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Beekmann: The emerging problem of fetal alcohol

Alcohol related harm is 100% unnecessary and avoidable harm. As such there is no justification for neglecting all possible measures to avoid it. Failing to do so, for both individuals and governments, would be unethical and simply wrong.

We hope to see that this harm would decrease. When per capita consumption rates are going down, we know that this means automatically fewer drink-driving incidents, home violence, accidents, liver diseases, cancers etc. We want these numbers to go down. But there is one, paradoxical, rate, that we want to see growing. The actual prevalence of fetal alcohol spectrum disorders (FASD).

Why do I say that?

There is not a single country that claims to have comprehensive overview of real prevalence of FASD. Many countries, also in Europe, does´nt have any data on this harm. In my own home country Estonia, the Ministry of Social Affairs publishes in its Alcohol yearbook available data on alcohol related issues and fetal alcohol syndrome is also in the list. But the figures show that we dont have an actual overview of the situation. On average there are 5-8 cases per year. At the same time, for years we have been among the leading drinking countries in the world. Which means that this small number cannot reflect the real situation. These children are out there, but we dont know it. We have´nt recognized them.

Again, even leading countries, like Canada, say that their official data underestimates the problem. “According to Health Canada, 300,000 people are living with FASD. Researchers say that number is an underestimate because of widespread ignorance about the condition among physicians, who misdiagnose the disorder, and biological mothers who fear the stigma that might result from admitting they drank alcohol during their pregnancies.”

While ability to diagnose and identify these children is lagging, science has been extremely active in getting a better picture how alcohol exposure affects the unborn child and how many children could actually be influenced by it. Based on community studies using physical examinations, experts estimate that the full range of FASDs in the United States and some Western European countries might number as high as 2 to 5 per 100 school children (or 2% to 5% of the population).

Up to 5%? According to CDC, studies in Asia, Europe, and North America have identified individuals with autism spectrum disorder with an average prevalence of between 1% and 2%. And yet we know and hear so much more about autism than FASD. 5% in Finland would mean 272000 people…

According to a 2016 study published in The South African Medical Journal FASD prevalence rates in South Africa ranged from 29 to 290 per 1 000 live births. That means up to 29%!

What seems to be clear from these estimates is that we are not even close to understanding the scope of this problem.

Besides better understanding of the prevalence scientists are raising our awareness on the problems this condition brings with it. This January a massive study was published that identified 428 distinct disease conditions that co-occur in people with FASD. These disease conditions, coded in the International Classification of Disease (ICD-10), affected nearly every system of the body, including the central nervous system (brain), vision, hearing, cardiac, circulation, digestion, and musculoskeletal and respiratory systems, among others.

Progress

Different countries are taking steps to prevent and deal with this problem. In March this year, Ontario, Canada´s province, adopted its first strategy to combat FASD, showing also what a local government can do about it. In February Centers for Disease Control and Prevention (USA) published a ground-braking report stating that an estimated 3.3 million women between the ages of 15 and 44 years are at risk of exposing their developing baby to alcohol because they are drinking. The report urged all sexually active women who stop using birth control to stop drinking alcohol. In January this year UK issued its new guidelines for alcohol consumption. Among other points guidelines for pregnant women were also updated to clarify that no level of alcohol is safe to drink in pregnancy. The previous advice for pregnant women to limit themselves to no more than 1 to 2 units of alcohol once or twice per week has been removed to provide greater clarity as a precaution.

Closer to us, in November 2015 a regional resource center focusing on services for children and adolescents aged 2–18 years with prenatal exposure to alcohol or other drugs was opened in South-Eastern Health Region of Norway. The resource centre is the first of its kind in Scandinavia. As another important step in Nordics, Sweden calculated its annual cost on FASD. “The annual total societal cost of FAS was estimated at €76,000 per child (0–17 years) and €110,000 per adult (18–74 years), corresponding to €1.6 billion per year in the Swedish population using a prevalence of FAS of 0.2 %.” And again, scientists added that “The cost burden of FAS on the society is extensive, but likely to be underestimated.”

Without a correct diagnosis these children might be gravely misunderstood in our societies. Their problematic behaviour could be interpreted as acts of disobedience that requires disciplining and that is exactly what we see. Based on available Canadian data, youths with FASD are 19 times more likely to be incarcerated than youths without FASD in a given year. But these children are not a problem, they have a problem. Problem that was caused before their birth.

A proper diagnosis would put these children to a right path where they could be helped as much as possible. A proper diagnosis and data that reflects the true situation, would be a strong basis for effective prevention of FASD as only then will the society understand how important and serious this is.

This is 100% preventable problem.

Lauri Beekmann

Secretary General for the Nordic Alcohol and Drug Policy Network (NordAN)

This article was first published in Finnish Alko, Finland’s alcohol retail monopoly, website “In the company of children

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