109th Congress

Advancing FASD Research, Prevention, and Services Act

S. 1722/H.R. 4212

Background

Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral, and learning disabilities with possible lifelong implications. The term FASD is not intended for use as a clinical diagnosis; it refers to conditions such as fetal alcohol syndrome (FAS), fetal alcohol effects, alcohol-related neurodevelopmental disorder, and alcohol-related birth defects.

It is estimated that 13 percent of women continue to drink alcohol throughout their pregnancies, contributing to the birth of 40,000 infants with FASD annually. Prenatal alcohol exposure is also the leading and most easily preventable cause of mental retardation. The lifetime cost of treating a child with FAS is estimated to be $860,000, totaling nationwide to approximately $5.4 billion annually. These costs include the greater need for special education, rehabilitation, and even incarceration.

The language in this legislation was originally introduced by former Senator Thomas A. Daschle (D-SD) in the 108th Congress as the Fetal Alcohol Syndrome and Fetal Alcohol Prevention and Services Act. Senators Lisa Murkowski (R-AK) and Tim Johnson (D-SD) reintroduced the bill in the 109th Congress as S. 1722, the Advancing FASD Research, Prevention, and Services Act. Representative Frank Pallone, Jr. (D-NJ) introduced H.R. 4212, the companion bill.

The legislation would have increased the focus on efforts to identify individuals with FASD through advances in brain-imaging techniques, development of pharmaceutical treatments, and isolation of genetic markers for the disorder. The legislation would have required the dissemination of information about best practices to facilities that treat children and adults with FASD, including community health centers, juvenile justice centers, and special education programs. It would have also authorized grants to State, tribal, and local organizations to develop better methods of treatment and curriculums to educate young people about the dangers of drinking during pregnancy.

The legislation included provisions on FASD prevention, identification, treatment, and care and pertained to two National Institutes of Health (NIH) Institutes, the National Institute on Alcohol Abuse and Alcoholism (NIAAA) and National Institute of Mental Health (NIMH), as well as the U.S. Department of Education, U.S. Department of Justice, Centers for Disease Control and Prevention (CDC), Substance Abuse and Mental Health Services Administration, and other Federal agencies.

Provisions of the Legislation/Impact on NIH

Section 399H(a)(1) would have required the Secretary of Health and Human Services, acting through the Director of NIH, to establish a research agenda for FASD and award grants, contracts, and cooperative agreements to public or private nonprofit entities to fund all or part of the research resulting from this agenda.

Section 399H(a)(2) would have directed NIAAA to:

• Conduct national and international research in coordination with other Federal agencies that includes the identification of mechanisms that produce the cognitive and behavioral problems associated with fetal alcohol exposure
• Develop a neurocognitive phenotype for FAS and alcohol-related neurodevelopmental disorder
• Identify biological markers that could be used to indicate fetal alcohol exposure
• Identify fetal and maternal risk factors that increase susceptibility to FASD
• Investigate behavioral interventions and pharmacotherapies for alcohol-dependent women in order to develop new approaches for sustaining recovery
• Develop scientifically based therapeutic interventions for individuals with FASD
• Develop screening instruments to identify women who drink alcohol during pregnancy
• Develop standards for measuring, reporting, and analyzing alcohol consumption patterns among pregnant women

Section 399H(a)(3) would have required NIMH to:

• Conduct a study on the behavioral disorders that may be associated with prenatal alcohol exposure
• Submit to Congress a report on the appropriateness of characterizing FASD and secondary behavioral disorders as mental health disorders
• Conduct additional research on the epidemiology of behavior disorders associated with FASD in collaboration with CDC

The legislation contained several other directives that would not have directly affected NIH, including a requirement that the National Task Force on FASD identify and report on the 10 most important actions that should be taken to reduce prenatal alcohol exposure and its adverse outcomes, promote current epidemiological information and innovative prevention models, and review short- and long-term recommendations for achieving the Healthy People 2010 objectives for the Nation related to FASD. It would have also required a recommendation on whether FAS and other prenatal alcohol disorders should be included in the Diagnostic and Statistical Manual of Mental Disorders.

Status and Outlook

S. 1722 was introduced by Senator Murkowski on September 19, 2005, and was referred to the Senate Committee on Health, Education, Labor and Pensions. On September 19, the bill was reported out favorably by the Committee without amendment. No further action occurred on this legislation during the 109th Congress.

H.R. 4212 was introduced by Representative Pallone on November 2, 2005, and was referred to the House Energy and Commerce Subcommittee on Health. On November 22, the bill was reported out favorably by the Committee without amendment. On March 27, 2006, the bill was referred to the House Education and the Workforce Subcommittee on Select Education. No further action occurred on this legislation during the 109th Congress.