Act against Europe’s most common birth defects The right advice at the right time can reduce Neural Tube Defects now
health education material and visit the gynaecologist only after they have missed one menstrual period. At this point it is already too late for folic acid supplements to have any major impact on preventing NTDs. Preconception counselling should be actively promoted in all European countries. Several countries do indeed advise folic acid supplements prior to conception and most governmental or official recommendations call for the intake of folic acid supplements by women planning a pregnancy. In the majority of countries, this guidance originates with the public body responsible for food policy and is not a priority in the public health arena. But these recommendations do not reach the women who have not either planned their pregnancy or discussed the matter with their doctor. Moreover, national guidance varies in this regard. There is an essential need to provide the right advice, to the right women, at the right time. This means that all women of childbearing age should be advised of the critical importance of adequate folate levels to prevent up to 70% of NTDs. There is already consensus in the surveyed countries and globally that adequate folate levels prior to conception prevent the majority of NTDs. There is also consensus that the appropriate level of folic acid supplements is 0.4mg for women of childbearing age, or ten times higher in the case of a prior NTDaffected pregnancy. The authors of this report believe that progress has been disappointing because advice, education and action are not linked closely enough to the at-risk groups or to current medical knowledge. It is in fact essential that all women of childbearing age improve their folate levels prior to conception, due to the risk of unplanned pregnancy and the fact that the neural tube closes within 28 days after conception. To achieve this extended reach, initiatives must now focus on promoting the preconception intake of folic acid supplements by women of childbearing age. This could be achieved in many ways: Education in health and reproductive health lessons in schools. Young European women simply do not know about the link between folic acid and NTDs before their first pregnancy and this fact does not appear to be included in the curriculum for health and sex education in schools.
Governments could send annual letters to women between 18 and 45 years of age, providing information about the need to have adequate folate levels prior to conception in order to help prevent NTDs such as Spina Bifida. Some countries report multiple abortions amongst atrisk women. Clinicians should be advised to add folate level counselling to patients in these circumstances. Gynaecologists, family planning specialists and other clinicians should be required to advise women about folate levels at every consulting opportunity. Nutritional advice remains important. A varied and balanced diet provides natural folate. However, on its own a healthy diet may not provide enough folate.
A FINAL NOTE ON DATA The starting point for any credible policy, whether at national or European level, lies in consistent and comparable data. But lack of data – comparable or not – is a major weakness in the fight against NTDs. While EUROCAT data on NTD prevalence rates etc is reliable and comparable, the data on other vital aspects of NTD incidence is neither. This is particularly clear with unplanned pregnancies. In today’s world of electronic data and digital communications, this is unacceptable. We urge the European Union and its member states to correct this situation.
CONCLUSION IN SUMMARY Our report results suggest a consensus among EU member states on the need to reduce the NTD incidence and to end the reliance on abortions, and late termination of pregnancies, linked to this largely preventable birth defect. We applaud their efforts so far. However, we conclude that the right advice is NOT reaching the right women at the right time. We therefore call for a new focus on improving folate levels in all women of childbearing age. We believe that under the auspices of the Rare Diseases Recommendation and potentially through other policies, Europe could, and should, reinvigorate its efforts to eliminate preventable NTDs by giving the right advice, to the right women, at the right time.