Thank you for your email requesting recent studies or data indicating the incidence of Fetal Alcohol Syndrome in Australia




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w: www.nofasard.org.au

Mr Craig Milton

Policy Officer

Winemakers' Federation of Australia
Dear Craig,
Thank you for your email requesting recent studies or data indicating the incidence of Fetal Alcohol Syndrome in Australia.
The answer to your query is not straight forward.
It is important that you firstly understand that Fetal Alcohol Syndrome is only one (and the least common) of the adverse outcomes of prenatal exposure to alcohol and to only focus on incidence rates for the syndrome alone does not reflect the true extent of possible harm resulting from prenatal exposure to alcohol.
Fetal Alcohol Spectrum Disorders (FASD) is the umbrella, (educational) term now being used to describe the range of disabilities and a continuum of effects that may arise from prenatal exposure to alcohol. FASD is not a clinical diagnosis in itself but represents a range of diagnoses that fall under the spectrum. These diagnoses are Fetal Alcohol Syndrome (FAS), partial Fetal Alcohol Syndrome (pFAS), Alcohol Related Neurodevelopmental Disorders (ARND) and Alcohol Related Birth Defects (ARBD). i

We know from the results of international studies that for every child born with Fetal Alcohol Syndrome, at least another 10 are born with one of the other diagnoses that fall under the spectrum, so Fetal Alcohol Syndrome is really only the tip of the iceberg. ii


Fetal Alcohol Syndrome is also often referred to as the “most extreme form” of FASD. This description is not shared by parents/carers of individuals with FASD or by Health Canada & the National Institutes of Health (USA). Health Canada in its Guidelines for diagnosis more accurately describes FAS as the “most visible presentation”. iii While the diagnosis of Fetal Alcohol Syndrome usually indicates more serious clinical findings and physical effects it does not necessarily mean more severe life outcomes for affected individuals. Irrespective of whether or not there are visible clinical indicators of FAS, individuals who have been prenatally exposed to alcohol may still have significant damage to the brain that impacts on their quality of life. iv
In Streissguth’s Secondary Disability studies, having a diagnosis of Fetal Alcohol Syndrome rather than one of the other conditions that fall under the spectrum was a universal protective factor for lessening the debilitating life-long secondary conditions associated with FASD. v
The latest international studies estimate that the current prevalence of FASD in populations of younger school children may be as high as 2-5% in the US and some Western European countries. vi
Although a large proportion of Australian women of child-bearing age consume alcohol, often at high levels and over half of pregnant women (58.7%) drink alcohol during pregnancy, to date, Australia has never carried out specific population based studies to ascertain the true prevalence of FASD. vii
The few retrospective studies that have been carried out in Australia have focused mainly on Fetal Alcohol Syndrome and not the full spectrum and it is widely acknowledged that FASD is under-diagnosed and under-reported in both Indigenous and non-Indigenous children and that diagnosis is often delayed. viii ix x An example is the study conducted by Bower et al in 2000 that estimated the incidence of Fetal Alcohol Syndrome in Australia, at 0.02 per 1000 live births for non-Indigenous children and 2.76 per 1000 for Indigenous children.xi Subsequent studies in the Northern Territory and nationally through the Australian Paediatric Surveillance Unit (2001-2003) found similar or lower rates. xii xiii Fetal Alcohol Syndrome has been documented to occur in Indigenous children more commonly than in non-Indigenous children. There is concern that there may be some diagnostic bias in Indigenous children. xiv
There are a number of possible reasons why FASD is invisible in Australia in comparison to other nations. It would be extremely misleading to report the above figures without also reporting the following information.


  • FASD (including FAS) doesn’t appear on the Government list of registered disabilities.

  • There is no Medicare number for rebate for the diagnosis.

  • There are no Australian Clinical Guidelines for diagnosing FASD.

  • There are no specially trained multidisciplinary diagnostic teams and the medical profession has received very little information about the disorder in their medical school training.

  • Fewer than half of Australian health professionals routinely ask women about alcohol consumption in pregnancy or routinely provide information to pregnant women about the effects of alcohol use in pregnancy. xv xvi

  • Less than 20% of Australian health professionals (including paediatricians) know the four essential criteria for the diagnosis of FAS and over half are concerned about stigmatising the child or the family with a diagnosis of FAS. xvii

  • A tiny proportion (less than 5%) of health professionals feel very prepared to deal with FAS. xviii xix

While researching this response I visited the Winemaker’s Federation of Australia website and noticed that your sector has made a commitment to promote healthier consumption patterns of wine by Australians. I was therefore extremely disappointed and puzzled that you have the outdated NHMRC Australian Alcohol Guidelines (revoked on the 25th Feb 2009) displayed on your website.


I also came across the joint submission from yourselves and the Australian Wine Research Institute to the Food Standards Australia New Zealand Application A576 - Labelling of Alcoholic Beverages with a Pregnancy Health Advisory Label. I am concerned that your submission is misleading in its claims relating to the incidence of FASD in Australia and has also downplayed the risks associated with alcohol use during pregnancy.
Health advisory labels about alcohol use in pregnancy have absolutely nothing to do with instilling unnecessary anxiety, fear and guilt in pregnant women but rather they have everything to do with giving pregnant women information that will enable them to make informed choice about whether they wish to expose their unborn child to a known neurotoxin and teratogen. It is a woman’s right to be given information about alcohol’s potential harms and I regard withholding this information as immoral.
FASD is very real to the hundreds of individuals that my organisation represents. Those us who are parents supporting children, adolescents and adults who have been neurologically damaged by prenatal exposure to alcohol struggle daily to deal with the unacceptably high levels of functional difficulty that severely impacts their quality of life.
Please don’t hesitate to contact me again should you require any further information.
Kind regards,
Sue Miers
Sue Miers AM

Spokesperson


CC

FSANZ


ADCA

Alcohol Healthwatch NZ




i (National Consensus Statement released by NOFAS April 15th 2004, Washington DC)

ii May et al Prevalence & Epidemiological characteristics of FASD from various research methods with an emphasis on recent in-school studies. 2009 Wiley-Liss, Inc. Dev Disabil Res Rev 2009; 15:176-192.

iii Chudley et al CMAJ • March 1, 2005; 172 (5_suppl). doi:10.1503/cmaj.1040302.Fetal Alcohol Spectrum Disorder Canadian Guidelines for Diagnosis

iv Mattson & Riley Abnormal Brain Area (in Basal Ganglia) Found in Children Prenatally Exposed To Alcohol Neurotoxicology and Teratology, Vol. 16(3):283-289, 1994]

v Streissguth et al 1996 Understanding the occurrence of Secondary Disabilities in Clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE) Final Report Centers for Disease Control & Prevention

vi May et al Prevalence & Epidemiological characteristics of FASD from various research methods with an emphasis on recent in-school studies. 2009 Wiley-Liss, Inc. Dev Disabil Res Rev 2009; 15:176-192

vii Bower C, Silva D, Henderson TR, Ryan A, Rudy E. Ascertainment of birth defects: the effect on completeness of adding a new source of data. J Paediatr Child Health 2000; 36:574-576

viii Harris, K. R., & Bucens, I. K. (2003). Prevalence of fetal alcohol syndrome in the Top

End of the Northern Territory. Journal of Paediatric Child Health, 39, 528-533


ix Allen, K., et al. Estimating the prevalence of fetal alcohol syndrome in Victoria using

routinely collected administrative data. Australian and New Zealand Journal of Public

Health, 2007. 31(1): p. 62-66



x Elliott EJ, Payne J, Morris A, Haan E, Bower C. Fetal alcohol syndrome: a prospective national surveillance study. Arch Dis Child. 2008; 93:732-7

xi Bower C, Silva D, Henderson TR, Ryan A, Rudy E Ascertainment of birth defects: the effect on completeness of adding a new source of data J Paediatr Child Health. 2000 Dec;36(6):574

xii Harris, K. R., & Bucens, I. K. (2003). Prevalence of fetal alcohol syndrome in the Top

End of the Northern Territory. Journal of Paediatric Child Health, 39, 528-533


xiii Elliott et al Fetal Alcohol Syndrome: a prospective national surveillance study Arch Dis Child 2008;93:732-737 doi:10.1136/adc.2007.120220


xiv Bower C, Silva D, Henderson TR, Ryan A, Rudy E Ascertainment of birth defects: the effect on completeness of adding a new source of data J Paediatr Child Health. 2000 Dec;36(6):574


xv Payne J, Elliott E, D'Antoine H, O'Leary C, Mahony A, Haan E, et al. Health professional's knowledge,

practice and opinions about Fetal Alcohol Syndrome and alcohol consumption in pregnancy. Aust N Z J

Public Health. 2005; 29(6):558-564




xvi Elliott E, Payne J, Haan E, Bower C. Diagnosis of fetal alcohol syndrome and alcohol

use in pregnancy: a survey of paediatricians’ knowledge, attitudes and practice. Journal

Paediatr Child Health. 2006; 42:698-703




xvii Payne J, Elliott E, D'Antoine H, O'Leary C, Mahony A, Haan E, et al. Health professional's knowledge,

practice and opinions about Fetal Alcohol Syndrome and alcohol consumption in pregnancy. Aust N Z J

Public Health. 2005; 29(6):558-564




xviii Payne J, Elliott E, D'Antoine H, O'Leary C, Mahony A, Haan E, et al. Health professional's knowledge,

practice and opinions about Fetal Alcohol Syndrome and alcohol consumption in pregnancy. Aust N Z J

Public Health. 2005; 29(6):558-564




xix Elliott E, Payne J, Haan E, Bower C. Diagnosis of fetal alcohol syndrome and alcohol

use in pregnancy: a survey of paediatricians’ knowledge, attitudes and practice. Journal

Paediatr Child Health. 2006; 42:698-703







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