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The Unnecessary Epidemic of Folic Acid-Preventable Spina Bifida and Anencephaly

With great determination and creativity, Stevenson and colleagues1 launched a statewide program to prevent folic acidpreventable spina bifida and anencephaly—2 of the most common and severe birth defects. Their work is a model of what should occur in every state in the country. They implemented three related activities— statewide, comprehensive neural tube defect (NTD) surveillance, a folic acid supplementation program for high-risk women who have had a NTD-affected pregnancy, and a statewide folic acid education campaign for all women of reproductive age. From their report in this issue of Pediatrics, we can see how well they did. Surveillance was a success. From October 1992 through September 1998, they identified 360 NTD births among 278 122 births. They monitored the secular trend and saw a decrease from near 2 per thousand to near 1 per thousand. They found that 82% of the NTD were isolated. They found that 4 cases of spina bifida were associated with valproic acid exposure during pregnancy. They identified the increased risk for NTDs in women with insulindependent diabetes mellitus. Women with insulindependent diabetes produced 9 NTDs or 2.5% of the cases, while these women have only about .5% of the births. Thus, the South Carolina group has shown not only that a good surveillance system can provide trend data, but that it can also identify subgroups of women needing special attention if we are to prevent their infant’s birth defects. There is the need for more work to determine how to reduce the NTD risk for women with epilepsy and for women with insulindependent diabetes mellitus. The folic acid program for women with a high-risk for NTDs was a success. One hundred eight women who had had infants with isolated NTDs had 132 subsequent pregnancies. Folic acid was used appropriately in 85.6% (113/132) of those pregnancies and there were no NTD pregnancies among those who took folic acid. There was a case of anencephaly among the 19 births to these high-risk women who did not take folic acid. These results are similar to those in Texas where there was a well-funded surveillance and high-risk program.2 The Texas group documented 148 subsequent pregnancies among 350 women who had been identified as having had an NTD-pregnancy. Eighty-nine percent of the 148 women had used folic acid before conception. The only recurrence was in a woman who would not meet with the field staff and never received counseling or folic acid supplements (R. E. Stevenson, personal communication, March 2000). Thus, Stevenson and colleagues and the Texas group have set the standard. Every state in the country should establish a program to identify all women who have had NTD-affected pregnancies and implement a program that ensures that at least 85% of the subsequent pregnancies to these women occur while they are appropriately consuming folic acid. Just think of the money such a program will save Medicaid in each state, to say nothing about the profound positive effect that preventing NTDs would have had on thousands of children and their families. The campaign in South Carolina1 to reach all women of reproductive age was a success and a failure. It dramatically increased the proportion of women using supplements appropriately, but it reached less than half of the women. The investigators used 2 indicators of regular use of folic acid by women of reproductive age. One of these was folic acid ingestion by women who had been pregnant and who had not had a child with a birth defect. The other was folic acid ingestion determined by a telephone survey of women of reproductive age. Surveys of all women of reproductive age will have a higher proportion of folic acid supplement use than surveys of women who have babies. This phenomenon occurred because women who are having babies are younger than all women of reproductive age and the use of multivitamins is strongly related to increasing age. In South Carolina the initial use of folic acid before pregnancy involved only a small proportion of the pregnant control group. In the first year, it was 8% and by the fourth year it had doubled to 15%. Then in the next year it doubled again. These data suggest that an intense, well-financed (about $1.0 million a year) multifaceted educational program can substantially increase the proportion of women who consume 400 mg per day of synthetic folic acid before pregnancy, as recommended by the Public Health Service, the Institute of Medicine, the American Received for publication Apr 27, 2000; accepted Apr 27, 2000. Reprint requests to (R.L.B.) Alfred I. duPont Hospital for Children, Research Department, Room 308, A/R Building, Box 269, Wilmington, DE 19899. E-mail: rbrent@nemours.org PEDIATRICS (ISSN 0031 4005). Copyright © 2000 by the American Academy of Pediatrics.