FASD have biological fathers who are heavy drinkers.
Pregnancies exposed to alcohol
Rates of alcohol exposure
2.22
Australia has one of the highest rates of prenatal alcohol exposure in the world.
2.23
A 2017 study found that 35.6 per cent of Australian women consume alcohol at some point during their pregnancy, compared to 9.8 per cent internationally.
2.24
This research is consistent with findings from the National Drug Strategy Household Survey, which reported that 1 in 4 women surveyed continued to drink alcohol after finding out they were pregnant. The Australian guidelines to reduce health risks from drinking alcohol suggest that self-reporting is likely to be underestimated.
2.25
The National Organisation for Fetal Alcohol Spectrum Disorder (NOFASD) suggested that as much as 60 per cent of Australian pregnancies are exposed to alcohol, most in the period before identification of the pregnancy:
Australian pregnancies are being alcohol exposed at alarming rates, very often in the early stages from conception to pregnancy identification. This places many children at risk of being born with FASD.
2.26
It is estimated that at least half of all pregnancies in Australia are unplanned. Women of child-bearing age who are sexually active and not using birth control effectively contribute to the 50 per cent of pregnancies which are unplanned in Australia.
2.27
Birth data suggests that the majority of Australian births are to women aged between 24 and 37 years. Amongst this group, data from the National Drug Strategy Household Survey suggests an increasing proportion of women are drinking at ‘risky levels’ at least monthly (defined as four or more standard drink per occasion).
Trends over time
2.28
According to data from the National Drug Strategy Household Survey, overall there has been a decline in the number of women drinking alcohol during pregnancy. Data from the 2019 survey showed that most Australian women (65 per cent) abstain from alcohol when pregnant, an increase from 56 per cent in 2016.
Demographics
2.29
According to a review of scientific literature by the National Drug Research Institute, Australian women who continue to drink alcohol during pregnancy are older and have a higher income, education and socio-economic status. They are also more likely to live in a rural and remote area.
2.30
Women under 25 are much more likely to stop drinking after they became aware of their pregnancy. A study of National Drug Strategy Household Survey data showed 91.3 per cent of women under the age of 25 would cease drinking when they learnt of their pregnancy, compared to 51.3 per cent of women over 36 years.
Factors influencing alcohol consumption during pregnancy
Drinking culture
2.31
Alcohol consumption during pregnancy must be situated within the broader context of alcohol consumption in Australia, the committee heard.
2.32
Inquiry participants commented on the ‘pervasive drinking culture’ in Australia, and the ‘social tolerance and widespread use of alcohol’ impacting on individual and community attitudes towards drinking during pregnancy.
2.33
Professor Jenny Gamble of the Australian College of Midwives observed that the broader drinking culture is impacting health practitioners ability to raise the issue of drinking during pregnancy:
We're a big drinking culture … If you yourself drink, drink to excess or drink during pregnancy—you have to situate health practitioners in the context of their broader environment, and all of those things confound their ability to raise issues if they conflict with personal views or personal experience. I think it's an unpicking thing, and we need to contextualise alcohol consumption in the whole community relative to the prevention and treatment of FASD.
Changing patterns of alcohol consumption in Australia
2.34
Patterns of alcohol consumption appear to have been changing over the past ten years, suggesting a move in Australians’ attitudes towards drinking.
2.35
According to the NHMRC, Australians are drinking less frequently and the proportion of people drinking daily or weekly has declined between 2007/08 and 2017/18. This is due largely to a drive by younger people, with consumption among those over 40 years of age relatively unchanged.
2.36
The most recent National Drug Strategy Household Survey found, however, that overall the proportion of people drinking at risky levels remains relatively unchanged. In 2019, 1 in 4 people drank at a risky level on a single occasion at least monthly.
2.37
In addition, the committee heard concerns about the increased risk of alcohol consumption during pregnancy due to the COVID-19 pandemic.
2.38
In its December 2020 report on alcohol, tobacco and other drugs in Australia, the Australian Institute of Health and Welfare (AIHW) noted mixed data on rates of alcohol consumption in Australian households during the COVID-19 pandemic. The report cites various studies, including polling by FARE which showed an increase in the consumption and sale of alcohol since early 2020.
Low levels of awareness of the risks
2.39
There is an alarming lack of community awareness of the risks of alcohol consumption during pregnancy, with studies suggesting that 60 per cent of women drink at any time in pregnancy, and 40 per cent are unaware that alcohol could harm the fetus.
2.40
A national survey of 1103 women found that, although 92.7 per cent of women surveyed thought that alcohol could affect the unborn child, 16.2 per cent of women did not know that the resulting disability could be life-long.
2.41
The National Alliance for Action on Alcohol stated that low levels of population awareness mean that women are not supported to abstain from alcohol during pregnancy.
Social and cultural pressure
2.42
Inquiry participants commented on the persuasive role of social and cultural pressures on a woman’s drinking behaviours during pregnancy.
2.43
According to one clinician that gave evidence to the committee, women face significant family and social pressures to drink:
I work in both the public system and the private system and I still have very well educated women for whom I provide care who ask: 'It's okay to drink, isn't it? I think it's okay to have the odd drink when you're pregnant.' I think part of it is wishful thinking. There's enormous community pressure with alcohol use, a lot of family and social pressure, and people ask you hopefully.
2.44
Ms Evelyne Muggli of the Murdoch Children’s Research Institute told the committee that women who drink throughout pregnancy tend to believe that the amount they drink is without harm, or they do what family and friends with healthy children have done.
2.45
A survey by NOFASD found that over half the women surveyed were encouraged to drink when they did not want to, a particular problem for women who chose not to announce their pregnancy in the first trimester. A third of women were encouraged to drink alcohol during their pregnancy.
2.46
According to FARE, alcohol consumption during pregnancy is seen as ‘somewhat acceptable’. This belief appears to be underpinned by several factors, including a view that drinking during pregnancy is commonplace and less risky because family and friends have drank alcohol in pregnancy before with no apparent consequences.
Environment and circumstances
2.47
Australian women living with poor mental health, high life stress, poverty, housing and legal issues, concurrent drug use and exposure to domestic and family violence and trauma are more likely to use alcohol during pregnancy.
2.48
The National Drug Research Institute noted that the presence of anxiety and depression also increases the risk of alcohol consumption during pregnancy, and therefore increases the risk of FASD.
2.49
Research also shows that women who drank prior to pregnancy or during a previous pregnancy, who smoke and use other drugs, are more likely to consume alcohol during pregnancy.
2.50
The committee heard that there are several consistent environmental factors contributing to alcohol consumption during pregnancy internationally. Studies in the US, Europe, New Zealand, Japan, Uganda and Australia have all shown that pre-pregnancy alcohol consumption, and exposure to abuse or violence, increases the likelihood of women using alcohol during pregnancy.
2.51
The National Drug Research Institute cited several studies demonstrating that women were at greater risk of continued and/or binge drinking where there is problematic drinking amongst family and friends:
These repeated findings provide strong evidence that psycho-education on the risks of alcohol consumption during pregnancy is as important for partners and family as it is for women.
Incorrect and inconsistent messages
2.52
The committee heard that Australian women are receiving inconsistent messages about the risks of drinking alcohol during pregnancy from their family, friends and health providers.
2.53
NOFASD found that half of the women it surveyed were told it is safe to drink during pregnancy. This information came from a wide range of sources – family, friends, other mothers including those who drank through pregnancy, online forums and doctors and obstetricians.
2.54
As discussed in further detail in Chapter 3, despite an increasing level of awareness of FASD amongst health professionals, the risks of alcohol consumption are not well understood and as a result, women have received incorrect and inconsistent medical advice.
Prevalence of FASD in Australia
Current estimates
2.55
The prevalence of FASD in Australia is still largely unknown and believed to be significantly underreported.
2.56
Current estimates suggest FASD affects five per cent of the Australian population, with a potential range of between two and nine per cent of babies born with FASD each year.
2.57
Modelling for the Food Regulation Standing Committee undertaken in 2018 concluded that there is a plausible FASD incidence rate of five per cent of the Australian population, drawing upon a range of international data and research.
2.58
The modelling notes that:
FASD prevalence in the US is estimated to be between one and five per cent of school children. Australia’s rate of alcohol consumption during pregnancy is three times that of the US and Canada; and
Other international prevalence estimates for FASD in school children are four to seven percent in Croatia, four to five per cent in Italy and six to 21 per cent in South Africa. Australia’s rate of alcohol consumption in pregnancy is also higher than these countries.
2.59
Mr Michael Frost of the AIHW commented on the challenge of prevalence figures in Australia:
There are studies that people do to try to estimate levels, and I understand there are some advanced studies in Canada and the United States suggesting a five per cent prevalence of FASD. That's an estimate that people think might apply in Australia as a similar country to those two countries, but we don't have anything at the moment that provides a broad estimate of FASD.
An intergenerational problem
2.60
Inquiry participants told the committee that FASD is becoming an intergenerational problem.
2.61
The Gold Coast Hospital and Health Service, Child Development Service, reported intergenerational FASD amongst its patients:
… we see within the clinic – on reviewing histories of the children – strong clinical indicators (including confirmed prenatal alcohol exposure) that biological parents had a high probability of having FASD.
2.62
Royal Far West told the committee that FASD is also having intergenerational impacts in regional, remote and rural communities:
For children, adolescents and families in regional, remote and rural communities, it is likely that FASD contributes to already high rates of developmental and health problems, with potential lifespan and intergenerational impacts.
Prevalence in vulnerable populations
2.63
FASD Research Australia estimates the prevalence of FASD to be 10 to 40 times higher amongst children in foster and state care, correctional facilities, special education, specialised clinics and First Nations populations than the general population.
First Nations communities
2.64
Whilst the misuse of alcohol has translated into a high prevalence of FASD in some First Nations communities, the true prevalence of FASD in this group remains unknown.
2.65
Fitzroy Crossing in the West Kimberley region of Western Australia (WA) has the highest reported prevalence of FASD in Australia with rates of FASD or partial FASD of 12 per 100 children. This is on par with the highest rates internationally.
Northern Territory
2.66
The Northern Territory (NT) has the highest per capita consumption of alcohol in Australia. Both First Nations people and the rest of the population suffer from the harms of risky alcohol consumption in the NT.
2.67
Overall, alcohol consumption by First Nations people in the NT is much higher than the national average for First Nations people.
2.68
However, FASD prevalence in the NT is unknown. Anecdotally, it is recognised that many NT children are experiencing learning difficulties, have difficulty controlling their emotions and impulses, and many young people are coming into contact with the juvenile system.
2.69
The Central Australian Aboriginal Congress reported that in Central Australia, the Australian Early Developmental Index suggests a very high number of developmentally vulnerable First Nations children and concluded:
While not all such children would have FASD, alcohol consumption either pre or post-birth would contribute a high proportion of these developmental vulnerabilities.
Children in the justice system
2.70
In WA, a data linkage study has shown that exposure to alcohol during pregnancy increases the risk of contact with the youth justice system. This is the case even adjusting for risk factors such as social disadvantage, indigenous status and poor academic performance.
2.71
A study conducted in the Banksia Hill Detention Centre in Perth, the only youth detention centre in WA, found a high prevalence of FASD (36 per cent) among detainees, most of which identified as First Nations peoples. This is the highest reported prevalence of FASD in a youth setting in the world.
2.72
Evidence before the committee suggests similar prevalence of FASD in the NT youth justice system. Dr Andrew Webster of the Danila Dilba Health Service commented on FASD in the Don Dale Youth Detention Centre in Darwin:
While we cannot yet provide rigorous estimates of the prevalence of FASD in the Don Dale Youth Detention Centre, early indications from our staff are that it is at least as high as that found in the Banksia Hill study in Western Australia—that is, likely greater than a third of all detainees have FASD.
Children in foster and state care
2.73
The committee heard that FASD is widely underdiagnosed in children in care.
2.74
WA research linking birth data to subsequent child protection involvement found that the greatest risk to entry into child protection was where mothers had an alcohol diagnosis during pregnancy. The research showed 13.4 per cent of alcohol-exposed children entered care compared to 2.1 per cent of controls.
2.75
Of the 590 children with FASD recorded in the national FASD case register between 2015 and 2019, approximately 80 per cent live in out-of-home care. This includes children living with grandparents (20 per cent), extended family (9 per cent) and in foster or adoptive care (49 per cent).
Social and economic costs of FASD
2.76
International research provides an indication of the scale of the economic and social burden of FASD.
2.77
FASD Research Australia cited research from Canada that conservatively estimated the cost of FASD to be $1.8 billion CAD:
This estimate considered direct costs associated with medical and health services, law enforcement, children and youth in care, special education, supportive housing, long term care, prevention and research, and indirect costs such as productivity losses due to increased morbidity and premature mortality. Productivity losses were the highest contributor at 41% of the total costs, followed by corrective services at 29%, and health care at 10%.
2.78
The Australian College of Midwives (ACM) submitted that the cost of FASD in Australia, just considering the health care and welfare systems, would be extensive:
The cost to the Australian health care and welfare systems is likely to be in the order of billions of dollars. This is supported by the fact that FASD is a lifelong condition associated with a multitude of comorbidities, many of which are known to increase a person’s access to acute and chronic health care.
2.79
The Gold Coast Hospital and Health Service, Child Development Service, suggested the potential cost of FASD in the Australian justice system would also be significant, noting:
the current costs of keeping a juvenile in detention is estimated at $1500 a day;
known rates of intellectual disability in the justice system are approximately 11 per cent; and
the findings of the Banksia Hill Detention study, referred above, which showed that 36 per cent of juveniles in detention were diagnosed with FASD.
2.80
According to FASD Research Australia, further investigation into the social and economic burden of FASD is needed in Australia, and it recommended further research using available WA government data:
This data linkage capability in WA provides a unique opportunity to understand the associations between FASD and adverse outcomes across health, child protection, education and justice, and assess their economic impact, and identify the implications for policy, service delivery and prevention.
Data on FASD and maternal alcohol consumption
2.81
Evidence before the committee outlined the importance of data on confirmed FASD cases, and maternal alcohol consumption, for prevention efforts.
2.82
However, the committee heard that collection of both types of data is problematic and does not provide a full picture of FASD prevalence or the extent of maternal alcohol consumption.
Data on maternal alcohol consumption
Birth notifications and state/territory data collection
2.83
Alcohol consumption is part of the mandatory data collection for birth notification forms. Notification forms are completed by midwives and other birth attendants, for every birth, using information from mothers, as well as hospital and other records.
2.84
The AIHW told the committee that each state and territory has its own birth notification form and/or electronic system for collecting data on each birth. That data is then forwarded to the relevant state and territory health departments to form the state or territory perinatal data collection.
2.85
The ACM explained that most women (99 per cent) birth within the mainstream health system and therefore their data is captured in ‘routine information collection processes’.
National Perinatal Data Collection
2.86
The National Perinatal Data Collection (NPDC) is a de-identified set of pregnancy and childbirth data provided by states and territories to the AIHW on an annual basis.
2.87
The NPDC has included a ‘voluntary non-standardised indicator on alcohol consumption’ since 2009, although only three jurisdictions have contributed this information to date (Tasmania, the ACT and the NT). The AIHW told the committee that ‘the quality of the data has not been assessed’.
2.88
In addition to voluntary data, the NPDC includes a subset of data items that form the Perinatal National Minimum Data Set. This is a set of data items agreed for mandatory collection and reporting at a national level.
2.89
The inquiry heard that from 1 July 2019, the NPDC has been expanded to include six standardised indicators of maternal alcohol consumption during pregnancy. This includes the number of standard drinks/frequency of consumption during the first 20 weeks of pregnancy.
2.90
The AIHW told the committee that states and territories have agreed to collect the data, which is consistent with questions in the national diagnostic tool (AUDIT-C), however it is voluntary, and data will not be available until mid-2021.
The need for mandatory national data collection
2.91
The Deeble Institute suggested the Perinatal National Minimum Dataset include mandatory collection and reporting of alcohol in pregnancy data, for contribution to the National Perinatal Data Collection.
2.92
In WA, prenatal alcohol use has been a mandatory item on the Midwives Notification System since 2017.
2.93
According to FASD Research Australia, mandatory inclusion of data on maternal alcohol use in the National Perinatal Data Collection has been recommended for many years.
2.94
FARE suggested that the Government support the AIHW to implement mandatory recording of alcohol use during pregnancy.
2.95
The NSW Government told the committee that it is ‘supportive of the development of metadata standards’ for reporting ‘subject to national consensus’.
Data on cases of FASD
National FASD case register
2.96
Cases of FASD are reported by paediatricians to the national FASD case register.
2.97
The national FASD case register is managed and monitored at a national level by the Australian Paediatric Surveillance Unit. This project is led by FASD Research Australia at the University of Sydney and funded by the Australia Government.
2.98
Several health clinics told the inquiry that they contribute to the data gathered by the Australian Paediatric Surveillance Unit.
2.99
The University of Queensland submitted, however, that there were clear problems with the data:
Diagnostic rates of FASD in Australia currently rely on paediatricians reporting to the Australian Paediatric Surveillance Unit. This will evidently be an underestimation of the true rates of diagnosis.
2.100
FASD Research Australia told the committee that the national FASD case register relies on renewable competitive grant funding, and that the Australian Paediatric Surveillance Unit continues to operate the national FASD register despite the previous grant period having ceased.
2.101
The Department of Health noted that funding over 2019–20 to 2022–23 had been allocated to continue the operation of the national FASD case register.
National Congenital Anomalies Data Collection
2.102
The AIHW told the committee that it is re-establishing the National Congenital Anomalies Data Collection. The collection, which ceased in 2008, includes data on babies who have a diagnosed congenital anomaly and will be expanded to include fetal alcohol syndrome (FAS).
2.103
The AIHW recommended that FASD be a notifiable condition in the state-and territory-based congenital anomaly conditions registers, a step which would improve the availability of data for the National Congenital Anomalies Data Collection.
2.104
However, Mr Michael Frost of the AIHW, acknowledged that the collection is focused on FAS only, and would require substantial work to achieve consistency from all jurisdictions noting not all collect the same data:
This would require substantial system changes and, possibly, legislative and financial commitments to ensure that happens. To my knowledge there are no active discussions to make that happen, but we did recommend it.
Other opportunities for improved data collection
2.105
The University of Queensland suggested that, given the availability of electronic health data, data linkages should be explored to capture diagnostic rates more efficiently and effectively.
Lack of national data
2.106
The committee heard that a lack of comprehensive national data on the prevalence of FASD is a major impediment to developing effective policy responses.
2.107
Emerging Minds told the committee that collecting data on prenatal alcohol consumption and the prevalence of FASD in Australia is crucial to understanding the scale of the problem and enabling the design of appropriate services and interventions.
2.108
However, data collection is limited by several factors including a lack of diagnostic expertise resulting in large numbers of children awaiting assessment as well as missed or misdiagnosis. Self-reporting of alcohol consumption via the National Drug Strategy Household surveys or midwives also contributes to data issues.
2.109
The Australian Medical Association expressed concerns that the lack of data is perpetuating a general belief that FASD is not a problem in general population and may contribute to tolerant attitudes to alcohol consumption during pregnancy.
2.110
The Jandu Yani Yu project, which provides FASD support to parents and carers in the Fitzroy Crossing area, commented that the focus on FASD and First Nations communities by policymakers gives the false impression that FASD is an ‘indigenous problem’:
Wider population screening, diagnosis and data collection is essential to elucidating the more accurate, cross-cultural challenge of FASD.
2.111
The National Fetal Alcohol Spectrum Disorder strategic action plan 2018–2028 recognises the difficulty of measuring FASD prevalence in Australia and suggests the need to ‘continue to improve national prevalence data on FASD’.
Committee view
2.112
The committee acknowledges the devastating impact of FASD for those living with FASD, their families and communities. Although there is a growing awareness of FASD, there is still widespread misunderstanding of the range of conditions and behaviours that may present in a person with FASD.
2.113
The committee notes that these conditions can affect each person in different ways and can range from mild to severe. Impaired decision making and impulse control for example has serious flow on effects for a person’s ability to participate effectively in education and the workforce, leading to lifelong consequences without appropriate intervention and support.
Alcohol and pregnancy
2.114
The committee is concerned with the high rate of prenatal alcohol exposure in Australia. Although declining over recent years, there is still 35 per cent of women who have drank at some point during their pregnancy, thus putting the fetus at risk of FASD. The committee considers there is a much greater role for partners, family and friends, and the broader community, to reduce harmful alcohol consumption and support women to abstain during pregnancy.
2.115
The committee notes the growing evidence regarding risk factors for women who are more likely to consume alcohol during pregnancy as a result of a range of domestic studies. This work has, and will continue, to contribute tremendously to preventative efforts, as explored further in the next chapter.
2.116
It is clear that a major factor influencing alcohol consumption during pregnancy remains a lack of awareness of the risks. Of particular concern to the committee is the drinking culture in Australia and prevailing and distorted views about what constitutes ‘harmful’ drinking in the context of a pregnancy and more broadly. There is clear need to do more to educate the community, and health professionals, about the risks of alcohol and pregnancy. This is further explored in Chapter 3.
Prevalence
2.117
There is a desperate need for prevalence data to support policy efforts. Without robust data on FASD prevalence, the committee notes that measuring progress against the National FASD strategic action plan and the National alcohol strategy 2019–2028 will be very difficult.
2.118
The committee is of the view that the national FASD case register is collecting valuable data on the number of cases of FASD. However, it continues to be reliant on short-term funding through grants. The committee considers that the lack of investment in this important piece of national infrastructure represents a significant gap in the Australian Government’s response to the Hidden Harm inquiry.
2.119
The committee recommends that the Australian Government provide long-term funding for the national FASD case register and develop a multi-year strategy and budget for data collection and related research activities.
2.120
The committee recommends that the Australian Government fund a FASD Prevalence Study to determine the national prevalence of FASD cases, including both known cases and those considered ‘at risk’ of FASD in the Australian population.
2.121
The committee commends the Commonwealth, states and territories for their recent move to collect standardised data on maternal alcohol consumption as a part of the National Perinatal Data Collection. However the committee has concerns that the reporting is voluntary.
2.122
The committee recommends that the Australian Government in consultation with State and Territory Governments implement mandatory reporting on standardised data for maternal alcohol consumption in the Perinatal National Minimum Data Set.
Social and economic costs
2.123
The social and economic costs of FASD in Australia are not yet quantified. However, the committee is of the view that considering conservative estimates of FASD prevalence, the costs are immense. The committee is concerned about the current and future impact of FASD on national infrastructure and resourcing associated with the justice system, education supports, healthcare services, and productivity losses.
2.124
The committee acknowledges the recent budgetary measures made by the Australian Government through the National alcohol strategy 2019–2028 and the National FASD strategic action plan. However, it considers that without having undertaken a robust study of the economic and social burden of FASD in Australia, the budgetary measures may not be appropriately targeted.
2.125
The committee recommends that the Australian Government fund an independent study into the social and economic cost of FASD in Australia.