|SARASOTA – Matching bills proposed by the U.S. Senate and House would fund public health prevention and research for Fetal Alcohol Spectrum Disorders, or FASD, across agencies within the U.S.
The Advancing FASD Research, Services, and Prevention Act, (S.B. 2238, H.R. 4151), known as the FASD ReSPect Act, is co-sponsored by Senators Lisa Murkowski (R-AK) and Amy Klobuchar (D-MN), Representatives Betty McCollum (D-MN) and Don Young (R-AK), all dedicated champions of maternal and child health and support for individuals living with disabilities and addiction. (FASD describes the range of lifelong physical, mental, and behavioral impairments that can occur in an individual prenatally exposed to alcohol.)
The Florida Center for Early Childhood, in Sarasota, Fla., manages the only FASD clinic in the state. The clinic is funded through the state to serve families at no charge but has a high volume of appointments as FASD affects as many as 1 in 20 school-age children in the U.S. and is more prevalent than autism, according to JAMA: The Journal of the American Medical Association.
“We have a year-long waiting list for our clinic,” said Dr. Kristie Skoglund, CEO of The Florida Center for Early Childhood. “Despite the pervasiveness of the disorder, its prenatal effects on babies are not as well-known as other substances of abuse and therefore resources are very limited.”
While the effects of other substances are often apparent directly after birth, the effects of alcohol are not as obvious. Alcohol consumption during pregnancy inhibits healthy brain development, but because many are unfamiliar with the disorder, FASD can go undiagnosed, or be misdiagnosed in early childhood when interventions are necessary.
Skoglund says the new legislation could help to raise awareness about the disorder and possibly expand the number of clinics across the U.S.
“When your child is struggling, waiting a year to access services can feel like an eternity,” said Skoglund. “In fact, the sooner a child is evaluated and diagnosed, the better the outcomes will be.”
Like autism, FASD is a spectrum disorder that can affect an individual their entire life. People living with FASD can be high-functioning or require full-time assistance. There is little research on what amount of alcohol causes FASD – damage can occur in any stage of pregnancy including the very early stages before a woman even knows she’s pregnant.
FASD author and advocate Lucas Boyce, who serves as assistant to the county administrator of Orange County Florida, said the legislation is a unique and rare opportunity to address urgent issues in a non-partisan manner.
“I believe the outcome of this trailblazing legislation in child health and support for those with FASD has the potential to become a movement and in the process save millions of lives for generations to come,” Boyce said. "As a citizen who has lived with the multiple disadvantages and impairments of FASD for the last 42 years, I plead with members of both houses of Congress to consider prioritizing The Advancing FASD Research, Services, and Prevention Act for immediate passage and prompt delivery to the president’s desk for his signature.”