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McCollum, Young, Murkowski, Klobuchar Introduce FASD Research, Services, and Prevention Bill

June 25, 2021
Press Release
H.R. 4151 Addresses Enduring Public Health Issue

Representatives Betty McCollum (D-MN) and Don Young (R-AK) and U.S. Senators Lisa Murkowski (R-AK) and Amy Klobuchar (D-MN) introduced bipartisan, bicameral legislation, the Advancing FASD Research, Services, and Prevention Act of 2021 (FASD Respect Act). The bill addresses prenatal substance exposure through early intervention—by providing support through programs and funding for prevention efforts and for individuals and families affected by Fetal Alcohol Spectrum Disorders (FASD). FASDs include Fetal Alcohol Syndrome (FAS), partial Fetal Alcohol Syndrome (FAS), Alcohol Related Neurodevelopmental Disorder (ARND), Neurobehavioral Disorders Associated with Prenatal Alcohol Exposure (ND-PAE), and related conditions. Representatives Don Young (R-AK) and Betty McCollum (D-MN) introduced companion legislation in the House of Representatives.

The FASD Respect Act recognizes the need to have a comprehensive approach to all prenatal substance and prenatal alcohol exposures as they are a significant health concern to our nation’s children and families. According to the National Vital Statistics, around 18 percent of infants are potentially affected by prenatal exposure to alcohol, binge drinking, or illicit drugs each year. This legislation aims to develop a more collaborative approach across state, tribal and federal governments to support the medical, substance use, child welfare, and educational issues that the mother, infant and family face after being diagnosed with FAS, FASD, or a related condition. Specifically, the bill would create a National Advisory Council on FASD to combat FASD as well as reestablish the Center of Excellence on FASD and related conditions.

For the full text of the bill, click here.

For a one pager on the bill, click here.

“FASD impacts an alarmingly high percentage of children and adults in the U.S., and research and investments in FASD have been historically under recognized. This problem has only been further exacerbated by the COVID-19 pandemic,” said Congresswoman McCollum. “This legislation charts a comprehensive path to address this health issue on a nationwide scale, and I look forward to working with my colleagues on both sides of the aisle to advance this bill.”

“Too many families in Alaska and across our nation have been affected by FASD, and we should be doing all that we can to raise awareness of the many ways to prevent this tragic condition,” Congressman Young said. “I am proud to support the FASD Respect Act, which takes important steps to help inform pregnant mothers and prevent the development of FASD and its related effects. Additionally, this bill will create a National Advisory Council on FASD to help fight FASD for years to come. By crafting smart policies that can prevent prenatal substance abuse, we can help our nation’s children live healthy and successful lives. I thank my colleagues in the House and Senate – and on both sides of the aisle – for helping to support families through this crucial legislation.”

“Unfortunately, FASD rates in Alaska are among the highest in the United States. It’s a heartbreaking reality, but the effects of prenatal exposure to alcohol and other substances can have a long-standing and devastating impact on children, their families, and communities as a whole. The infants—which have been exposed to prenatal substance abuse but do not receive the appropriate treatment and developmental support—are at high risk of ongoing mental, emotional, and even physical challenges,” said Senator Murkowski. “While the physical, mental, and behavioral impacts of FASD are incurable, we can push for policy initiatives to prevent it in the first place. That’s why this legislation works to improve research, raise awareness, and plus-up resources to help protect future Alaskans from this heartbreaking reality. Since the 109th Congress, I have led on FASD legislation, and I’m not going to give up. By supporting families, and mothers, early on, we’re giving their babies a fighting chance.”

“During my time as a prosecutor, I saw firsthand the devastating long-term effects of prenatal exposure to alcohol and other substances,” said Senator Klobuchar. “We must ensure communities have resources to help struggling families and increase awareness about Fetal Alcohol Spectrum Disorders in an effort to prevent it. This legislation will do just that.”

“For too long children and adults with FASD have been without proper recognition or access to the adequate and appropriate services they deserve. The Advancing FASD Research, Services, and Prevention Act is for them and will change their lives. NOFAS is thrilled to see a bill that will allow States and Tribes to put in place desperately needed resources. Lisa Murkowski, Amy Klobuchar, Betty McCollum, and Don Young are beacons for families touched by prenatal alcohol exposure. The FASD community is ready to work with them to enact this legislation and once and for all replace the despair and stigma associated with FASD with fulfilled expectations and dignity.” -Tom Donaldson, National Organization on Fetal Alcohol Syndrome (NOFAS) President

“The Advancing FASD Research, Services and Prevention Act recognizes that prenatal alcohol exposure affects everyone regardless of race, sex, culture, or geography. This legislation offers the State of Alaska an opportunity to continue to address this complex public health issue in partnership with local Tribes and communities and the Tribal Health care system to not only prevent long lasting adverse effects for individuals but importantly, to heal the long term historical and cultural traumas resulting from not recognizing this usually-invisible condition.” -Hope Finkelstein, Alaska State Health & Social Services, FASD Program Manager at the Office of Substance Misuse & Addiction Prevention

“Southcentral Foundation is pleased to see this important legislation being introduced at the federal level.  Fetal Alcohol Spectrum Disorders affects families and communities across the nation. This bill will provide research and prevention tools that will help in the prevention and treatment of FASD. I appreciate the work on this important issue.” -April Kyle, Southcentral Foundation Interim President/CEO

 

FASD Respect Act bill details:

  • Creates the “National Advisory Council on FASD” consisting of parents, advocates, professional organizations, and experts in the field. The Committee will submit recommendations to the Nation al Institute of Alcohol Abuse and Alcoholism and develop new recommendations for Congress pursuant to the 2009 National FAS Task Force “Call to Action.”
  • Directs the Secretary of the U.S. Department of Health and Human Services (HHS)— acting through the Director of the National Institutes of Health and in coordination with the Interagency Coordinating Committee on Fetal Alcohol Spectrum Disorders—to establish a research agenda for FASD, award grants, and enter into contracts and cooperative agreements with public or private nonprofit entities.
  • Creates a program at the Health Resources and Services Administration to build State and Tribal systems to identify, treat, and support individuals with FASD. Grants will support States and Tribes to develop or update strategic plans to establish or expand FASD-informed clinical services and integrate them into existing systems of care.
  • Directs HHS to establish a Center of Excellence to build local, state, tribal and national capacities to prevent the occurrence of FASD—including disorders and birth defects related to combined abuse of alcohol and other substances. To establish the Center, HHS will award a grant or enter into a cooperative agreement or contract with a public or nonprofit entity with demonstrated expertise in promoting FASD awareness, prevention and intervention services.
  • Authorizes the Departments of Education and Justice to address FASD-related issues and provides funding for training of professionals on the recognition and support for those with FASD.

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