PROGRESSING THE FASD CHALLENGE

FASD Policy and Research Forum, 9 September, 2016, as a part of the observance of International FASD Awareness Day.

In 1920, the Maoriland Worker, said that ‘the politician is like the person who would build an ambulance at the bottom of the cliff, instead of constructing a good fence at the top.’ In many ways our ambulances are panic measures. We ignore what is happening at the top of the cliff, but when we see the human misery tumbling from above we think we should do something – although even then we can be reluctant to take action below.

Thus it has been with FASD, Fetal Alcohol Spectrum Disorders, the consequences of a mother drinking while she is pregnant. The permanent cognitive and behavioural damage to the child impacts on their wellbeing and social functioning, on the wellbeing of their families and on society as a whole in terms of higher health care and judicial costs, less effective education and lower tax receipts.

Extraordinarily, we have known about this problem for along time. I first came across it about two decades ago in a paper by an American colleague, economist Ric Harwood. Admittedly the paper was only on the most extreme condition on the FASD spectrum (sometimes called Fetal Alcohol Syndrome). It showed the costs of the condition to the US state were horrendous; around $1 million per person. That did not cover the other costs to society, nor the suffering to those who have the condition. Teina Pora, who as at the more extreme end of the spectrum is a terrible example. He was unable to understand the nature of a confession; because we were insensitive to his FASD, he spent 21 years in jail.

We think that each year about 60 children are born with the most extreme form of FASD. That means that since I learned about this extreme condition we have had 1200 born with it. Subsequently, I learned there are probably ten times as many with the wider condition of a FASD, which includes those without the physical signs and facial features of FAS. That means in the twenty years we have had 12,000 who have fallen off the top of the cliff. They are scattered through New Zealand but were they to come together they would fill a town the size of Te Awamutu, Hawera or Gore – all three towns if you add their immediate family.

You would not expect economists to be on the research frontier of medical conditions; physicians had identified The FASD condition earlier. What is extraordinary, though, is that it has taken two decades since I learned of it for the government to articulate a policy position and it will take even more time to implement it.

Building the fence at the top of the cliff is not difficult. It simply requires women who are pregnant not to drink, to immediately stop drinking if they have been drinking and where they find themselves unable to stop, to cut back as much as they can. Because it may take some time to learn she is pregnant, women who could get pregnant – those not using contraceptive – should not drink either.

It would be very easy to stop at this point heaping blame on mothers. But there is evidence that some health professionals are not always alert to FASD. They need to build in the advice to stop drinking as a routine part of their support. They need to reinforce their message by pointing out that humans evolved before they imbibed alcohol, that the placenta is not designed to filter out alcohol, and that a drinking pregnant woman has a drinking child inside her.

But the whole village brings up a child. It is not a matter of men and older women washing our hands of the problem. We know that the fight against alcohol misuse requires a broad community involvement. We all need to be aware of the dangers and to be supportive to those in danger. Not in a hectoring way, but appreciating the challenge for the women at risk. Personally I won’t drink alcohol in the presence of a pregnant woman. I’m not a wowser; I enjoy a pinot with a meal. But solidarity and commitment come first.

Nor should we deny there is a problem. A year ago an Auckland waitress was criticised for refusing to serve alcohol to a pregnant woman, despite having the spirit of the law on her side. It says not to serve minors – you cannot be much more a minor than before you are born; alcohol drunk by a pregnant woman goes straight into the bloodstream of the fetus. It was extraordinary the waitress was criticised. In a more informed, caring society she would have been applauded. Let’s look forward to developing such a society.

But even if we are more successful at building fences at the top of the cliff, we must not forget those, and their families, who have already fallen over. The person with FASD suffered collaterally from the decisions of other people when he or she was a fetus and had absolutely no control over the damage that befell them. I leave others to decide whether there is a case for accident compensation (or even criminal compensation since the law against feeding liquor to minors has been broken). Whatever, in the social policy framework that the Maoriland Worker was presaging and which the Woodhouse Commission, which founded our accident compensation system, set out; we accept that society has a duty to address such victims instead of ignoring them.

I remind you, though, that Woodhouse Commission said that the first priority should be prevention, the second should be rehabilitation and only when we have failed in these two should there be compensation. I mention this because if public policy were to focus only on compensating those who suffer from FASD, it would make very slow progress. Better to go with the Woodhouse Commission and give priority to prevention and, when that has failed, to rehabilitating those with FASD as best we can.

At this point an economist gets nervous about the costs of an effective program dealing with FASD. I begin by pointing out that compared to the pattern in the 2000s, we seem to be underspending on the public health system by a whopping $1.7 billion a year. There is no point of advocating more spending on this health program or that one, without stating very firmly that we should be spending more on health care and prevention generally. That means, of course, higher taxation; if we are not willing to accept the higher taxes that the additional spending requires, then we cannot have that spending.

But an economist has to go through another hoop. Even if there were the additional funds available for more healthcare and prevention programs, should they go on FASD prevention and rehabilitation?

Some work on the costs of FASD to society, which some North American colleagues and I did, just published in the New Zealand Medical Journal, suggests ‘yes, certainly’. Unfortunately we do not have all the key parameters to make a comprehensive estimate. (What is required are attributable fractions – such as the likelihood that a person with FASD needs additional health care – which are not available for New Zealand.) But we could estimate the productivity loss to the economy from FASD – how much bigger would that economic production if there was no FASD.

Our estimate ranged from $49m to $200m in the 2013 year. Let us use the lower one, and yet not forget that it is a very conservative figure because it does not include the costs to the education, health or justice systems nor to families carrying the burden of FASD dependants. (For an illustration as to how much someone with FASD can cost, consider Teina Pora. As well as the costs of his not contributing to the labour force plus the compensation he got for wrongful incarceration, there is the costs of policing, justice and 21 years in jail together with education and health costs.

Even ignoring these other social costs, the study says we could spend $49 million a year on prevention and in the long run break even on the productivity gains alone. Now no one is suggesting we need to spend $49 million a year on a prevention program. Indeed in my view, once our society has got our head around the FASD issue, prevention would be eventually near costless; just a part of the health routines we do automatically and barely notice. Initially though, we need to put a real effort into building into our lives those automatic routines – recognising that there is a problem and we (society as a whole) can deal with it. However such a startup program is certainly not going to cost $49 million a year even if the productivity gains alone could justify such an outlay.

What about rehabilitation? A report by New Zealander Dr Tanya Skaler suggests that rehabilitation can be effective. We don’t know whether it can be cost effective. Ambulances are much more expensive than fences. Probably it is cost effective, but it may not be quite there. That is the reason why I drew attention to our compensation system. If something happens to a person which we have not prevented, we rehabilitate them with a treatment program which is quite generous relative to others, such as those whose needs arise from sickness. My argument is that we should rehabilitate those suffering FASD on the basis that we rehabilitate those suffering from accident and criminal injuries.

I guess we can say with last August’s Government working party report we are on the way to a coherent policy towards FASD compared to 20 years ago. But we have a long way to go. May I suggest a goal of one day not having an FASD day on 9 September, because the condition is no longer the curse it is today.