2011 Report on Neural Tube Defect Prevention
‘Birth defect prevention still neglected:
over 4,500 pregnancies a year still affected by Neural Tube Defects in Europe’
Brussels, 29 June 2011 – The report ‘Act against Europe’s most common birth defects: one year on – Defining Neural Tube Defect prevention strategies in Europe’ launched today under the auspices of the Hungarian Presidency of the EU, calls, once again, for better prevention strategies and an effective maternal health policy. These are key in reducing the incidence of Neural Tube Defects (NTDs), Europe’s most common and preventable birth defects, by ensuring women of childbearing age receive the right advice at the right time on the importance of raising their folate levels prior to conception.
T
his second edition takes a horizontal look at the policies that could contribute to increasing NTD prevention in Europe and serves as a tool supporting policy-makers’ public health decisions.
The President of the International Federation for Spina Bifida and Hydrocephalus (IF), the association representing people living with NTDs such as Spina Bifida, Pierre Mertens, explained why the report is so important: “Despite national and international health authorities’ acknowledgement that raising women’s folate levels contributes to an effective reduction of NTD affected pregnancies, one year following the publication of the first report on NTDs, the 2011 update sadly concludes that little has happened in the last 20 years to ensure effective NTD prevention! So this is our appeal to policy makers: have a look at our suggestions, implement them and explore new methods to raise women’s folate levels. Prevention will get us all a long way!”
It is estimated that up to 70% of NTDs can be avoided through adequate folate levels in women of childbearing age before conception [1]. Despite existing recommendations to improve women’s folate levels, data shows that, in Europe, there are more than 4,500 NTD affected pregnancies every year [2], of which an estimated 72% are terminated following a prenatal diagnosis [3].
These figures can be partly explained by the fact that health campaigns often dismiss that in Europe up to 50% of pregnancies are unplanned [4] and that women are therefore not pro-actively seeking prenatal advice. This also means that women are left unaware of the importance of raising their folate levels before conception through an adequate implementation of the WHO recommendations of daily folate intake, i.e. 0.4mg of folic acid at least two months prior to conception and 12 weeks into their pregnancy [5].
To date, folate levels in women of childbearing age can be raised via three methods: natural folate intake through a folate rich diet (e.g. green leafy vegetables, berries, beans, spinach, broccoli, tomatoes, etc), folic acid supplements to increase folate levels and food fortification with folic acid.
NTDs, such as Spina Bifida, are birth defects which occur when the neural tube fails to close within the first 28 days of pregnancy and which result in severe malformations. Surviving infants will often have lifelong disabilities but, given the right circumstances, can live fulfilling, independent lives equal to others.
Disclaimer
This report is not intended for distribution in the UK.
*Note to the Editor
About the report partners
The International Federation for Spina Bifida and Hydrocephalus (IF) is the world-wide umbrella organisation (INGO) for Spina Bifida and Hydrocephalus organisations. Created in 1979, IF’s membership consists today of 41 regional and national umbrella organisations for Spina Bifida and Hydrocephalus.
For more information about IF, visit www.ifglobal.org
Bayer HealthCare Pharmaceuticals is a worldwide leading specialty pharmaceutical company. Its research and business activities are focused on the following areas: Diagnostic Imaging, General Medicine, Specialty Medicine and Women’s Healthcare. Using new ideas, Bayer HealthCare aims to make a contribution to medical progress and strives to improve the quality of life.
For more information about Bayer HealthCare Pharmaceuticals, visit www.bayerpharma.com
MediClara is an independent company, based in The Netherlands, which contributes to the improvement of healthcare by accompanying healthcare professionals on specific tasks. MediClara developed and implemented a Folic Acid education programme for community pharmacies in The Netherlands to prevent NTDs. MediClara’s clients include individual care givers, academic research centres, vocational training centres for GP’s, pharmaceutical companies, the Dutch health authorities, and national organisations of healthcare providers.
For more information about MediClara, visit www.mediclara.nl
The European Association of Service Providers for Persons with Disabilities (EASPD) is a non-profit NGO in the disability sector promoting the equalisation of opportunities for people with disabilities through effective and high quality service systems.
For more information about EASPD, visit www.easpd.eu
The European Foundation for the Care of Newborn Infants (EFCNI) is the first pan-European organisation to represent the interests of newborn and preterm infants and their families.It gathers together parents and medical professionals from different disciplines with the common goal of improving long-term health of newborn and preterm children by ensuring the best possible prevention, treatment, care and support.
For more information about EFCNI, visit www.efcni.org
The European Organisation for Rare Diseases (EURORDIS) is a non-governmental patient organisation active in the field of rare diseases, founded in 1997 and dedicated to improve the quality of life of all people living with rare diseases in Europe. EURORDIS has 469 members in 45 countries.
For more information about EURORDIS, visit www.eurordis.org
For any questions please contact:
Caroline Vrancken
Burson-Marsteller Brussels
Consultant to Bayer HealthCare Pharmaceuticals
Tel: +32.2.743.66.45
Mobile: +32.478.84.24.38
Email: caroline.vrancken@bm.com
