A turning point in the history of SBH prevention: the launch of the IF Global Prevention Initiative

28 October 2016 // Today marks the launch of an exciting new worldwide initiative from the International Federation for Spina Bifida and Hydrocephalus (IF), the first of its kind to tackle the primary prevention of Neural Tube Defects (NTDs) and Hydrocephalus as a united global community.

NTDs affect around 500,000 live births every year. Spina bifida, the most common NTD, is the most severe birth defect compatible with life, and anencephaly is almost always fatal. Yet the majority of these birth defects is easy to prevent!

In 1991, a landmark study by the Medical Research Council discovered that folic acid (vitamin B9) could reduce the risk of NTDs significantly, by up to 72%. However 25 years on, we are still only managing to prevent around 15% of the cases that we could!

IF's Programme Manager Global Prevention, Martine Austin said,

"Primary prevention is one of IF’s key objectives. We know what the potential is, and it’s clear that it’s not being met, so we felt an increasing obligation to do what we could to help maximise primary prevention on a global level. With the GPI we aim to bring together associated organisations, Governments, individuals, and NGO’s all over the world in a single united voice, sharing knowledge, experience, expertise and resources to achieve this common goal."

Since the MRC study, it has been recommended that all women who could get pregnant should take a daily supplement containing folic acid (usually 400mcg) from at least one month before conception until the 12th week of pregnancy, to reduce the risk of their pregnancy being affected. Yet universally, the uptake of supplements is often very low during the critical period before conception. The massive percentage of unplanned pregnancies around the world subsequently presents a huge obstacle to prevention.

To help overcome this, over 80 countries around the world now have a mandate to fortify staple grains, such as wheat, rice, maize or corn masa with folic acid, increasing folic acid intake at population level, protecting many more pregnancies. Where mandatory fortification has been introduced, there has been an average reduction in NTD cases of 40-50%. The World Health Organization (WHO) supports both supplementation and fortification, as key strategies in maximizing the global risk reduction of NTDs.

Furthering its outstanding contribution and commitment to NTD prevention (in the UK and India), and to preconception health internationally, Vitabiotics Pregnacare has been announced as the principal global partner of the initiative. Senior Vice President of Vitabiotics in London, Robert Taylor commented,

"Pregnacare is delighted to support IF as the worldwide partner of its Global Prevention Initiative. As pioneers of nutrition in pregnancy, Pregnacare vitamins has a passionate and long standing commitment to NTD prevention and preconception health and nutrition. Working in partnership with IF we hope to further increase the awareness and supplemental intake of folic acid, and key nutrients such as vitamin B12, before conception and during pregnancy, for women worldwide".

Not satisfied with tackling one global public health issue, IF’s new initiative, also aims to address the prevention of the often associated condition of hydrocephalus. There are around 500,000 new cases of infant hydrocephalus every year, but the majority of these cases occur independently from spina bifida, as a result of prematurity and infection. The risk of hydrocephalus increases dramatically in the presence of poverty and lack of proper healthcare. Subsequently, by far the greatest incidence of hydrocephalus is seen in the developing world, where there is limited or no access to critical life saving care. Many of these babies will die.

"Whilst much more research is needed to gain a better understanding of the causes, before we can fully maximise risk reduction, by reducing some of the known risk factors associated with infection and premature birth, the GPI hopes to make a start."

You can add your support the Global Prevention Initiative here https://goo.gl/na2eS0

More information
Global Prevention Initiative: http://www.ifglobal.org/en/what-we-do/global-prevention

About IF
The International Federation for Spina Bifida and Hydrocephalus was founded by people with Spina Bifida and Hydrocephalus (SBH) and their families in 1979. Over the years, it has grown from a voluntary association into a professional disabled people’s organisation (DPO) with global coverage, democratic structure and transparent and accountable processes. IF’s fastgrowing membership now includes 57 member organisations in Africa, Australia, the Americas, Asia and Europe. Membership of IF is open to all nationally registered organisations that share IF’s vision and mission and actively involve people with SBH in their work.

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Aneta Sidorko

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