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Statement by
Jos� F. Cordero, M.D., M.P.H.
Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, U.S. Department of Health and Human Services
on
Birth Defects: CDC Strategies for Prevention and Ensuring Quality of Life
before the
Senate Committee on Health, Education, Labor, and Pensions Subcommittee on Children and Families

July 26, 2002

I am Dr. Jos� Cordero, Director of the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention (CDC). I am a pediatrician and geneticist, with 29 years of public health experience related to birth defects, developmental disabilities and children's health.

I am very pleased to be here today to discuss the extremely important public health issues related to birth defects prevention and ensuring quality of life for individuals who have a birth defect. More than 150,000 infants are born with a birth defect each year. Many of these babies do not survive, and birth defects are the leading cause of infant mortality in the United States. For those babies that do survive, they often experience lifelong disability. In addition to physical impairments, birth defects are closely linked with a variety of cognitive and developmental disabilities�7% of children with a birth defect also have a serious developmental disability. The challenges that confront these children over the course of their lives, including access to medical care and preventive health services, the development of secondary conditions and social isolation, are critical public health issues.

With the establishment of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) in April 2001, CDC has been given increased visibility for its efforts in these areas. However, while the organizational structure for NCBDDD is relatively new, CDC's commitment to these important issues is not. Since 1968, with the development of the Metropolitan Atlanta Congenital Defects Program, CDC has made birth defects monitoring, research and prevention a priority. In 1985, we initiated a similar program for developmental disabilities. Over the years, efforts in these two areas were focused on two primary goals�the prevention of birth defects and developmental disabilities for which causes have already been identified and the identification of causes for those which have not. However, we also recognized that the public health community's responsibility does not stop with prevention. We cannot afford to ignore the public health needs of the 54 million Americans who have disabilities. As a result, in 1998, we established our disability prevention program and dedicated ourselves to a prevention research, monitoring and intervention program aimed at identifying and implementing strategies that will eliminate challenges to optimal health and development and promote wellness for all Americans, including those who have a disability.

Prevention works.

When it comes to the prevention of birth defects and developmental disabilities, we have already seen a great many public health successes. Through immunization, we have virtually eliminated the mental retardation, hearing and vision impairments associated with congenital rubella syndrome, as well as mental retardation from Hib meningitis. We have seen drugs which caused devastating birth defects, such as thalidomide, denied entry to the United States market or tightly controlled. Removing lead from gasoline has meant that far fewer children have blood lead levels that might adversely affect their intelligence, behavior and development. These successes have been achieved through close coordination and collaboration between Federal agencies�including CDC, the National Institutes for Health, the Food and Drug Administration, Health Resources and Services Administration�and with the private sector.

More recently, we have seen the results of many years of prevention research pay off when we learned that increasing consumption of the B vitamin folic acid resulted in significant reductions in the rates of neural tube defects�a category of common birth defects which include spina bifida and anencephaly. In 1992, the United States Public Health Service issued a recommendation that all women of childbearing age consume 400 micrograms of folic acid to reduce their risk for these serious birth defects.

As a result of this recommendation, CDC immediately began The National Folic Acid Campaign to provide women with information about folic acid. It is especially important for women to know that in order to prevent these birth defects, folic acid must be taken before conception and during early pregnancy. Educational materials have been developed stressing the use of folic acid prior to conception and these materials are provided to state and local campaigns. The National Council on Folic Acid, a coalition of non-profit organizations, has been established to assist in this effort. Two key members of the National Council, the Spina Bifida Association of America and the March of Dimes, will also be testifying here today. In 1996, the Food and Drug Administration also responded to this compelling scientific information regarding folic acid and authorized manufacturers of enriched cereal grain products to fortify these products with folic acid. All such products were required to be fortified by January 1998.

We may be beginning to see the results of these public health education and fortification efforts. Data published just last week from 24 population-based state birth defects surveillance programs supported by CDC indicate that the prevalence of spina bifida decreased 31% from 1995 (pre-fortification) to 1999 (post-mandatory fortification). Additionally, the 1999 data from the National Health and Nutrition Examiniation Survey (NHANES) on folate blood concentrations reveal substantial increases among women of childbearing age. The trend in 1999 already exceeds the Healthy People 2010 goal to increase the median red blood cell folate level to 220 ng/mL among nonpregnant women 15-44. Further research, which includes not only measuring rates of birth defects but also includes measuring women's folic acid intake, is needed to confirm that these downward trends are a result of the fortification and public health education. However, these results are extremely encouraging, as are the data emerging from other CDC-supported projects that suggest that folic acid may also play a role in preventing other birth defects, such as imperforate anus and abdominal wall defects known as omphalocele.

Research holds new promise.

Epidemiologic research is the cornerstone for our efforts to identify new causes of birth defects and developmental disabilities. Translating these epidemiologic findings into effective public health strategies through applied research represents the next step to making prevention a reality. CDC has underway a broad range of research, including both epidemiologic and applied, that will be providing the foundation for our next prevention success stories.

CDC's Centers for Birth Defects Research and Prevention, first established in 1996 and formalized with the passage of the Birth Defects Prevention Act of 1998 (Public Health Law 105-168), serve as a cornerstone for these efforts. The Centers were established in 7 states with nationally-recognized expertise in birth defects surveillance and research. CDC supports and coordinates the overall activities of the Centers, and participates as an eight study site in the National Birth Defects Prevention Study (NBDPS). This study�one of the largest ever conducted on the causes of birth defects�is a key part of the program of research for the Centers. The study will provide the nation with a continuing source of information on potential causes of birth defects and will serve as a mechanism for identifying new substances in our environment that are harmful to developing babies. In addition to participating in the NBDPS, each individual Center is undertaking its own center-specific research agenda on issues including nutritional, environmental and behavioral factors associated with birth defects, financial and other costs of birth defects, and birth defect prevention research.

CDC is also supporting similar research programs for developmental disabilities. The Children's Health Act of 2000 mandated the creation of centers for excellence in autism and developmental disabilities epidemiology, and in 2001, CDC established CADDRE�Centers for Autism and Developmental Disabilities Research and Epidemiology. This collaborative network of four centers plus CDC will collect and analyze information on the incidence, correlates, and causes of autism and related developmental disabilities.

Our collaborations on research to identify causes for birth defects and developmental disabilities are not limited to institutions in the United States. CDC has initiated a very important collaboration with Denmark to help improve our understanding of the potential causes of cerebral palsy�a condition which affects 10,000 babies born in the United States each year. As part of this collaboration, we will be undertaking a case-control study of the relationship between infection in pregnancy and cerebral palsy, using cases identified in the Danish Cerebral Palsy Register and archived newborn blood samples. Denmark has a unique combination of national public health data systems that is not found elsewhere in the U.S. or abroad. These unique Danish data systems can all be linked by a universal personal identifier. Thus, they provide much important information (such as health, medical, and sociodemographic information) to carry out epidemiologic studies of reproductive and developmental outcomes. Also, because these data systems contain information on large numbers of individuals over long periods of time, studies can be made with an unusually high level of statistical power. For reasons like these, such collaborations are invaluable in providing timely and relevant information that can be put to immediate use in the development of prevention strategies.

Other prevention-oriented research currently supported by the CDC includes Legacy for Children and Project Choices. Legacy for Children is a program consisting of randomized, controlled, longitudinal research projects being implemented at the University of Miami and the University of California at Los Angeles. These projects examine the potential for improvement in child developmental outcomes through interventions designed to influence parenting behavior. The early years of life�especially from birth to age five�are crucial for cognitive and social/emotional development. Parents play a critical role in their children's development and are responsible for their children's environment. Children develop within the context of their family and their development is affected by the nature of the relationship with their parents. Previous early intervention efforts have typically included early education for children in child care centers and social or mental health services for the parents in their role as adults, with only marginal attention devoted to parenting behavior. The interventions initiated by CDC focus on parenting behaviors and the relationship of the parent with his or her own child. Results from these projects will be available over the next few years and will help determine what are the critical components of early intervention programs for children at-risk for developmental delay.

Drinking alcohol during pregnancy poses a serious threat to the health of the unborn child. While overall alcohol use during pregnancy has been declining since 1995, rates of frequent drinking and binge drinking remain high and thus continue to pose a risk for many women. Interventions aimed at reducing alcohol consumption must begin before pregnancy because birth defects associated with prenatal exposure to alcohol can occur in the first 3 to 8 weeks of pregnancy, before a woman even knows that she is pregnant.

In an effort to reduce the number of children born with alcohol-related birth defects, CDC is working to develop and test interventions to identify women at high risk for an alcohol-exposed pregnancy and help them to reduce their alcohol intake and postpone pregnancy until they stop or limit their drinking. Project Choices is the centerpiece of CDC's research efforts aimed at preventing alcohol consumption during pregnancy. CDC has demonstrated that women in certain community-based settings (such as alcohol and drug treatment centers, jails, and primary care centers serving low income populations) have a seven-fold higher risk for an alcohol-exposed pregnancy. However, information on how best to reduce this risk was lacking. To address this data gap, CDC initiated Project CHOICES: a multi-site collaborative study involving three universities (Nova Southeastern University, University of Texas at Houston, and Virginia Commonwealth University). Results from the first phase of the study found that two-thirds of all women who were at risk prior to the intervention were no longer at risk at the time of the six-month follow-up visit. The intervention is now being tested more rigorously through a randomized clinical trial.

Monitoring our progress and measuring our success.

As more causes for birth defects and developmental disabilities are identified, and prevention strategies are implemented, it will become even more important for the public health community to have good information regarding the number of cases of birth defects and developmental disabilities. Only by having such information will we be able to ensure that our programs are having their desired effect and make any needed adjustments and improvements. In addition, monitoring rates of birth defects and developmental disabilities over time also enables us to determine whether rates are varying over time or in different geographic regions. Such variations in rates may provide clues to additional causes or possible need for concern.

CDC is working toward the establishment of comprehensive monitoring and tracking programs to accomplish these objectives, and currently CDC:

• Conducts model surveillance programs to monitor the prevalence of birth defects and developmental disabilities in the metropolitan Atlanta area.
• Provides financial and technical support for state-based birth defects surveillance through cooperative agreements with 35 states, as well as through a collaborative effort of state programs known as the National Birth Defects Prevention Network that collects and disseminated state-based birth defects surveillance data.
• Supports the Fetal Alcohol Syndrome Surveillance Network (FASSNet) in five states.
• Supports the Autism and Developmental Disabilities Monitoring Network (ADDM) in four states.
• Funds 30 state-based Early Hearing Detection and Intervention (EHDI) tracking programs.
• Continually monitors folate in women through the NHANES.
• Works with States to improve the timeliness and quality of reporting of birth defects through the vital statistics systems.

Ensuring health, wellness and quality of life completes the picture.

While we are very optimistic about the our ability to use science to identify new causes of birth defects and developmental disabilities and the ability of the public health community to translate this science into public health action, we know that our prevention efforts will never be 100% successful. For example, we estimate that folic acid has the potential to prevent 50-70% of all neural tube defects. There are still other causes of neural tube defects that remain unknown. Until the causes of all birth defects are identified and prevention strategies are implemented, close to three percent of all babies will still be born with a birth defect. Most of these children will share the experience of tens of millions of other Americans who are living with a disability. For that reason, CDC has also placed a high priority on research focused on promoting health and wellness among with people with disabilities.

Working with universities and other research organizations, CDC conducts research to develop a better understanding of the varied and unique health conditions of people with disabilities. CDC seeks to identify health risks and protective factors and to measure and develop effective health promotion activities to prevent the secondary conditions related to living with a disability. CDC is currently funding 11 projects in academic settings that develop new methods for promoting health and wellness among people with disability. One particularly promising research project will be rigorously testing a community-based wellness program, known as "Living Well," which has previously been shown to reduce disability due to secondary conditions by 37% and reduced physicians visits by 45% over six months. This empirically grounded health promotion intervention, delivered by community-based consumer-controlled independent living centers, offers a model for both improving health and independence of adults with physical disabilities, as well as containing medical services costs within a managed-care context. The new study will evaluate the model with a larger, more representative sample and a more rigorous design. Additional data on costs and preferences will be developed to conduct a cost- effectiveness assessment. The researchers will also look at how adults with physical disabilities can maintain and improve their health after participating in a health promotion program to further enhance cost-effectiveness.

In addition, CDC is working with state health departments to improve their capacity for implementing programs to address the public health needs of people with disabilities. Currently, CDC is supporting such activities through cooperative agreements with sixteen states. Specific programmatic efforts include improving state surveillance activities, conducting health promotion interventions, developing and monitoring policies affecting people with disabilities, and facilitating partnerships between state- and research- or service-based agencies. These programmatic efforts do not focus on specific types of disabilities, but rather they address common issues in a variety of cross-cutting disability domains including communication, learning, mobility, and personal care/home management.

Finally, CDC recognizes the importance of working with the health care delivery system to ensure that people with disabilities have access not only to the specific types of medical treatment and care that are required as a result of their disability, but also access to important preventive health services. For example, CDC has worked to ensure that women with a mobility impairment who use a wheelchair have access to mammograms through the Breast Cancer Early Detection Program. To ensure this, CDC works with state programs to purchase special equipment. In addition, CDC is working to ensure that people with disabilities have access to information that will help them reduce health risk behaviors such as tobacco use and sedentary lifestyles.

However, there are major challenges that remain ahead of us. While we can take great pride in the advancements that have been made in increasing the life expectancy of individuals with disabilities, we also must recognize that the health care system is not adequately prepared to deal with the consequences of our success. The life expectancy of an individual with Down Syndrome has increased from 1 year to 49 years since the late 1960s. Just several decades ago, very few children with spina bifida survived at all. Because these changes have occurred over a relatively short period of time, most physicians have had no experience dealing with an adult with these types of conditions. In 1994, SBAA and United Cerebral Palsy sponsored a symposium entitled "Preventing Secondary Conditions Associated with Spina Bifida or Cerebral Palsy." Then, as now, one of the major issues of concern to people with spina bifida and cerebral palsy, their families and their health care providers was the issue of transition from pediatric care. The need is particularly acute in teen-age years. These are difficult years for any young person, but for a young person with a disability, such as spina bifida, they can be even more challenging. For example, teenagers with spina bifida often experience serious medical complications. In addition, these teenagers often need assistance in dealing with both physical and social challenges associated with catheterization, skin care, and cleanliness. Social, educational, and vocational support are also essential to ensuring full participation as an adult.

It is clear that, in addition to developing programs that address the public health needs of people with disabilities, there is a need to educate healthcare providers on the issue of disability across the lifespan. Addressing these issues will also provide an opportunity to begin to prepare our public health and health care systems for the challenges presented by the aging of the American population. I look forward to working toward future successes in these areas, and recognize that achieving them will require broad-based partnerships and collaborations with research, public health, medical and voluntary organizations. We have a long way to go, but we are already moving forward. I think we can and will do much more in the future.

I appreciate this opportunity to share with you this information on CDC's activities to prevent birth defects and developmental disabilities and ensure quality of life for individuals who have experience disability. Our goal is to ensure optimal health and wellness�beginning before birth and continuing throughout the lifespan. To achieve this goal, we undertake epidemiologic and prevention research, implement tracking and monitoring programs, and partner with health care and voluntary organizations who share our mission. I hope you found this overview useful, and I will be happy to answer any questions that you may have.

Thank you.