Reducing inequities in preventable neural tube defects: the critical and underutilized role of neurosurgical advocacy for folate fortification

Abstract

Neural tube defects (NTDs) are one of the greatest causes of childhood mortality and disability-adjusted life years worldwide. Global prevalence at birth is approximately 18.6 per 10,000 live births, with more than 300,000 infants with NTDs born every year. Substantial strides have been made in understanding the genetics, pathophysiology, and surgical treatment of NTDs, yet the natural history remains one of high morbidity and profound impairment of quality of life. Direct and indirect costs of care are enormous, which ensures profound inequities and disparities in the burden of disease in countries of low and moderate resources. All indices of disease burden are higher for NTDs in developing countries. The great tragedy is that the majority of NTDs can be prevented with folate fortification of commercially produced food. Unequivocal evidence of the effectiveness of folate to reduce the incidence of NTDs has existed for more than 25 years. Yet, the most comprehensive surveys of effectiveness of implementation strategies show that more than 100 countries fail to fortify, and consequently only 13% of folate-preventable spina bifida is actually prevented. Neurosurgeons harbor a disproportionate, central, and fundamental role in the management of NTDs and enjoy high standing in society. No organized group in medicine can speak as authoritatively or convincingly. As a result, neurosurgeons and organized neurosurgery harbor disproportionate potential to advocate for more comprehensive folate fortification, and thereby prevent the most common and severe birth defect to impact the human nervous system. Assertive, proactive, informed advocacy for folate fortification should be a central and integral part of the neurosurgical approach to NTDs. Only by making the prevention of dysraphism a priority can we best address the inequities often observed worldwide.

Keywords: FAP-SB = folic acid preventable SB; LMICs = low- and middle-income countries; MMC = myelomeningocele; NTD = neural tube defect; RBC = red blood cell; SB = spina bifida; anencephaly; congenital malformations; infant mortality; mandatory folic acid fortification; myelomeningocele; neural tube defect; pediatric neurosurgery; spina bifida.

Conflict of interest statement

Disclosures

The authors report no conflict of interest concerning the materials or methods used in this study or the findings specified in this paper.

Figures

FIG. 1.

Maize flour folic acid supplementation. The map displays (in green) countries that have legal documentation to either standardize (“voluntary fortification”) or mandate (“mandatory fortification”) food fortification with maize flour folic acid, or countries that have written standards for folic acid (“fortification standards”). Source: Global Fortification Data Exchange (https://fortificationdata.org/#data).

FIG. 2.

Wheat flour folic acid supplementation. The map displays (in green) countries that have legal documentation to either standardize (“voluntary fortification”) or mandate (“mandatory fortification”) food fortification with wheat flour folic acid, or countries that have written standards for folic acid (“fortification standards”). Source: Global Fortification Data Exchange (https://fortificationdata.org/#data).

FIG. 3.

Sample Global Push report card. The report cards, developed by the PUSH! Global Alliance To Improve Nutrition and the Center for Spina Bifida Prevention/Emory University, provide country and regional snapshots of indicators for SB and hydrocephalus surveillance, prevention, and care. Reproduced with permission from the PUSH! Global Health Alliance (http://pu-sh.org/global-report-cards). For more details on the PUSH! methodology, indicators, scoring criteria, and full recommendations, visit www.pu-sh.org.