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National Organization on Fetal Alcohol Syndrome (NOFAS)
Submits Testimony in Support of Reauthorization of the Native American Healthcare Improvement Act
October 17, 2003
I would like to submit this testimony to the record on behalf of NOFAS, the National Organization on Fetal Alcohol Syndrome.
NOFAS was founded nearly 14 years ago to serve as a fetal alcohol syndrome (FAS) clearinghouse, striving to disseminate and communicate the available information and tools to professionals, families, and the public at large. At first, the founder and first executive director, Patti Munter, had a distinct interest in addressing FAS among American Indian communities. Since 1990, despite limited resources, NOFAS has expanded its programming to include innovative public awareness and education strategies for all groups of people.
FAS is a very widespread concern for native groups throughout the United States. HR 2440 contains a section targeting FAS prevention, Section 711, and mandates forming a task force to address it as one of the most pressing health concerns among all of the justifications for the bill. We at NOFAS heartily support the initiative as a badly needed boon to the efforts already underway in tribal areas across the Nation. This testimony will highlight the problem of FAS in general, and specifically among American Indian groups, where the rates are higher than in the general population. As an advocacy and programmatic organization, it is in the best interests of our board, staff, and constituents to make sure congressional efforts are made to combat this terrible disease.
The following summary is excerpted from the 10th Special Report to the U.S. Congress on Alcohol and Health produced by the National Institute on Alcohol Abuse and Alcoholism (NIAAA). The passage further describes FAS and the issues related to prenatal alcohol exposure and serves as an introduction to the report's comprehensive chapter on the subject.
FAS is a set of birth defects caused by maternal alcohol use during pregnancy. At birth, children with FAS can be recognized by stunted growth and a certain set of minor facial traits that tend to become more normal as the child matures. Less evident at birth-but far more harmful to FAS children and their families-are the lifelong effects of alcohol-induced damage to the growing brain.
FAS is thought to be the most common nonhereditary cause of mental retardation. Along with problems in general intellect, people with FAS often have problems with learning, memory, attention, and problem solving as well as problems with mental health and social interactions. Thus, FAS people and their families face constant hardships in almost every aspect of life.
Estimates of how common FAS is vary from 0.5 to 3 per 1,000 live births in most populations, with much higher rates in some communities (Stratton et al. 1996). However, the diagnosis of FAS identifies only a relatively small number of children affected by alcohol exposure before birth. Children with severe prenatal alcohol exposure can lack the facial defects and stunted growth of FAS but still have alcohol-induced mental problems that are just as serious, if not more so, than in children with FAS. The term "alcohol-related neurodevelopmental disorder" (ARND) has been developed to describe this condition. Also, prenatally exposed children without FAS facial features can have other alcohol-related physical defects of the skeleton and certain organ systems; these are known as alcohol-related birth defects (ARBD).
Because the effects of prenatal alcohol exposure on the growing brain appear to be especially long-lasting and harmful, much research has focused on brain malformations as well as cognitive and behavioral abnormalities. In this chapter, the section on "Prenatal Alcohol Exposure: Effects on Brain Structure and Function" describes research using neuro-imaging techniques to provide precise pictures of brain defects found in persons exposed to alcohol before birth. The studies strongly support the notion that alcohol has specific, rather than global, effects on the growing brain. The section also describes current research on the many behavioral signs of this brain damage, including problems with cognitive and motor functions as well as mental health and psychosocial behavior.
It is unlikely that a single mechanism can explain all of the harmful effects that result from alcohol exposure during pregnancy. As described in the section "Underlying Mechanisms of Alcohol-Induced Damage to the Fetus," alcohol affects the growing fetus through many actions at different sites. In the growing brain, for example, alcohol has been shown to interfere with the growth, function, migration, and survival of nerve cells. Also, in the embryonic cell layer that develops into the bones and cartilage of the head and face, alcohol exposure can cause early cell death, which is thought to be linked to the FAS facial defects. These actions of alcohol have provided scientists with many paths for finding possible biochemical mechanisms for these actions. Better understanding of the mechanisms may point to pharmacological approaches for intervening or for preventing alcohol-related fetal injury.
Although research in animals and humans is helping us learn more about alcohol-induced harm, not as much effort is being made to prevent these problems. The section "Issues in Fetal Alcohol Syndrome Prevention" notes that many strategies to prevent FAS have been used in recent years, but that these approaches have not been rigorously analyzed for effectiveness. The section summarizes major reviews of FAS prevention efforts, presents issues related to research methods and evaluations, and describes research on prevention approaches targeted to women at different levels of risk. Recent research shows a great need for effective prevention strategies. One study found that although alcohol use among pregnant women decreased between 1988 and 1992 (from 22.5 to 9.5 percent), by 1995 it had increased to 15.3 percent (Ebrahim et al. 1998). Moreover, binge drinking (defined in the study as five or more drinks at one time) among pregnant women, a particularly harmful drinking pattern in terms of FAS risk, increased a great deal between 1991 and 1995 (from 0.7 to 2.9 percent of pregnant women) (Ebrahim et al. 1999). In light of these unsettling findings, and because FAS and other adverse effects of drinking during pregnancy are completely preventable, the need for a solid research base to guide prevention program developers is critical.
According to government research, the rates of FAS for American Indians of the southwestern United States range from 13 to 103 per 10,000 live births. (U.S. Department of Health and Human Services. Report of the Secretary's Task Force on Black and Minority Health. Washington, DC: U.S. Department of Health and Human Services, 1985.)
The rates of FAS in American Indian groups vary greatly from one tribe to another. Several factors play a role in how often FAS occurs among American Indians, including drinking patterns, culture, fertility, nutrition, and metabolic differences. (Aase JM. The fetal alcohol syndrome in American Indians: a high-risk group. Neurobehavioral Toxicol Teratol 1981;3:153-6.)
According to studies conducted for the Centers for Disease Control and Prevention (CDC), incidences of FAS per 10,000 total births for different ethnic groups were as follows: Asians-0.3, Hispanics-0.8, Whites-0.9, Blacks-6.0, and American Indians-29.9. (Chavez, G.F.; Cordero, J.F.; and Becerra, J.E. Leading major congenital malformations among minority groups in the United States, 1981-1986. Journal of the American Medical Association 261(2):205-209, 1989.)
Reports from health units that serve Navajo and Pueblo tribes show that the prevalence of FAS is similar to that of the general population in the United States, but the prevalence reported among the Southwest Plains Indians was much higher (1 per 102 live births). (May, P.A.; Hymbaugh, K.J.; Aase, J.M.; and Samet, J.M. Epidemiology of fetal alcohol syndrome among American Indians of the Southwest. Social Biology 30(4):374-387, 1983.)
It is well-known that FAS is thought to be the leading known preventable cause of mental retardation in the United States. While FAS is a national problem, minorities, particularly American Indian and Alaska Native communities, report higher rates of alcohol use during pregnancy than other racial/ethnic groups in the United States.
In response to this staggering epidemic, NOFAS is interested in developing culturally appropriate community-based public health awareness and education initiatives to decrease the number of American Indians who report alcohol use during pregnancy. As such, to inform programmatic planning and increase the effectiveness of the proposed prevention activities, NOFAS will convene a round-table discussion of prevention researchers, members of the American Indian community, and FAS experts during December 2003. This concerns a series of prototype peer-maintained programs that NOFAS will coordinate in three distinct tribal communities over the next several years. While this effort is independent of efforts of other Federal agencies on FAS, we look forward to working together with all interested parties in the prevention and treatment of FAS among American Indian communities.
Parts of this testimony were referenced from:
Ebrahim, S.H.; Diekman, S.T.; Floyd, L.; and
Decoufle, P. Comparison of binge drinking
among pregnant and nonpregnant women,
United States, 1991-1995. Am J Obstet Gynecol
180(1 pt. 1):1-7, 1999.
Ebrahim, S.H.; Luman, E.T.; Floyd, R.L.;
Murphy, C.C.; Bennett, E.M.; and Boyle, C.A.
Alcohol consumption by pregnant women in the
United States during 1988-1995. Obstet Gynecol
92(2):187-192, 1998.
Stratton, K.; Howe, C.; and Battaglia, F., eds.
Fetal Alcohol Syndrome: Diagnosis, Epidemiology,
Prevention, and Treatment. Washington, DC:
National Academy Press, 1996.
FAS Community Resource Center at
www.come-over.to/FAS/NAFAS.htm
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