We know intuitively that prevention is better than cure. In fact, there might even be a saying about it. Unfortunately, however, the systems we live within greatly undervalue prevention. Spending on prevention as a proportion of the health budget in Australia has been less than 2% per annum. In late 2021, the National Preventive Health Strategy 2021-2030 proposed boosting this to 5% across all levels of government by 2030 (Commonwealth of Australia Department of Health, 2021).
This is an excellent goal, but with research showing that $14 is returned in savings for health and social care for every $1 invested in preventive health programs (Masters, Anwar, Collins, Cookson, & Capewell, 2017), not really representative of how much could be spent beneficially. Prevention investment really is the gift that keeps on giving. So by investing more in prevention, the savings will free up more budget for helping with the cure. A case in point is reducing alcohol use during pregnancy to prevent Fetal Alcohol Spectrum Disorder (FASD).
Proven return on investment
I have been fortunate to work in FASD prevention for the past seven years. Caused by alcohol exposure during pregnancy, FASD is a serious lifelong neurodevelopmental disorder potentially impairing multiple domains, including cognitive skills, memory, learning and behaviour regulation with subsequent difficulties completing education, finding employment, and justice system involvement.
Despite FASD prevention being an Australian government priority, programs helping women at the highest risk of an alcohol or drug (AOD) exposed pregnancy are rare. Increasing the spending on appropriate programs can break this typically intergenerational cycle, as women using AOD during pregnancy often had parents who misused AOD (87%), were abused as a child (65%) or experienced foster care (25%) (Grant & Ernst, 2018). In WA, 30% of children in youth detention have FASD (Bower et al., 2018) and more than 40% of a FASD cohort experienced out of home care (Paper under review). Lifetime additional costs for each individual born with FASD in similar countries are estimated at more than $2 million (Greenmyer, Klug, Kambeitz, Popova, & Burd, 2018).
The U.S. state of Washington is leading the way on this issue. Its Parent Child Assistance Program (PCAP) helps more than 1,400 families, supporting pregnant and parenting women with complex life histories, problematic AOD use, and ineffective engagement with services. Three years of case-manager outreach assists clients in setting and achieving healthy goals by accessing existing community services, resulting in reduced risk of AOD-exposed pregnancy and improved wellbeing (Grant & Ernst, 2018; Grant & Ernst, 2017; Grant, Ernst, Pagalilauan, & Streissguth, 2003). The PCAP program has been shown to be cost-effective in Canada (Thanh et al., 2015).
Here in WA, Women’s Health and Family Services (WHFS) asked me to partner with them to evaluate the first Australian pilot with 10 women, with amazing results. This program is literally life-changing with clients reporting improvements across nearly all areas of their lives, including feeling much more empowered and able to navigate the complexities of their lives by themselves. Further evidence is needed to inform policy and program implementation. The government could provide support to funding a full randomised control trial to provide evidence of effectiveness of PCAP in Australia. If effective, it will then need a serious spending commitment to roll out the program nationwide.
Unable to service the incredible demand, the WHFS PCAP program (Nurturing Families) has closed its waiting list. So let’s do some ‘back of the envelope’ calculations on how much we could be investing in PCAP in Australia. With 294,369 births in 2021, using a conservative 1% FASD prevalence rate, at least 245 PCAP case managers would be needed to assist only those mothers giving birth to children with FASD. Case managers work with an average of 12 clients each at a time. The typical cost of a case manager in the U.S. is $9,200 per client and around $12,800 per client in Australia, with more experienced case managers and higher wage costs. Therefore, it would cost approximately $37.6 million per year to provide 2,940 client years of service in Australia.
If the additional lifetime cost of FASD is around $2 million, preventing just 19 FASD births per year among those 2,943 years of program delivery would make the program cost-effective. With the huge potential savings to the government and society as a whole, it raises the question of why are only two case managers currently funded? And why are years of postdoctoral training and effort being wasted to write grant applications to provide further evaluation of this program in Australia without any funding being provided?
Even if initial funding is provided, there are of course challenges inherent in our three-year Federal political cycle when considering a three-year prevention program. A change in government may see the program cut, or the length of time necessary to show results (at least five years to be established and run trials) might be considered too long. Thinking further forward, if PCAP reduced FASD to low rates, it may be tempting to say ‘job done’ only to find FASD rates rising again due to prevention efforts not being sustained. The system could be improved by providing reliable sustained funding for FASD prevention programs.
Our best guess is not good enough
Let me provide another example of where systems change in prevention research could provide ongoing benefits. Imagine a researcher spends many years working with a community to help develop a FASD prevention program in an area with high prevalence. They obtain funding to evaluate the community-led prevention approach and it appears highly successful in increasing knowledge of the dangers of alcohol use and reducing alcohol use during pregnancy. Unfortunately, the amount of money provided is not enough to measure the ‘gold standard’ of preventing FASD.
Imagine the prevention activities and research evaluation to prevent 10 cases of FASD. Currently, none of the $20 million saved by not having to provide extra care for those born with FASD is likely to support further prevention, research and evaluation. Part of the difficulty is that proving you have prevented something is almost impossible scientifically. We can only estimate how many cases might have been prevented. But the main challenge is the lack of a way to reward the efforts of prevention programs. It just isn’t built into any of our systems. It is time for this to be considered by a wide range of experts and stakeholders and trialled as a novel approach to prevention research.
Despite these difficulties, adequately funding studies into the prevalence of FASD and additional costs across the lifespan for those born with FASD could make a big difference. However, we first need to know the extent of the issue by conducting a national active case-ascertainment study to provide a robust prevalence estimate. The importance of this was recognised in the National FASD Strategic Action Plan 2018-2028 (Commonwealth of Australia Department of Health, 2018) and in the findings of a Senate inquiry.
Not knowing the prevalence of FASD meant its costs could not reliably be included in the most recent report of the economic and social costs of alcohol use in Australia (Whetton et al., 2021). Knowing the prevalence of FASD, adequate funding for multi-level prevention programs can help reduce the number of children born with FASD.
The lack of funding for estimating the lifetime costs of FASD in Australia means we must rely on studies from the U.S., Canada and New Zealand. Funding here would provide the exact costs and benefits of running a program like PCAP and a much better idea of how much financial support is needed. Additionally, this would allow for budgeting appropriate NDIS funding to assist those born with the most common preventable neuro-developmental disorder as well as their families and carers. In the end, we will all benefit from providing adequate budgets and redesigning some of our systems around prevention.