National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect

Defining the National Agenda for Fetal Alcohol Syndrome and Other Prenatal Alcohol-Related Effects

Prepared by
Mary Kate Weber, M.P.H.¹
R. Louise Floyd, D.S.N.¹
Edward P. Riley, Ph.D.²
Dixie E. Snider, Jr., M.D.^3
1Division of Birth Defects and Developmental Disabilities
National Center on Birth Defects and Developmental Disabilities
²San Diego State University
San Diego, California
³Office of the Director
Centers for Disease Control and Prevention

The material in this report originated in the National Center on Birth Defects and Developmental Disabilities, José F. Cordero, M.D., Director, and the Division of Birth Defects and Developmental Disabilities, Joseph Mulinare, M.D., M.S.P.H., Acting Director.

Summary

Prenatal alcohol exposure can lead to serious birth defects and developmental disabilities. A need exists to develop effective strategies for both children with fetal alcohol syndrome (FAS) or other prenatal alcohol-related effects and for women at high risk for having an alcohol-exposed pregnancy. Since the syndrome was identified approximately 30 years ago, advancements have been made in FAS diagnostics, surveillance, prevention, and intervention, but a substantial amount of work remains. Collaborations among partners in federal, state, and local agencies, academia, clinical professions, school systems, and families are critical to developing and implementing successful efforts related to FAS and fetal alcohol effect (FAE). In 1999, Congress directed the Secretary of the U.S. Department of Health and Human Services to convene the National Task Force on FAS and FAE (the Task Force). CDC's National Center on Birth Defects and Developmental Disabilities, Fetal Alcohol Syndrome Prevention Team, coordinates the Task Force and manages its operation. Since the Task Force was chartered in 2000, Task Force members, with input from multiple partners, have convened to deliberate and determine the Task Force mission, goals, and priority concerns to be addressed. This report describes the structure, function, mission, and goals of the Task Force and provides their first recommendations. An explanation of how the Task Force recommendations were generated and the Task Force's next steps are also reported.

Background

Prenatal alcohol use is one of the leading preventable causes of birth defects and developmental disabilities. According to the 1999 Behavioral Risk Factor Surveillance System, 12.8% of women reported drinking alcohol during pregnancy (1). Children exposed to alcohol during fetal development can suffer multiple disorders that range from subtle changes in I.Q. to profound mental retardation. They can also suffer growth retardation and be born with birth defects of major organ systems. One of the most severe outcomes is fetal alcohol syndrome (FAS), which includes central nervous system disorders, growth retardation, and facial malformations. CDC studies have documented FAS prevalence rates ranging from 0.2 to 1.5/1,000 live births (2--4).

FAS was first described in scientific literature in the United States approximately 30 years ago (5). Since that time, advancements have been made in FAS diagnostics, surveillance, prevention, and interventions. Disorders related to prenatal alcohol exposure have generated substantial interest and activity among CDC's partners (e.g., federal, state, and local agencies; school systems; academicians and clinicians; advocates; and families) and affected persons. However, additional work still needs to be done to prevent prenatal alcohol-related disorders and effectively intervene with children and families affected by them. Problems that still need to be addressed include 1) raising public awareness regarding the dangers of alcohol use during pregnancy and the adverse outcomes associated with prenatal alcohol exposure (i.e., FAS and other alcohol-related effects); 2) educating and training health and social service professionals concerning how to identify and intervene with women at risk for alcohol-exposed pregnancies; 3) developing effective intervention programs for children affected by prenatal alcohol exposure; 4) promoting and supporting basic research to identify the etiology and mechanisms involved in FAS; and 5) improving the quality of life of affected persons and families.

Introduction

In 1998, the U.S. Congress recognized the significance of a coordinated effort to address the concerns related to FAS and fetal alcohol effect (FAE). The Secretary of the U.S. Department of Health and Human Services (DHHS) was directed through the Public Health Service Act, Section 399G (42 U.S.C. Section 280f, as added by Public Law 105-392) to establish a National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect (the Task Force) that would 1) foster coordination among all governmental agencies, academic bodies, and community groups that conduct or support FAS and FAE research, programs, and surveillance; and 2) otherwise meet the needs of populations impacted by FAS and FAE. On May 17, 2000, in accordance with Public Law 92-463, the Task Force was chartered. Authority to establish the Task Force was delegated to CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD). NCBDDD's Fetal Alcohol Syndrome Prevention Team was assigned primary responsibility for establishing the Task Force and managing its operations. The Task Force function, as outlined in its charter (6), is to

• advise persons involved in federal, state, and local programs and research activities of FAS and FAE regarding such topics as FAS awareness and education for relevant service providers and the general public (including school-aged children and women at risk), medical diagnosis for FAS and FAE, prevention and intervention strategies for women at risk, and essential services for affected persons and their families;
• coordinate its efforts with the DHHS Interagency Coordinating Committee on Fetal Alcohol Syndrome (ICCFAS); and
• report, on a biennial basis, to the DHHS Secretary and relevant committees of Congress on the current and planned activities of the participating agencies.

The Task Force includes 12 members and the chair. Members are selected by the DHHS Secretary, or designee, from authorities knowledgeable in FAS and FAE, including members of the academic community; clinicians; representatives from federal, state, and local government agencies and offices; parents or legal guardians of persons with FAS and FAE; and representatives from advocacy and research organizations. ICCFAS, coordinated through the National Institute of Alcoholism and Alcohol Abuse (NIAAA), is a committee of representatives from federal agencies working on FAS-related activities. The chair of the ICCFAS is a standing member of the FAS/FAE Task Force. Partners regularly attend the Task Force meetings and play a vital role in the process.

Task Force Methods

After committee appointments were confirmed, the Task Force convened to identify priority concerns. In December 2000, during the Task Force's inaugural meeting, working groups were formed to begin addressing key priorities. In keeping with recommendations from the Institute of Medicine Committee on FAS, the Task Force used the term alcohol-related neurodevelopmental disorder (ARND) to denote cases with evidence of central nervous system neurodevelopmental abnormalities that have been linked in clinical or animal research to prenatal alcohol exposure, but that do not meet the diagnostic criteria for FAS (7). ARND prevalence is believed to be approximately three times greater than FAS (8). The Task Force engaged in a strategic planning process to clarify its role by creating a mission statement and goals. The Task Force's mission is to prevent FAS and ARND and to promote effective, lifelong interventions for those affected. Task Force goals are to 1) advise and foster coordination among all state, local, and federal agencies; tribal councils; and other private entities regarding FAS and ARND concerns; 2) promote communication and education regarding the adverse conditions associated with prenatal alcohol use; 3) identify research needed to develop effective strategies for preventing and treating FAS and ARND; 4) assess what services are available and identify gaps in needed services for women at risk and persons affected by prenatal alcohol exposure; and 5) ensure that appropriate diagnostic and treatment services are made available to women at risk for an alcohol-exposed pregnancy and to children and adults with FAS and ARND. By using its mission statement and goals as a foundation, the Task Force developed recommendations regarding the most critical concerns.

Task Force Recommendations

Through a consensual group process, occurring first in working groups and then with the full committee, the Task Force generated its first recommendations. Certain Task Force members are scientists knowledgeable in FAS and ARND whose ideas are based on the best evidence to date; however, the following recommendations also incorporate the insights of members who care for or provide services to affected children or provide substance abuse services to women at risk for an alcohol-exposed pregnancy. The initial working groups were combined into two major groups, the Research Working Group and the Services and Public Awareness Working Group.

The purpose of the Research Working Group was to evaluate existing FAS and ARND research and make recommendations concerning needed actions to remedy deficiencies in high-priority areas. This group generated recommendations 1--6. The Services and Public Awareness Working group identified concerns that need to be explored to ensure the availability of high-quality, effective services for women at risk for an alcohol-exposed pregnancy and for persons with FAS or ARND, and to achieve an increased level of visibility and public awareness regarding concerns of prenatal alcohol use, FAS, and ARND. This group generated recommendations 7--15.

Task Force recommendations are as follows:

1. Develop a clinical case definition for diagnosing FAS, including a neurocognitive phenotype, and begin work on establishing a clinical case definition for ARND.
2. Develop a uniform surveillance case definition for FAS and begin formative work on a uniform surveillance case definition for ARND.
3. Develop a white paper to review and summarize relevant epidemiologic research addressing the scope of the problem, prevalence, risk factors, impediments to diagnosis, and number of women at risk for an alcohol-exposed pregnancy.
4. Develop a white paper to review the evidence for effective prevention and treatment strategies for women at risk for or engaging in prenatal alcohol use. The report should describe women at risk, identify barriers to implementing effective strategies, and proscribe against implementation of untested models or models that are not evidence-based.
5. Develop a health services research agenda focusing on families of persons with FAS and ARND that address such concerns as why certain families do well and stay together, the impact of FAS and ARND on families relative to other birth defects, and how the legal system deals with FAS and ARND.
6. Develop a science research agenda, including translational research that brings basic research findings to the clinical domain (e.g., neuroimaging), and address concerns of maternal and fetal susceptibility to FAS and ARND.
7. Complete a profile of state, tribal, and private entities with existing services for persons with FAS and ARND and women at risk for an alcohol-exposed pregnancy; the profile should include eligibility criteria and ongoing educational efforts for professionals regarding FAS and ARND.
8. Develop an agenda that will lead to a national standard of care for persons with FAS and ARND during their life
span, including best practices and plans for dissemination of standards to relevant health-care professionals.
9. Endorse a national coordinated media campaign and request that ICCFAS recommend how to coordinate this effort among all federal agencies.
10. Endorse the U.S. Surgeon General's Advisory statement regarding drinking during pregnancy, and urge that the statement be reissued as part of the coordinated national media campaign.
11. Contact the Office of National Drug Control Policy to recommend inclusion of information regarding FAS and ARND in their resource materials.
12. Develop a checklist of essential state services needed to prevent FAS and ARND, to treat persons with FAS and ARND and their families, and to better identify women at risk for having an alcohol-exposed pregnancy.
13. Develop and disseminate a plan for systemwide education regarding prenatal alcohol-related disabilities to be offered to professionals in health services, judicial services, education, child welfare, vocational rehabilitation, juvenile justice, maternal child health clinics, and disabilities services and prevention.
14. Develop and disseminate a kindergarten--grade 12 curriculum to address FAS, ARND, and prenatal alcohol use.
15. Investigate incorporating information related to prevention and treatment of FAS and ARND into the credentialing requirements for teachers, juvenile justice workers, lawmakers, and health-care professionals (e.g., include FAS-related questions on state board exams).

Next Steps

As a first step, the Task Force has been working closely with CDC and other federal agencies to address these recommendations in a comprehensive and coordinated fashion. Because work in areas related to the recommendations is already under way, and expertise exists across federal agencies, collaboration between the FAS/FAE Task Force and ICCFAS is essential. Next steps include identifying which agency will take the lead on each recommendation and collaborating with partners within and outside of the federal system to devise an implementation plan for these recommendations.

Certain initiatives already under way focus on the Task Force recommendations. In 2002, CDC received a Congressional mandate to develop guidelines to diagnose FAS and other conditions resulting from prenatal alcohol exposure, incorporate these guidelines into the curricula of medical and allied health students and practitioners, and disseminate curricula to and provide training for the target audiences regarding these guidelines. CDC will coordinate this activity with the Task Force to develop diagnostic and surveillance guidelines for FAS. These efforts address Task Force recommendations 1 and 2. In addition, CDC recently solicited proposals to fund four regional training centers for the education and training of medical and allied health students and professionals concerning FAS and other prenatal alcohol-related disorders. These centers will develop, conduct, and analyze population-based surveys of medical and allied health students and practitioners to understand their knowledge, attitudes, and beliefs regarding the diagnosis, treatment, and prevention of FAS and other prenatal alcohol-related disorders. The surveys will also assess respondents' previous training experiences, practices, and educational needs, and barriers to diagnosis and treatment. On the basis of these findings and a review of existing curricula, the centers will develop, implement, and evaluate educational curricula for medical and allied health students and practitioners that incorporate diagnostic guidelines for FAS and other prenatal alcohol-related disorders. This effort addresses the education-related recommendations, specifically recommendations 13 and 15.

The FAS Center for Excellence, administered by the Center for Substance Abuse Prevention, Substance Abuse and Mental Health Services Administration, was recently established under section 519D of the Children's Health Act of 2000. The FAS Center for Excellence has conducted a series of town hall meetings across the United States to gather information regarding the concerns of FAS- and ARND-affected families and communities. These findings will provide further information for implementing the recommendations, including the recommendations related to public awareness of FAS and ARND prevention and the availability of services. In addition, the FAS Center for Excellence has initiated an environmental scan aimed at highlighting model programs for FAS prevention and treatment and identifying gaps in existing service delivery systems. These activities address recommendations 5, 7, and 8. NIAAA sets the basic sciences research agenda for FAS and other prenatal alcohol-related outcomes and supports its implementation through the National Institutes of Health grant process (recommendation 6). NIAAA also convenes and chairs the ICCFAS and, thus, has lead responsibility for ensuring coordination of efforts among federal agencies in addressing FAS and ARND (recommendations 9 and 10).

Ongoing challenges for the Task Force include developing strategies to enhance implementation of the recommendations in this report as well as others that will be released throughout the term of this chartered committee. Task Force meetings are held approximately twice a year and are open to the public. Meeting notices are published in the Federal Register. Further information regarding the Task Force and minutes of previous meetings can be accessed at http://www.cdc.gov/ncbddd/fas/taskforce.htm.

References

1. CDC. Alcohol use among childbearing-age women---United States, 1991--1999. MMWR 2002;51:273--6.
2. CDC. Fetal alcohol syndrome---Alaska, Arizona, Colorado, and New York, 1995--1997. MMWR 2002;51:433--5.
3. CDC. Surveillance for fetal alcohol syndrome using multiple sources---Atlanta, Georgia, 1981--1989. MMWR 1997;46:1118--20.
4. CDC. Update: trends in fetal alcohol syndrome---United States, 1979--1993. MMWR 1995;44:249--51.
5. Jones KL, Smith DW. Recognition of the fetal alcohol syndrome in early infancy. Lancet 1973;2:999--1001.
6. Shalala, DE. Charter: National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect. Rockville, MD: US Department of Health and Human Services, Office of the Secretary, 2000:1--3.
7. Committee To Study Fetal Alcohol Syndrome, Division of Biobehavioral Sciences and Mental Disorders, Institute of Medicine. Fetal alcohol syndrome: diagnosis, epidemiology, prevention, and treatment. Stratton K, Howe C, Battaglia F, eds. Washington, DC: National Academy Press, 1996.
8. Sampson PD, Streissguth AP, Bookstein FL, et al. Incidence of fetal alcohol syndrome and prevalence of alcohol-related neurodevelopmental disorder. Teratology 1997;56:317--26.

National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect
August 2002

Chair: Edward P. Riley, Ph.D., San Diego State University, San Diego, California.
Executive Secretary: Dixie E. Snider, Jr., M.D., Office of the Director, CDC, Atlanta, Georgia.
Standing Member: Faye J. Calhoun, D.P.A., National Institutes of Health, Bethesda, Maryland; Chair of the Interagency Coordinating Committee on Fetal Alcohol Syndrome, U.S. Department of Health and Human Services.
Members: Michael E. Charness, M.D., Harvard Medical School, West Roxbury, Massachusetts; Claire D. Coles, Ph.D., Emory University School of Medicine, Atlanta, Georgia; Nancy L. Day, Ph.D., University of Pittsburgh, Pittsburgh, Pennsylvania; C. Jocie DeVries, FAS Family Resource Institute, Lynnwood, Washington; Fred W. Garcia, Washington State Division of Alcohol and Substance Abuse, Olympia, Washington; Theresa M. Maresca, M.D., Seattle Indian Health Board, Seattle, Washington; Kathleen Tavenner Mitchell, National Organization on Fetal Alcohol Syndrome, Washington, D.C.; Luther Knox Robinson, M.D., State University of New York at Buffalo, Buffalo, New York; Charles M. Schad, Ed.D., Educator (retired), Spearfish, South Dakota.
Special Consultant: Deborah E. Cohen, Ph.D., New Jersey Office for Prevention of Mental Retardation and Developmental Disabilities, Trenton, New Jersey.
CDC Staff Support: R. Louise Floyd, D.S.N., Jacqueline Vowell, Connie Granoff, and Mary Kate Weber, M.P.H., Center on Birth Defects and Developmental Disabilities, CDC, Atlanta, Georgia.

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