The FAA Report

FAA Executive summary

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Contents:

Foreword

Acknowledgements

Introduction

Overview

Issues

Call to action

Appendices:

Biographies

IPSOS survey

References

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The FAA Report

FAA Executive summary

Foreword

It is estimated that up to three pregnancies in every thousand in the UK are affected with neural tube defects (NTDs), such as spina bifida and anencephaly. NTDs are among the most frequently occurring human congenital malformations throughout the world. As a result of prenatal diagnosis of NTDs, many pregnancies are electively terminated, often a highly distressing decision for the parents. Ninety per cent of babies born with NTDs are born into families with no history of the condition. The physical, emotional and financial cost of NTDs is therefore huge, and in my role as Chief Executive Officer of the Association of Spina Bifida and Hydrocephalus (ASBAH) I see the trauma and stress of families on a daily basis.

Fundamental to reducing the risk of NTDs is education amongst all women of child-bearing age on the benefits and uptake of the vitamin folic acid before and during pregnancy. All clinical studies of women taking this essential nutrient from 1981- 2003 have reported a 50-85 per cent decrease in the risk of NTDs. Although folic acid can be derived from a diet rich in fruit and vegetables, obtaining the recommended daily allowance from a healthy diet alone is extremely difficult (approximately 150 - 200µg) - less than a third of the 600µg needed for women planning pregnancy.^1,2 It is essential therefore that all women who are ovulating and sexually active should be supplementing their diet with folic acid to prevent NTDs.

Whilst overall awareness about folic acid and pregnancy is quite good, research has shown that many women are still not aware of the critical window for taking folic acid, i.e. three months before conception and during the first 12 weeks when the neural tube is developing into the brain and spinal cord. To compound this as many as 50 per cent of all pregnancies are unplanned and women do not realise they are pregnant until after the first month. Much needs to be done to ensure that consistent hard-hitting messages are reaching all women during their reproductive years so that they change their behaviour to take folic acid before pregnancy, as well as during.

To help encourage support in addressing the issues of sub-optimal uptake and usage of folic acid in women most at-risk, Larkhall Laboratories sponsored an expert panel of healthcare professionals and patient organisations to develop a consensus on the way forward. It was with the greatest of pleasure that I took part in this the inaugural meeting of Folic Acid Action, a group which will act as a campaigning voice to help drive reform.

We hope that this will be the start of a process to ensure women of child-bearing age are aware and proactive in taking folic acid that will lead directly to fewer terminations and better health outcomes for future babies. This is a challenge for us all, but it is also a rare opportunity to empower women to have healthy pregnancies and reduce severe disabilities.

Andrew Russell

Chief Executive Officer, Association for Spina Bifida & Hydrocephalus (ASBAH)

ASBAH is a national charity, supported entirely by voluntary contributions, working in partnership with 40 independent Local Associations to help people with spina bifida and/or hydrocephalus, their families and carers to provide information and advice, and promote individual choice, and quality of life. ASBAH supports medical research into the prevention and treatment of spina bifida and hydrocephalus.