Professor Michael Turner:

Chairman, members of the committee I thank you for the invitation to discuss the pregnancy complication of neural tube defects which is a major public health issue of national importance.

Neural tube defects, NTDs, are a group of serious congenital neurodevelopmental malformations due to the incomplete closure of the neural tube within a month of conception. They are important because they are a serious and preventable cause of congenital malformations. About one in 1,000 pregnancies is complicated by neural tube defect. To put that in context, 80 families every year are touched by the crisis of having a pregnancy with a neural tube defect.

This group of congenital abnormalities includes anencephaly which, as the members may be aware, is incompatible with life. Death before birth is common and survival beyond the first week of life rare. Spina bifida and encephalocoele both have a high peri-natal and infant mortality.

In Ireland, about 80% of infants with spina bifida survive, although the condition is associated with varying degrees of disability. The number of babies live-born with spina bifida in Ireland is higher than in any country with the exception of Malta. That is, in part, because of our legislation on termination of pregnancy. In my view, this means we have a greater responsibility to prevent neural tube defects than many other EU countries do.

NTDs carry a heavy, life-long burden of illness for the individual, parents and families and, incidentally, there is a heavy financial burden for the health services.

Some neural tube defects are genetic in origin but two landmark studies from the 1990s indicate that approximately two thirds are preventable by increasing the mother's consumption of folic acid before and during the early days of pregnancy. There are three possible sources of folate. The first is food, and I have listed in my submission the various foodstuffs. I will not go through them in detail. The bio-availability of folate from food is limited and it is strongly influenced by methods of preparation. For example, boiling degrades the natural form of vitamin but steaming does not. During pregnancy, the demands for folate increase as it is important for the development of the baby. Even if a woman is on a healthy diet and where food is prepared appropriately, it is very difficult for any woman to achieve the necessary amounts of folate through dietary means alone.

The second source of folate is folic acid supplements. Based on scientific evidence over the past 24 years, it is recommended that the optimum dose of supplemental folic acid for the prevention of neural tube defects is 400 micrograms orally per day, which is readily available from pharmacists over the counter. However, with individual women where there is increased risk of neural tube defects, a higher dose of 5 mg orally per day should be taken, and this requires a prescription before it is dispensed. In particular, this applies to women with a history of neural tube defects, women who are obese or with type 2 diabetes mellitus or women on particular medication, such as certain anti-epileptic drugs.

The third source of folate is food fortification, which may be mandatory or voluntary. In North America, food fortification with folic acid is mandatory and this has been associated with a decrease in the incidence of neural tube defects in the United States, Canada and other countries such as South Africa and Chile. In Ireland and the rest of the European Union - with the exception of Sweden - food fortification with folic acid is voluntary. There was a recommendation that went to the Government in 2006 about mandatory food fortification but following a report from the Food Safety Authority in 2008, the Government decided not to mandate fortification.

I will now move to some recent research published in Ireland that is relevant to much of the discussion. Ireland had a high incidence of neural tube defects compared with the rest of Europe and the rate had been falling. However, a recent comprehensive national study was undertaken by my colleagues in the HSE EUROCAT, and I acknowledge the work of Dr. Bob McDonnell and Dr. Virginia Delany in carrying out this detailed national study. It indicates that the incidence of neural tube defects in Ireland had increased significantly from the previous audit in 2005 and 2006; this increase was from 0.92 per thousand births to 1.17 per thousand births in 2009 to 2011. Of the 236 cases over three years, approximately half were due to spina bifida and another half were due to anencephaly. Importantly, of the 94 babies born with spina bifida, 90% survived the neonatal period and the overwhelming majority ended up having spinal surgery in the national centre in Temple Street. Interestingly, the incidence of neural tube defects was higher outside Dublin, and that was significant. The increase in the incidence may be explained by better case ascertainment in the recent study but we believe that is not the case and the incidence has now stopped falling.

With regard to food fortification, an important study was carried out by Dr. Mary Rose Sweeney and her team in Dublin City University, where they audited fortified foods available in supermarkets in the Republic of Ireland. They visited six of the top supermarkets by market share in Dublin and compared folic acid levels with nutrition levels from two previous studies in 2004 and 2008. They found that the voluntary fortification of food has been reduced in Ireland and this decision has been taken by food manufacturers.

A third piece of research was carried out by my colleague, Dr. McKeating, who studied women booking antenatal care in the Coombe. She found that the number of women taking periconceptual folic acid had fallen from 45% in 2009 to 43% in 2013. This fall is statistically significant and at a time one would hope the number of women taking periconceptual folic acid would increase, it is coming down. This decrease was more likely to occur in women who had children before, who were older, who were obese and who were born in Ireland. Some women in our society are more vulnerable than others when it comes to not taking periconceptual folic acid.

A recent study published from the UCD centre of a large series of women in the Coombe indicates that only one in four women takes folic acid for more than 12 weeks before pregnancy, as is recommended. Looking at it another way, three of four women booking antenatal care have inadequate folic acid supplementation at the start of pregnancy. Women who planned their pregnancy or who were having their first baby were more likely to take folic acid. We have just reviewed all the guidelines on folic acid in the European Union that are produced by national bodies. There is inconsistency across national and international guidance about folic acid supplementation, and this must be confusing for the general population and women of child-bearing age in particular.

Based on our research to date, we have recently received a large grant from safefood, an all-island body, and we are planning to look at what exactly are the red cell folate levels in women at the start of pregnancy in Dublin, Cork and Belfast. The Food Safety Authority of Ireland is currently reviewing the issue of food fortification and there is a report due to go to the Minister, so I do not wish to pre-empt that report.

Where does this leave us? We need to update and revise the national guidance that we give to women of childbearing age. In the past we have often told women that if they plan to become pregnant, they should take folic acid. The problem is that a third of pregnancies in the country are unplanned and those figures are similar to other countries. With the two thirds of pregnancies that are planned, in half of those the women conceives within three months of planning the pregnancy, and therefore there is not enough folic acid on board by the time she conceives. We also need to get across a message to women who are at increased risk that they need to take high doses of folic acid, with a prescription required from a doctor.

It is a long time since there was a public health campaign on the subject of periconceptual folic acid. We need to relaunch such a scheme and prioritise those women who are particularly vulnerable. As part of any public health campaign, health care professionals nationally and internationally need to be consistent in their communication and highlight the importance of pre-pregnancy supplementation in addition to that in early pregnancy.

Health care professionals nationally and internationally need to be consistent in their communications and to highlight the importance of pre-pregnancy supplementation as well as that in early pregnancy.

We find from recent studies carried out in the Coombe that women of childbearing age use smart phones extensively to access pregnancy-related information. We suggest that future campaigns should use social media as well as traditional communication tools.

The issue of mandatory food fortification with FA needs to be reviewed urgently by the Government and this has implications not only for the Department of Health but also for the Department of Agriculture, Food and the Marine. As food and food ingredients are now sourced globally this issue would benefit, in my view, from a pan-European approach to the regulation and subsequent monitoring of all food fortification. In the meantime, I recommend that there is an improvement in communications about voluntary FA fortification between the food industry and women and health care professionals. The food manufacturers reduced the amount of fortification in food but they failed to communicate that message to women of childbearing age and failed to communicate it to health care professionals. This reduction in voluntary FA fortification and in supplementation may explain in part why we have seen an increase in the incidence of neural-tube defects nationally in recent years. Thank you.