About the Center for Spina Bifida Prevention (CSBP)

Our Mission

Preventing every possible folic acid-preventable spina bifida and anencephaly around the world  – by compelling decision makers world-wide to mandate fortification of processed foods.  Since the United States mandated fortification, over 60 other countries have done so, but that leaves over 100 that do not, including India, China, almost all of Europe and parts of Africa.

Our History and Leadership

The Center for Spina Bifida Prevention was founded in 2012 at Emory University, Rollins School of Public Health. The Center is directed by Dr. Godfrey P. Oakley, Jr., MD, MSPM, former Director of the Division of Birth Defects at the Centers for Disease Control and Prevention (CDC).

Dr. Oakley is the world’s leading expert in the prevention of spina bifida and anencephaly.

Vijaya Kancherla, PhD, is an Associate Professor in the Department of Epidemiology at Emory University Rollins School of Public Health. Dr. Kancherla serves as the Deputy Director of the Center for Spina Bifida Prevention.

She is trained in birth defects epidemiology.

 

What does the Center bring?

We bring a unique approach focused on prevention.  Although other sites and organizations offer support and education, the Center for Spina Bifida Prevention directs its attention to capturing the political will to mandate fortification of foods with folic acid, a B-vitamin that has been proven to prevent spina bifida and anencephaly.

We have already been successful in preventing spina bifida with this approach!  When it was shown in 1991 that folic acid would prevent spina bifida, Dr. Oakley worked with medical professionals and parents represented by March of Dimes to get the FDA to require folic acid to be added to enriched grains in the United States.  This mandate was passed in 1996 for implementation in 1998.  The U.S. has fortified grains since 1998 and the prevalence of neural tube defects, including spina bifida and anencephaly, has been reduced from 10 per 10,000 births to about 5 per 10,000 births, a reduction by 50%.

Just as smallpox was eradicated by a vaccine, we see folic acid as the “vaccine” to prevent spina bifida.  It is a means to an end.

Training

The Center also serves as a training hub for many students enrolled at Emory University, assisting us in research, prevention, and policy issues.  Several students have taken up positions at the Centers for Disease Control and Prevention birth defects branch, and advanced educational pursuits on birth defects prevention, after graduation based on the experience they were able to gain at the Center.

Partners

We have on-going collaboration with many other active organizations that complement each other in spina bifida research and prevention.  Our key partner, Food Fortification Initiative (FFI), has championed folic acid fortification of staple foods and supplies training for millers in various countries.

We also have worked with the March of Dimes, the International Federation for Spina Bifida and Hydrocephaly, the Task Force for Global Health, ReachAnother Foundation, and other partners on various issues related to global spina bifida prevention.  Our Center takes pride in sharing its goal with many other key players in preventing spina bifida and anencephaly worldwide, and this association is both a strength and a resource that guides us in achieving our vision for improving lives of children and families worldwide.

Spina Bifida and Anencephaly

Spina bifida and anencephaly are serious birth defects that occur when a baby’s spinal cord or brain does not develop properly during early pregnancy.  These are called neural tube defects.  Anencephaly babies do not survive, while babies born with spina bifida face a high probability of death in early childhood, require ongoing medical and surgical care, and are often confined to life in a wheelchair.

These birth defects place significant emotional and financial burden on families, affecting children from all economic and ethnic groups.

The brain and spinal cord are formed during the first 28 days of pregnancy, often before a woman knows she is pregnant.  Thus, to prevent these birth defects, an intervention must occur before conception and continue through early pregnancy.

Globally, it is estimated that 300,000 births are affected by these neural tube defects each year.  Of those births, 240,000 would be due to folic acid deficiency.  Current prevention efforts are able to prevent about 35,000 cases, leaving close to 200,000 affected births that could be prevented each year.  This number represents 20 times the total number of babies harmed by thalidomide 60 years ago, yet thalidomide (a drug initially prescribed to prevent nausea in early pregnancy) was quickly removed from use.

The solution to prevent folic acid-preventable spina bifida and anencephaly has been known for 25 years – provide sufficient folic acid to women of child-bearing age.  Yet to date there has not been a well-planned, funded, and coordinated global program to eliminate these birth defects, as there has been for other conditions, such as polio.  The high count and severity, in the face of an achievable solution, is why the Center for Spina Bifida Prevention at Emory University is focusing on the problem.

Spina Bifida is a Preventable Birth Defect

The prevention of Spina Bifida is Simple, Affordable and Proven.

The predominant cause of spina bifida and anencephaly is a lack of adequate folic acid (vitamin B9) in the mother’s diet prior to conception and during the first month of pregnancy.  As early as 18 days after fertilization, the spinal cord begins to develop.

Food fortification has been shown reliably to be the safest and most effective way to prevent spina bifida.

By fortifying food with folic acid, we can reach almost all women of child-bearing age and prevent nearly all folic acid-preventable spina bifida and anencephaly.  With only about 60 countries currently mandating food fortification, there is huge potential to prevent these types of birth defects in 100 or more remaining countries.

Simple

Since 1998, the mandatory fortification program implemented in the U.S. provides about 1/3 of the Recommended Daily Allowance of folic acid – a perfectly safe level.  The vitamin is simply added to the grains as they are processed.  In addition to preventing spina bifida, folic acid fortification has also eliminated folate deficiency anemia and may have resulted in important reductions of first strokes.

Affordable

Adding folic acid to refined grains in the U.S. is affordable and cost effective.  The cost in the U.S. is about 1 cent per person per year and is estimated to save $150 in care for every dollar spent.

Proven

A double-blind randomized clinical trial by the British Medical Research Council in 1991 proved scientifically that sufficient folic acid prevents spina bifida and anencephaly.  Since many women do not get enough folic acid in their diet, the Center for Spina Bifida Prevention recommends food fortification.  Adding folic acid to centrally processed foods has been shown to be highly effective in preventing spina bifida in the United States, Canada and approximately 60 other countries.  It can be added to grains (wheat, corn, and rice) during the milling process – easily, safely, and cost effectively.

The time has come to take the solution world-wide

The solution doesn’t need any more research.  The science is proven.  Fortification is inexpensive and safe.  Our sister organization, Food Fortification Initiative (FFI) provides the technical expertise to the millers, but they cannot do their work without a mandate.  The only thing keeping this from being a global solution, to taking us from science to solution, is money.

The Center works with each country to identify advocates for fortification.  We supply a country coordinator, education and technical expertise.

Based upon the rate of occurrence of spina bifida and anencephaly, we estimate that we have prevented 35,000 babies per year from being born with these disabling and often lethal birth defects.  But another 200,000 per year are still being born, resulting in deaths or requiring ongoing medical and surgical care.  In the 25 years since it was proven that folic acid would prevent these conditions, over 5 million babies have been affected.  If another 25 years go by without addressing the problem, another 5 million unnecessary deaths and disabled babies will be born.

How to measure success

The Center can easily monitor the success of a program using blood folate levels of pregnant women.  The threshold blood folate level is known.  2015 World Health Organization (WHO) guidelines state that red blood cell folate concentrations should be above 400 nanograms/ml in women of reproductive age to achieve the greatest reduction of cases of spina bifida and anencephaly.

The 80/20 rule

It is true that some countries do not have a centrally processed food that can easily be fortified.  Yet the Center is focusing on the 80% which can be prevented, and studies can be continued in parallel which would address the other 20% of childbearing age women.  There is no reason to delay fortifying grains when doing so would contribute to preventing these defects in so many children.

The Global Problem

Each year, about 200,000 children worldwide are born with folic acid-preventable spina bifida or anencephaly.

As of 2017, a total of 59 countries are preventing these birth defects through sustained mandatory folic acid fortification, but more than 100 countries do not currently have prevention programs. The main problem is that we know mandatory fortification of staple foods with folic acid will prevent almost all of these birth defects, but we are preventing only about 18% of them globally.

This is an important child health issue. The total number of cases of folic acid-preventable spina bifida and anencephaly is similar to that of polio before eradication programs, and 20 times higher than the thalidomide epidemic which also caused severe birth defects.  The high count of afflicted babies and the severity of the conditions, in the face of an achievable solution, is why we focus on this problem.

The solution for prevention of spina bifida and anencephaly has been known for over 25 years, yet there has not been a well-planned, funded, and coordinated global program to eliminate these birth defects, as there has been for polio. A main limitation for prevention is that fortification is not seen as a priority in developing countries. The knowledge of its affordability and high cost-effectiveness is lacking among nutrition regulators and policymakers. Fortification is simple in concept, but it can be difficult to implement without coordinated efforts.

The report below which was published by the Center for Spina Bifida Prevention presents the global status of prevention:

A 2017 global update on folic acid-preventable spina bifida and anencephaly