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Boom or bust: What will FASD policy look like in five years? - Mr Michael Thorn

Dr James Lush, MC, says:

…Dr. Michael Thorn, the CEO Foundation for Alcohol Research and Education.

Please make him welcome.

[audience applauds]

Dr Michael Thorn:

Good afternoon and thank you for the introduction.

Let me acknowledge the Noongar people on whose land we have met these past three days. Thank you to them.

I have great deal of affection for the FASD community, a community of carers, researchers, policy workers, officials, doctors, and health professionals all with a shared interest in those with fetal alcohol spectrum disorder, lots of terrific people. It's a family, it behaves like a family with the occasional differences of opinion and regular squabbles but blood is thicker than water. And this family always comes together when it matters. I don't know you all but I've come to know many of you extremely well and some of you I now count as very good friends.

My association with FASD dates from 2011 when Australian governments were once again engaged in another one of their periodic but completely hopeless consultations with civil society organisations about national alcohol policy. At this meeting, public health leaders, mostly academic types it has to be said, were advocating cogent arguments for World Health Organisation endorsed public policy interventions, policies on price, availability and promotion but were largely dismissive of concern to balance these population wide interventions with niche issues such as alcohol's effects on unborn children. Their dismissal wasn't that they weren't concerned, just that they saw these as peripheral issues.

I saw it completely differently.

I saw alcohol exposed pregnancies as a policy opportunity, an issue where it would be difficult for the alcohol industry to advance their usual tropes about individual responsibility, personal choice and problem drinkers to forestall policy change.

As someone who has spent most of their career in public policymaking, it's clear that rarely does policy change happen quickly or rationally. Change largely occurs incrementally and haphazardly.

As the Australia Institute's Richard Denniss observed recently, we are often better advised to take the small offerings now rather than holding out for the big prize. To illustrate, he said, if the Greens had accepted Kevin Rudd's 2009 carbon pollution reduction proposal, today Australia would be celebrating a decade of sensible climate change policy.

Instead, Bob Brown rejected Labor's proposal as inadequate and look where we are today, no price on carbon, no national energy policy, no Bob Brown and a decade of disputation and despair in an environment where the summers are hotter, the storms are more violent and the existential threat to our planet grows.

The past decade of FASD policy I think proves my point.

Services have been established, health promotion campaigns conducted, and networks of carers and health professionals built.

Governments have appropriated money and slowly but surely put in place programs to respond to need.

Maybe not enough, but at least some.

We are certainly in a better place than a decade ago.

Today FASD's on the political agenda - arguably the most important achievement of our collective efforts, both here in Australia and in New Zealand.

How has this come about? Well, here's some thoughts.

In Australia, the house of representatives standing committee on social policy inquiry report 'FASD: The hidden harm' was critical. This committee chaired by Graham Perrett and including Dr. Sharman Stone set out a terrific plan for action which is as relevant today as it was in 2012 when it was released.

The work in WA's Fitzroy Valley was instrumental in our journey and I'd like to acknowledge June Oscar and Maureen Carter for initiating the Lililwan project. Lililwan brought together talented and dedicated people, brought money, brought expertise, brought legal advice, brought energy and hope in the fight for justice.

Arising from this project was Tristan's Story. I thank Tristan for being such a wonderful talent and filmmaker, Melanie Hogan for capturing the issues and his life so gently and clearly.

Research has continued at pace, PhDs have been conferred, conferences held, papers published, reputations made and our knowledge and understanding expanded.

Telethon Kids has been at the centre of this action and the CRE is a testament to this good work.

Liz Elliot, Carol Bower and many more researchers have been central to overall efforts.

There is now a formal network of carers and families supporting one another.

Sue Meyers has been tireless in bringing together- or bringing carer voices to the fore and for establishing NOFASD with Vicky Russell and Louise Gray.

Anne Russell from the Russell Foundation has been another key figure.

Important niche services have emerged like those in the juvenile justice system led by the likes of Catherine Crawford here in WA and Tony Fitzgerald in New Zealand.

The Commonwealth and a growing number of jurisdictions are providing funding support to a broad range of programs including clinical, diagnostic and prevention.

I give credit to Doug Shelton and James Fitzpatrick for their efforts in establishing and building a clinical network across Australasia.

Diagnostic services are now available in every jurisdiction.

The network of clinicians grows by the day and knowledge about FASD and how to respond continues to build.

The Commonwealth announced the new national strategy yesterday. It sets the right priorities, the enablers are good and is pleasing to see serious attention given to evaluation. The funding is modest, but it's new. The concern will be about how these funds are allocated and whose voices will be listened to. We certainly need to be listening to those of parents and carers.

These are some of the achievements and highlights of the progress that has been made.

FARE has played its role too. Our journey began in 2010 when FARE allocated a number of grants totaling a little over half a million dollars to the likes of Telethon Kids and Westmead Hospital to seed a number of small projects.

Then came our contributions to the FASD inquiry and later the development and launch in 2012 of the 2013 to 16 Australian National FASD Action Plan. We were significantly aided in putting this together by Sue Myers, Liz Elliot, Carol Bower, Anne Russell who we proceeded to poison, sorry about that Anne. Vicki Russell, June Oscar, Lorian Hayes and the Heathers, Heather Jones, Heather Douglas and Heather D'Antoine and others too, thank you.

The development of the plan did two other things: it built a coalition of interests that has grown into this family assembled here today and resulted in FARE becoming the Canberra end of this network and the policy leader and a key advocate.

We continue to heavily engage in government relations efforts especially in the Australian parliament, to redevelop policy and we continue to write submissions or at least my staff do.

FARE also pioneered public awareness campaigns, first with Pregnant Pause initially using our own funds and then with the assistance of the ACT government and later the Commonwealth. Pregnant Pause focuses on mums-to-be, their partners and families to encourage and support alcohol-free pregnancies. And the brand is now recognised around the world.

Another important program is Women Want To Know. Women Want To Know has now been in the field for more than four years and it's slowly but surely raising awareness among GPs, midwives and obstetricians about the need to talk to patients about alcohol and pregnancy because women want to know.

Finally, FARE along with our colleagues at Alcohol Health Watch in New Zealand has kept alive the 20 year campaign for mandatory pregnancy warning labels to be placed on all alcohol containers.

Believe it or not, we're nearly there.

I don't know what precisely FARE's role will be into the future. We undoubtedly will continue our focus on prevention and seeking big public policy change, reform of the way alcohol is taxed, availability controls, restrictions on marketing and promotion and better treatment services to close the 20 year treatment gap. It's likely we will escalate our health promotion and public awareness work and become more invested in campaigning for change.

But what now for the future of FASD? Will it be boom or bust? I'm sure you all know the answer because we are on the road to making FASD history.

But fair warning, there is still a hard road to home.

There will be more than the odd pothole and wrong turn to negotiate.

These will be the challenges of those who are destined to continue on this very important journey.

There are many opportunities to continue to advance the cause but it is more likely this will be by evolution rather than revolution.

And let me address what I think the future holds. I've got six points. There are others but these are the six that I kind of settled on.

First, there is the obvious unfinished business. The need to fix the problems with access to the National Disability Insurance Scheme, a persistent problem which should not be so hard to rectify. How about- we can help as Doug Shelton says by better aligning FASD diagnosis with the NDIS system of assessment and support.

The development of a national system of clinical diagnosis and its eventual integration into child development services is needed.

This will require the training of many more health and allied health staff if there is to be equity of access.

Services will need to be tailored and made fit purpose for urban, regional and remote parts of the country.

Establishing prevalence, undertaking routine screening, training, data collection, and program evaluation are all on the to-do list.

Public awareness campaigns remain paltry. More than 75,000 alcohol-exposed births each year is simply not good enough.

While Australian and New Zealand governments have given their imprimatur to mandating pregnancy warning labels, there remains a way to go before we see these appearing on alcohol containers in the way that we would wish. And of course, what is really needed is a comprehensive alcohol and health warning label regime. A system of rotating warning messages like we require for tobacco products because we know this is the most effective way to deploy health warning labels.

Second, there are major implications in diagnosing more and more people affected by FASD. This will place increasing pressure on a range of services including justice, education, health, and welfare.

If the current prevalence estimates are reasonably accurate this will result in significant new burdens for all these services. It will require them to adapt, develop new programs and find new ways of responding to a young person for example, ones thought to be autistic but now who actually has FASD. These services will need to be developed quickly if the obvious risk of creating secondary disabilities is to the averted.

Then there are the support service needs of families and carers who will fund this, who will coordinate the needs of these individuals and assist them and their families navigate the system through education and employment. It's critical that these families are supported in this difficult area.

Thirdly, there are the less tangible risks associated with the good progress we have made over recent years, the problem of success and yes, it does exist.

I foresee a number of potential and troubling threats to the harmony and goodwill that the FASD community currently enjoys.

There are lessons to be learned from the difficulties the mental health sector is experiencing as government and clinical responses have moved to the centre and become mainstream.

The squabbling over money, falling outs between once close colleagues, strong differences of opinion between experts about the science, service delivery models and priorities, the competition for the limelight and attention over the allocation of resources between prevention and treatment, urban versus regional and governments wanting to be seen to be doing something. There are opportunists and carpetbaggers to be found whenever new money is splashed around by governments. And no doubt in time we will see a few of those appear in this sector.

These are the real and present dangers which could derail the progress we are making.

Beware the risk of victimhood too, remain a coherent group, sit together and maintain those strong connections between carers, clinicians, researchers, and advocates.

Fourthly, there is the challenge of program scalability, taking niche to national. How do we take a small scale, well-funded research project in different areas or projects in different areas in justice, primary health and apply these to other areas and scale them up across jurisdictions. Population-wide programs can be notoriously difficult to establish and are frequently resisted by established program owners.

Fifthly, there are advocacy challenges. The most successful health policy issues are where there is a consistency of message from consumers, researchers and clinicians. And this requires everyone to become a policy advocate in some sense.

We must equip individuals and groups to advocate for policies that improve their lives and those of others, difficult to do when the demands of everyday life are great and with little relief. I'm sure that Sue Meyers will attest to the frustrations of carer advocacy.

As Jane Latimer said to me yesterday, we need the voices of powerful men to be added to this debate for them to become advocates too because as she said, they are practically non-existent at present. And I don't mean voices condescending and platitudinous. I mean men who are actually going to stand up and call for change and act for change.

Finally, there are threats posed by the alcohol industry. This is an industry which at a collective level is utterly shameless in denying the evidence and the merchandising of doubt about the harm caused by alcohol.

Let me remind you of Booze Before Babies, FARE's 2012 analysis of the alcohol industries submissions to the parliamentary inquiry into FASD, a report which showed 10 false claims made by various industry groups in their submissions to the inquiry including talking down the need for action and suggesting that current industry activities are sufficient in preventing FASD, a report that led to legal action against FARE for our exposure of these lies.

The alcohol industry would undo overnight all we have achieved if they could and we need to be vigilant and ready to counter their egregious activities at a moment's notice.

This is an industry, together with its public relations affiliates like DrinkWise, that is not to be trusted. Their relentless commercial interests cannot and should not be allowed to go unchecked.

I wanna close by returning to the theme of prevention, FARE's core business as it were. I have said that we will continue our health promotion work, Pregnant Pause and Women Want To Know. And with any luck begin new programs targeting alcohol's contribution to long-term health harms such as cancer, cardiovascular disease and dementia.

Will FARE continue its close association with FASD? I think yes, because the truth is that FASD is one aspect of a much wider range of alcohol-caused problems. It provides advocacy leverage because the stories resonate with decision-makers and the political class. It's an issue which cannot be ignored because the stories are always personal and powerful.

Let me explain my point about prevention.

But first allow me to show you a video about FARE's and our colleague associate organisations, End Alcohol Advertising in Sport campaign and I'll leave you wondering why I'm doing this.


- [Steve] I think sports plays a major part in our society.

I think sport is very important for young people, I think it's very important for families to be involved. It's a social outlet for families. It's an opportunity for families to engage with other families, to meet new people.

- [John] We know that exercise is the best thing you can do for physical health and it's the best thing you do for your mental health and when you play sport with other people it's the best thing you can do for your social health.

- [Clover] I love sport, I love going out, just watching kids play on a Saturday morning in Australia. There's nothing better. And it'd be great to think that their future doesn't mean that alcohol and sport are tied together forever for them.

- [Mick] More importantly now I look at the impact on young kids and I see my grandchildren and my first thought is how does this impact them? 'Cause I see how affected they are by things that happen on TV. This started me thinking about the impacts that certain products have on these kids.

- [Rod] Kids are massively impressionable particularly around their sporting heroes and their favourite sport.

- [Cheryl] There is no doubt that the elite professional football players, tennis players, any sportsmen or women, they're seen actually not only as role models, of course they're role models, they're seen as gods and goddesses and particularly by young children but actually by all of us. And there is no doubt that how they act, we want to imitate, we want to emulate them. So if they walk out into the middle of a pitch as a walking billboard for alcohol or if they walk out having several drinks before a game we think we can do that as well.

- [Prof Rob] The problem with alcohol advertising in sport at the moment in Australia is it's such a big part of sport and sport is helping to make a unhealthy alcohol consumption a natural part of sport.

The kings of Australian sport have become the ambassadors of booze and that's not a good thing for our kids.

- [John] The very vast majority of responsible adults would believe that enticing children into early participation in drinking alcohol is not in the interests of those children, either in terms of their values, their behaviours, and their health.

- [Prof Rob] And we know, and we know from measuring and watching kids over many years that the more and earlier you get to them about alcohol then the more likely they are to drink in the long run. They advertise for a reason and that's to get people to drink more. And what unfortunately happens is that often it's those that have a problem that do drink more and that's where we get so many problems in our community.

- [Rod] Point is, why are we promoting it at five o'clock in the afternoon when we know children are watching? Why don't we leave that til later in the evening when the kids have gone to bed? Advertisers are smart. They spend their dollars where they're gonna get the most traction. And if they're spending it where they know the audience is made up of young people then you can't tell me that's not their target. That's their target.

- [Steve] We certainly have the responsibility to make sure they're in control of, I suppose, promoting safe drinking levels also promoting what's wrong with regards to alcohol. And I think by taking the alcohol industry's money they're held to the alcohol industry's values and unfortunately that's not the values of what the community expects.

- [John] Iconic institutions like Cricket Australia have a wonderful opportunity to be very much to the fore in promoting all that's best about role models, about sportsmanship being exemplars in every aspect of raising young people.

- [Dr Ric] I think in the end there is an obligation for sports stars to represent more than just the money or whatever else might be part of the sporting ethos. I would hope fair play, cooperation, working together, being a team player are things that we want to present to young people as being important.

- [Clover] So I'd really like to see some of our bigger codes come forth make a statement, show that they, I think, care and value the kids, the families and supporters that are there by trying to help them create a healthier life and healthy environment for the people that are supporting them.

- [Steve] We want families in our game. And I think if you tag alcohol sponsorship away from sport I think we're gonna get more families into the game and they'll see that NRL's heading in the right direction I don't think being involved in alcohol industry's actually heading in the right direction and families see that.

- [Mitch] I think you have to look past money at the end of the day. We have to be out there to represent young kids and give them a good image and something to live up to.

- Hello, I'm Mick Malthouse.

- I'm Rob Butterss.

- I'm Mitch Edwards.

- Hi, I'm Steve Ella.

- I'm Cheryl Bart.

- My name is Clover Maitland.

- I'm Rob Moodie.

- Hi, I'm John Alexander.

- I'm Ric Charlesworth.

- My name is John Inverarity

Please join me in this campaign to end alcohol advertising in sport.

[upbeat music] [audience clapping]

Dr Michael Thorn:

My first thing I'm asking you is sign up to the campaign. Point your phone at the QR code and it will take you directly through to the website where you can sign up. That's important to me.

It's not the most important thing 'cause the second thing I'm want to do is return to the big question of preventing alcohol harm. Because the clear consensus here at this conference is that FASD is preventable.

However, the approach to prevention needs to be more than one simply targeted at women drinking during pregnancy. It needs to be about changing Australia's drinking culture, a culture that is a function of an alcogenic environment where alcohol is part of everyday life from celebration to commiseration. An environment saturated with alcohol advertising and marketing where we are repeatedly told drinking is the norm.

We know that policy change is hard and it takes time but it is possible if people are motivated and mobilised.

There is a simple prescription to stopping alcohol harm, increase the price of alcohol through a reform system of taxation, reduce its availability particularly packaged liquor and restrict its marketing and promotion especially that which targets children and young people. These are the big policy interventions that will reduce the prevalence of FASD and other alcohol harm.

However, convincing people including our political leaders to act on this prescription is hard. The End Alcohol Advertising in Sport campaign is a manifestation of FARE's thinking about how to achieve the essential policy change required to prevent harm including alcohol exposed pregnancies.

Overwhelmingly, Australians hate the association of alcohol brands with major sport, especially when children are exposed to this prolific marketing. Nine out of 10 want the exemption lifted that allows alcohol ads to be broadcast during children's viewing times. End Alcohol Advertising in Sport is designed to end this exemption.

While it's a modest policy objective, it represents a means to an end. This is to build a supporter base that can be mobilised to bring about wider reform.

FARE will continue out its efforts to fix the way alcohol is taxed and we will work with states and territories where the opportunities emerge to address the increasing availability of alcohol but it is hard to engender community outrage for tax reform and likewise for supply side availability controls.

On the other hand, people are moved to take action about alcohol advertising as they are with gambling and junk food advertising, especially that which targets children. End Alcohol Advertising in Sport is a campaign we can win and when we do, we can move on to these other issues.

Our interest in FASD should not preclude us from concern about the wider determinants of alcohol harm, the cheap booze, its incredible availability, it's prolific marketing and promotion.

Because after all it's the drinking that causes the problem.

There are clearly particular needs for the FASD community but it is no more or less than the needs of those affected by alcohol related family violence, child neglect, street violence or those affected by alcohol-caused cancer, cardiovascular disease or dementia.

The FASD community should play a role in tackling the bigger problem of alcohol harm by supporting the WHO's recommended population-wide interventions because in doing so, the number of alcohol exposed pregnancies will be reduced.

If we capitalise on the boom for FASD, the alcohol problem can be busted.

Good afternoon and thank you.

[audience clapping]