Washington, DC—U.S. Senators Tim Johnson (D-SD), Lisa Murkowski (R-AK), and Mark Begich (D-AK) today reintroduced the Advancing FASD Research, Prevention, and Services Act to improve research, prevention, and services for Fetal Alcohol Spectrum Disorders (FASD). FASD is an umbrella term that describes a range of physical and mental birth defects that can occur in a fetus when a pregnant woman drinks alcohol. Alcohol exposure during pregnancy is a leading cause of non-hereditary cognitive disability.
“This devastating disease is entirely preventable, and yet it continues to impact our communities,” said Johnson. “The bill we reintroduced today seeks a balance between directing federal resources to prevention and research activities and services for individuals living with FASD and their families.”
The legislation contains provisions to require the National Institutes of Health to develop a research agenda, improve FASD screening and prevention programs and facilitate the development of statewide systems and community partnerships. The bill would provide federal grants for pilot projects to determine and implement the best practices for educating children with FASD within the school system, as well as educating professionals about services for children. Funding would also be made available to improve services for individuals with FASD who are incarcerated or otherwise involved in the justice system.
Federal grants would also be made available to states, tribes, tribal organizations and other non-profit organizations to develop support services such as vocational training, housing assistance and mental health services for adults with the disease. The bill authorizes $27 million in funding for all of these programs for fiscal years 2014 through 2018.
People affected with these disorders face numerous medical, physical, educational, and financial challenges. Difficulties can include severe learning disabilities, physical abnormalities, costly medical bills and behavioral impairments. Diagnoses under FASD include Fetal Alcohol Syndrome, Alcohol-Related Birth Defects and Alcohol-Related Neurodevelopmental Disorder.
From South Dakota FASD advocates:
“The spectrum of disabilities caused by prenatal alcohol exposure is one of the greatest prenatal public health problems facing the United States today, with as many as 1 in 100 American children adversely affected by maternal drinking in pregnancy,” said Dr. Gene Hoyme, chief academic officer of Sanford Health and recipient of the 2012 National Organization on Fetal Alcohol Syndrome Excellence Award. “The legislation proposed by Senator Johnson is groundbreaking in many ways, since it addresses all aspects of the problem: case definition, systems development, surveillance, research, treatment of affected children and prevention. As a health professional whose career has been devoted to FASD, I welcome the opportunities this bill promises for our most precious resource, South Dakota’s children.”
“This is an important piece of legislation for addressing the leading known preventable cause of intellectual disabilities and birth defects in the U.S.,” said Wendy Parent-Johnson, Ph.D., Executive Director of the USD Center for Disabilities. “The comprehensive nature of this act creates an opportunity to not only help thousands of families and individuals affected by FASD, but also to significantly impact critical efforts in prevention and research.”