We tend to think of a disease or a disorder like spina bifida as a medical problem requiring the competent, caring hands of doctors, nurses and the like. So, naturally, we leave the prevention and cure in the safe hands of medical researchers, scientists, government agencies and even businesses. But all these hands — from those affected, to those who care, treat and work towards a cure — belong to people who need a supporting hand from all of us to make the biggest impact.
According to Godfrey P. Oakley, a pioneer in the folic acid fortification movement and an international advocate for the prevention of spina bifida “F” and director of The Center for Spina Bifida Research, Prevention and Policy and professor of epidemiology at the Rollins School of Public Health at Emory University, the elimination of preventable spina bifida “F” and anencephaly “F” by 2024 is an achievable goal.
That is only a decade away. So how do we do it?
Play a Hand in Awareness and Education
Every year 180,000 babies are born worldwide with known preventable neural tube defects. This is a personal and global tragedy.
Spina bifida is a permanently disabling birth defect caused by a failure in the proper closure of the neural tube and its coverings during early pregnancy. Anencephaly is a fatal defect in which part of the brain never develops.
Like most diseases and disorders, there is not just one face of spina bifida. It comes in multiple forms and from various causes, not all of them are known yet. Three forms with known causes are:
- Spina Bifida “F” and Anencephaly “F” caused by a folate deficiency in pregnant women.
- Spina Bifida “V” caused by the drug Valproate (for epilepsy, neuropathic pain syndromes, migraine, and bipolar disorders) in pregnant women.
- Spina Bifida “DM” caused by insulin dependent diabetes in pregnant women.
Currently only 25% of preventable neural tube defects are actually being prevented worldwide.
Play A Hand in Prevention
Folic acid is a synthetic form of folate, vitamin B9, which is found in leafy greens. Folate is needed for cell growth and blood production and, therefore, a particularly important micronutrient for fetal development in pregnant women and young children.
In Boston in the mid- 1930s, the rate for spina bifida and anencephaly was 50 per 10,000 which is the current rate in most of India and much of northern China. In these countries about 90% can be prevented simply by folic acid. The rate in Atlanta in 1968 was about 25 per 10,000.
In 1998, the United States implemented mandatory folic acid fortification of enriched cereal grains (wheat, corn meal, rice) used primarily in breads, cereals and pastas. This fortification along with an increased use of prenatal vitamins has virtually eliminated preventable spina bifida “F” and anencephaly “F” in the United States.
Unfortunately, the rest of the world has yet to catch up. Only 70 countries have implemented folic acid fortification requirements of a food staple.
If you are (or know of) a woman of reproductive age, make sure to consume 400 mg of folic acid per day to prevent spina bifida and other neural tube defects.
If you are (or know of) a woman of reproductive age who is taking Valproate or has insulin dependent diabetes, know the risks of neural tube defects before planning a pregnancy and discuss options with your doctor.
Currently, non- folic acid preventable neural tube defects occur in about 5 per 10,000 birth/pregnancies.
Play A Hand in Activism
More research is needed. Spina Bifida still has unknown causes, preventions and cures. Those living with spina bifida today need better treatment to extend their life expectancy, reduce complications from the disorder and increase their quality of life.
While at the CDC’s Division of Birth Defects and Developmental Disabilities, Oakley and his team convince the U.S. Food and Drug Administration to mandate folic acid as a food additive in 1996. Since then, the United States has seen a 40% reduction in the number of babies born with spina bifida and anencephaly. That was only the beginning. Now, 60 countries mandate folic acid fortification for one or more milled grains—flour, maize, and rice. But there many more countries to convince.
Folic acid fortification needs global partners to champion this public health intervention that is affordable, achievable and effective within local communities and to government agencies.
Play A Hand in Funding A Cure for Spina Bifida
On Sunday, May 15th, 2016 Godfrey Oakley, along with tournament organizers Brenda Shavin and Janet Edwards will be hosting Godfrey’s Grand Slam Bridge Benefit at Emory University’s Rollins School of Public Health.
But you don’t need to be a bridge player to play a hand in their effort to eliminate spina bifida “F”.
Donations can be made at Make A Gift Online, Emory University. Designate “Public Health/Rollins School of Public Health” and specify “Center for Spina Bifida Research, Prevention and Policy.”
To learn more about the compelling history of folic acid fortification for the prevention of spina bifida and the role of the Centers for Disease Control and Prevention:
My cousin was born with spina bifida. His parents didn’t know about folic acid then.
It might not have been the form that is folic acid preventable. But, yeah seems wild that a little bit of vitamins could make such a difference. Who knows maybe they will find causes that are as easily preventable with the yet unknown forms of spina bifida. Hugs to your cousin.
Thank you for a great article, Linda. The only “comment” I would like to make is that Spina Bifida is not a disease, but a developmental disorder, or, as you correctly refer to it later on, a birth defect. Through the years Spina Bifida has been surrounded by a lot of negative perceptions and the idea that it might be “a disease which you can catch” would only add to that. Even if there are also “non communicable disease”, even those are not the same as a lifelong condition such as Spina Bifida. Which doesn’t have to be a tragedy, by the way. Other than that, thank you very much for helping to raise awareness and disseminating important information.
Renee, Thank you for your great comment and link to International Federation for Spina Bifida and Hydrocephalus (IF) http://ifglobal.org/en/who-we-are#sthash.KBUxIVhh.dpuf.
Please know that my reference to the tragedy of Spina Bifida was not directed at those who live with it, but the lack of prevention when the cause is known and the method of prevention is simple and effective.
Perceptions are difficult to change so I understand your concern. Attitudes may be different internationally, but with the prevalence of cancer, kidney and heart diseases I think most people in the US realize “disease” is not necessarily something you can catch. Strangely, my own misperception, if asked to respond off the top of my head, would have been that disease was physical and disorder was mental. With more thought, I know that to not be true. 🙂 Thank you for clarifying.