The Societal value of Prevention, Diagnosis and Treatments of Rare Diseases

October 9, 2014   World

Faces Archive | Source

IFSBH | Original Link

During the ICORD 2014 Annual Meeting in the Netherlands, experts convened to discuss the lack of progress in the prevention of NTDs and how to translate research evidence into effective and efficient policy decisions, balancing benefits and risks globally, resulting in policy determinations acceptable to all stakeholders.

IF Secretary General, Lieven Bauwens emphasized the urgent need for primary prevention strategies from the point of view of the organisations for Spina Bifida and Hydrocephalus. More than 23 years have passed since the results of the Medical Research Council Vitamin Study were published which established beyond doubt that the intake of folic acid supplements reduces the risk of neural tube defects (NTDs) developing in pregnancy.

Supplemental folic acid intake increases maternal folate status that contributes to the reduction of the risk of NTD. In spite of this fact, public health measures to ensure that all women of childbearing age have an adequate folate status are lacking in many countries.

Instead they rely on either voluntary folic acid fortification of food products or the promotion of folic acid supplements for women who want to get pregnant. Various studies have shown that these strategies do not reach all women of childbearing age: the prevalence of women taking folic acid supplements to reduce NTDs is still low, about 50% of all pregnancies are not planned, women of lower socioeconomic status and ethnic minority groups are less likely to eat fortified foods or use folic acid supplements. In addition, voluntary folic acid fortification can cause extreme variation in folate status within populations (with high intakes in those who use high dose vitamin supplements).

Mandatory folic acid fortification of a staple food will ensure that the majority of women of childbearing age will have an adequate folate status before becoming pregnant and will significantly reduce the number of NTD affected pregnancies. This strategy will also diminish the painful and traumatic experience of a late-term termination of pregnancy for parents-to-be, which is an often “hidden burden” in policy making. The cost of mandatory folic acid fortification is minimal, especially when compared to the costs of healthcare for those born with Spina Bifida and the immeasurable impact on their lives and on their families. Health policy makers need to review the effect of their lack of action and use the knowledge of all stakeholders to develop effective primary prevention strategies for NTDs.