The Time is Now for Renewed Leadership on Preventing Alcohol-Exposed Pregnancies
9/9 is international FASD Awareness Day – signifying the importance of going alcohol-free during the 9 months of pregnancy. But this year is not a typical year.
Sandra Butcher and Joanna Buckard
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Are you ready for the tectonic shifts that are happening in England in the coming days and months as National Institute for Health and Care Excellence (NICE) and the DHSC take steps to wrench their policies about FASD (Fetal Alcohol Spectrum Disorder) into line with international scientific consensus? Research shows FASD may be at least twice as prevalent as autism (Department of Health & Social Care: Fetal alcohol spectrum disorder: health needs assessment), September 2021). Industry leaders should now be rolling up their sleeves to plan how to use this moment to demonstrate their social responsibility.
Following on Scotland’s 2019 guideline for diagnosing children and young people prenatally exposed to alcohol, NICE will soon be releasing its first-ever Quality Standard on FASD. The current publicly available draft identifies areas for improving quality of care for the advice given to pregnant women, how alcohol-exposed pregnancies are noted, the assessment and diagnosis of FASD and care management plans for those with FASD. All Clinical Commissioning Groups and NHS Trusts must ‘have regard’ for NICE Quality Standards, which lay out measurable indicators for how they are meeting these targets. In addition, the Department of Health and Social Care is releasing its first FASD Health Needs Assessment for England on 09/09. Public Health England also recently published a High Impact Area Document on reducing harm from alcohol use in pregnancy.
These steps signify a sea change in official public health policy across the UK about alcohol in pregnancy and FASD. Most significantly, these official bodies are recognising the full FASD spectrum, walking away from their prior focus on “Fetal Alcohol Syndrome” – the old-school emphasis on certain facial features that affect less than 10% of those with FASD. The diagnosis now will be “FASD” with or without sentinel facial features. They are operationalizing the 2016 CMO guidance. A new FASD: Preferred UK Language Guide shows changes to our language must follow.
Whilst the vast majority of the UK market adheres to the Portman Group’s best practice guidelines, which includes carrying a pregnancy warning message or symbol and unit information, with 97% of products in the UK carrying the information (Alcohol Health Alliance, Drinking in the dark, August 2020), in our view the reality shows these don’t go far enough. The images on wine in particular are often too small are sometimes confusing and could be improved.
FASD is preventable and yet new UK-based research, a gold standard ‘active-case ascertainment’ study, shows that between 1.8% – 3.6% have FASD. Though this study was small-scale and had limitations due to COVID, it is in line with a much larger study done in the USA. In Scotland, meconium sampling indicated that 42% of pregnancies were alcohol-exposed. The UK ranks 4th in the world for alcohol use in pregnancy. This is no time for complacency.
Why is alcohol use in pregnancy so often left out of discussions on alcohol harm and/or ignored when it finally is addressed? Let’s change that. Whilst some alcohol producers have engaged with this agenda, we believe this will be a defining moment for the whole industry. How industry responds to the policy shift will be a defining moment.
Industry can do much good in this space, alone or in partnership with government and charities and we have seen some good examples in other countries. In Australia, Drinkwise, a partnership between industry and public health entities, has a public education campaign which also makes material available for schools. Sandy’s Law in Ontario has pregnancy warnings at point of sale. In British Columbia liquor stores actively promote FASD awareness. Pregnancy kits in pub toilets have been trialed. In this country we believe Drinkaware could take the lead with ads on train platforms, on busses, in movie theatres and on tv. There are some good examples of cooperation with industry here in the UK for example National FASD educates midwives and other practitioners with support from Diageo but the funding available to the Third Sector is a drop in the bucket compared to the need. So, there is plenty of scope for industry to further engage and help to combat FASD
The media could also do much more to educate the public on the risks and industry can play an important role in encouraging this too. Tragically not everyone knows that alcohol-exposed pregnancies risk miscarriage, premature birth, still birth, Sudden Infant Death Syndrome and Fetal Alcohol Spectrum Disorder (FASD) – preventable lifelong damage to the brain and body.
National FASD stands ready to work with interested leaders from industry to see how collectively we can meet this historic moment. We can go far to reducing alcohol use in pregnancy if we set our sights higher.
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Sandra Butcher is Chief Executive of The National Organisation for FASD and mum to a 17-year old with FASD
Joanna Buckard is the Specialist Projects Co-ordinator with the The National Organisation for FASD
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To note that the views of this blog represent those of the authors only and do not represent the policy of the Portman Group.