Scope of the Problem
Spina bifida and anencephaly are the two most
common types of neural tube birth defects. In spina bifida, the spine does not close
properly during the first month of fetal development. The effects of spina bifida range
from mild, with little or no noticeable disability, to severe, with limited movement and
function. Babies with anencephaly are born with most or all of the brain missing. They die
before or soon after birth.
Folic acid, a B vitamin, is essential for proper
development of the neural tube. The neural tube is completely developed by the 3rd to 4th
week after conception (about 2 weeks after the first missed menstrual period). This is
often before a woman realizes she is pregnant and well before she begins taking prenatal
vitamins; therefore, many women will not consume enough folic acid before conception or
during early pregnancy to prevent a neural tube defect.
Prevalence of Neural
Each year approximately 3,900 pregnancies are
affected by spina bifida or anencephaly:
1,500 babies are born with spina bifida
400 babies are born with anencephaly and die
1,600 pregnancies are electively terminated
after a prenatal diagnosis of spina bifida or anencephaly
More than 400 babies with spina bifida or
anencephaly are stillborn
Costs of Neural Tube Defects
Lifetime costs associated with a typical case
of spina bifida-including medical care, special education, therapy services, and loss of
earnings-exceed $500,000, translating to a total societal cost of spina bifida that
exceeds $750,000,000 per year.
Social Security Administration payments to
individuals with spina bifida exceed $82 million per year.
Tens of millions of dollars are spent on
medical care covered by Medicaid and Medicare.
CDC's National Folic Acid Program
There is some good news. If women consume 400
micrograms (mcg) of folic acid before conception through at least the first
trimester of pregnancy, 50% to 70% of potential cases of spina bifida and anencephaly
could be prevented. The National Center for Environmental Health of the Centers for
Disease Control and Prevention (CDC) is leading CDC's efforts to prevent these conditions
through a National Folic Acid Program. This program includes (1) using birth defects
surveillance data to target resources, plan interventions, and evaluate intervention
efforts; (2) educating reproductive-age women about how folic acid can prevent spina
bifida and anencephaly; (3) building partnerships to conduct and evaluate interventions;
and (4) conducting research to plan and evaluate intervention efforts. CDC also founded
the National Council on Folic Acid, which coordinates a national effort to
prevent spina bifida and anencephaly and is described in a later section.
Benefits of Taking Folic Acid
Helps prevent spina bifida and
anencephaly. Taking 400 micrograms of folic acid before and during the first
few weeks of pregnancy is the best known way to prevent anencephaly and spina bifida. To
meet the daily requirement, women can take a vitamin supplement containing folic acid, eat
a fortified breakfast cereal containing 100% of the daily recommended value of folic acid,
or carefully plan their diets to increase consumption of other folic acid-fortified foods.
May lower risk for other health
problems. All women, whether or not they plan to become pregnant, may
benefit from consuming folic acid. Some studies have shown that folic acid lowers levels
of homocysteine, a substance associated with an increased risk for heart disease and
stroke. Other studies have suggested that folic acid consumption may lower people's risk
for some cancers, such as colon and cervical cancer.
Barriers to Taking Folic Acid
Lack of knowledge
About 60 million women of childbearing age are at risk of having a pregnancy affected by
spina bifida or anencephaly, but few are aware of the risk:
Only about 13% know that folic acid can
prevent serious birth defects.
Only about 7% know that folic acid must be
taken before pregnancy.
Most don't know that the average diet contains
much less than the recommended daily amount of folic acid.
Difficulty in changing behavior. According
to a recent March of Dimes/Gallup survey, only about 30% of reproductive-age American
women (and only 19% of women younger than 25) are currently taking a folic acid supplement
daily. Making folic acid consumption a habit may be difficult when women can't
"see" or feel the positive effects. A long-term educational campaign is required
to motivate lasting behavioral change.
Lack of guidance by some health care
providers. Even though they need to provide their female
patients with information about folic acid before pregnancy, many health care providers
state that they have too many competing priorities to deliver this preventive message
Difficulty in taking pills
Many women find pills hard to swallow or think that vitamin supplements are an unnatural
way to receive vitamins and minerals. Some women find that iron in multivitamins upsets
their stomachs, and many well-intentioned women forget to take vitamins regularly.
Strategies for Preventing Spina Bifida and Anencephaly
Surveillance. Public health
professionals use surveillance- the ongoing collection, analysis, and interpretation of
outcome-specific data- to plan, carry out, and evaluate activities for protecting public
health. Through birth defects surveillance systems and research, CDC identifies causes,
rates, and patterns of occurrence of various conditions, as well as risk factors for these
conditions. Data from these activities serve as an early-warning system for trends in
birth defects and possible causes. CDC uses this information to develop screening and
prevention programs. CDC programs that track cases of neural tube defects such as spina
bifida and anencephaly include the following:
The Metropolitan Atlanta Congenital
Defects Program (MACDP):
Collects and analyzes data on congenital malformations and adverse pregnancy outcomes in
the Atlanta area. The data from this program have been used to make
national health policy.
National Birth Defects Prevention
Compiles yearly data from states with birth defect surveillance systems (currently
about 37 states). Monitors national rates and trends over time and geographic areas.
The International Clearinghouse for
Birth Defects Monitoring Systems (ICBDMS): Monitors birth-defect rates over time
across different countries, functioning as an early-warning system for international
trends in birth defects.
National Partnerships and Outreach.
A successful national campaign to eliminate spina bifida and anencephaly caused by
insufficient folic acid consumption would be impossible without the active
involvement of a coalition of committed partners. Current national activities and
partnerships include the following:
National Council on Folic Acid.
In 1997, CDC formed the National Council on Folic Acid. The council's goal is to prevent
birth defects by increasing the percentage of women who take the recommended daily amount
of folic acid. The council plans to reach this goal by educating reproductive-age women
and their health care providers about folic acid.
The council, which is currently led by the March
of Dimes Birth Defects Foundation, includes representatives from advocacy groups and
government, health care, civic, and professional associations
Council on Folic Acid
Steering Committee Members
American Academy of Family Physicians
American Academy of Pediatrics
American College of Obstetricians and Gynecologists
American College of Physicians/American Society of Internal Medicine
American Dietetic Association
American Medical Women's Association
American Nurses Association
American Pharmaceutical Association
Association of Maternal and Child Health Programs
Association of State and Territorial Health Officials
Association of State and Territorial Public Health Nutrition Directors
Association of Women's Health, Obstetric, and Neonatal Nurses
Centers for Disease Control and Prevention
March of Dimes Birth Defects Foundation
National Coalition of Hispanic Health and Human Services Organizations
National Healthy Mothers, Healthy Babies Coalition
Pan American Health Organization
Robert Wood Johnson Foundation
Shriners Hospitals for Children
Spina Bifida Association of America
United States Department of Agriculture
*As of January 1999
National Folic Acid Campaign.
In January 1999, the council began a national campaign to raise public awareness about
folic acid. Program activities include consultation, policy development, financial
support, education, training, and technical assistance.
CDC is developing messages, materials, and
distribution strategies for the campaign based on the results of health communications
research. This research will help CDC and its partners identify the most effective way to
reach their audiences. The council will implement the campaign and recruit additional
campaign partners from public health, education, and business.
Examples of these materials include-
Preventing Neural Tube Birth
Defects: A Prevention Model and Resource Guide. This comprehensive guide is
designed to provide communities with the information necessary for conducting a folic acid
promotion program to prevent spina bifida and anencephaly prevention program. CDC provided
the guide to state and local health departments, members of community-based and advocacy
organizations, and participants at a January 1999 national conference on folic acid.
Public Service Announcements. CDC
developed folic acid public service announcements (PSAs) for television. To determine the
PSAs effectiveness, CDC tested the PSA concepts with focus groups of women considering and
not considering pregnancy. CDC has also developed radio PSAs, print ads, posters, and
brochures in English and Spanish.
National Conference. In
January 1999, CDC and the National Council on Folic Acid held a conference on preventing
neural tube defects with folic acid. Representatives from government, business,
health, and community-based organizations shared their expertise and
materials, planned the prevention campaign, and attended training sessions.
State, Territorial, and
Local Partnerships. CDC also helps communities to conduct and evaluate
educational campaigns and to make folic acid awareness part of preventive health care
services to women. CDC provides resources and expertise to territorial, state, and local
health departments for developing and evaluating birth defect prevention activities such
as the following:
Georgia Folic Acid Task Force.
In 1998, this task force conducted a folic acid promotional campaign. The activities
included putting folic acid messages in Mother's Day flowers delivered by TelefloraŽ,
placing information tables in shopping malls, and conducting educational activities in
Women, Infant, and Children (WIC) clinics. The Georgia Department of Human Resources also
provided free folic acid tablets and educational brochures through family planning
Puerto Rico Folic Acid/Neural Tube
Defect Intervention. The Puerto Rico Health Department, Department of Education, and
private corporations (e.g., cereal companies, food stores, and drug store chains) are
promoting folic acid consumption for spina bifida and anencephaly prevention among women
10 to 50 years of age. About 2,000 health and education professionals have been trained to
educate women about folic acid. The health department has also established a
data-collection system for tracking rates of spina bifida and anencephaly.
Onondaga County, New York Health
Department Education Campaign. This county health department developed a
comprehensive folic acid education campaign in conjunction with several community
partners. The campaign included activities with media, health care providers, WIC
programs, schools, churches, and a variety of businesses. The health department's
evaluation of the campaign showed a substantial increase in women's knowledge about folic
acid and its role in preventing birth defects and a smaller increase in the number of
women who reported taking folic acid-containing multivitamins. The health department plans
to use the community coalitions and communications channels established for the folic acid
campaign to disseminate other public health messages.
CDC will continue to provide leadership and work
with partners to prevent neural tube defects through surveillance, research, education,
and evaluation. Next steps include the following:
Education. CDC will work with national
and state professional organizations to educate and encourage physicians, nurses,
nutritionists, and other health professionals to counsel women to consume folic acid every
day. CDC will also work with states, managed care organizations, nutritionists, and others
to develop, demonstrate, and evaluate model state and local health communication and
nutrition programs for reproductive-age women of various backgrounds.
Infrastructure building. CDC
will work with partners in industry, managed care organizations, advocacy
groups, and government programs to incorporate folic acid interventions and evaluations
into existing programs that provide services to women of reproductive age.
Applied research. CDC will conduct
behavioral research to identify barriers to increased use of folic acid supplements and
determine strategies for motivating women of various backgrounds to take a folic acid
supplement. CDC will conduct research to design and evaluate strategies for training
health care providers to educate their patients about folic acid. CDC will also continue
research to determine whether folic acid can prevent other birth defects, such as cleft
lip and palate and certain heart defects.
Evaluation. CDC will collaborate with
its partners to determine the effectiveness of prevention efforts through (1) periodic
surveys of women regarding their use of folic acid supplements; (2) measurements of blood
folate levels in selected populations; and (3) monitoring of health outcomes reported by
state and national surveillance programs.