The Federal Response to FASD

As NOFAS has reported, FASD funding at the Substance Abuse and Mental Health Services Administration (SAMHSA), a federal agency within the Department of Health and Human Services, has been cut by nearly 90% for fiscal 2014, from $9.8 million in fiscal 2013 ($8.3 million after a mandatory sequester cut)  to $1 million. The funds have been used to support the FASD Center for Excellence administered by Northrop Grumman Information Systems.

The history of federal funding for FASD begins nearly 40 years ago and SAMHSA’s involvement goes back over a dozen years.

The one constant among federal agencies and FASD since the 1970’s is the National Institute on Alcohol Abuse and Alcoholism (NIAAA). NIAAA has supported FASD-related research continually for four decades and also oversees the Interagency Coordinating Committee on FASD (ICCFASD).

Attention to Fetal Alcohol Syndrome (FAS) (The term FASD was not universally adopted until 2004) grew into the 1980’s leading up to the Alcohol Beverage Labeling Act of 1988. Enacted the following year, the federal law required that (among other provisions) the labels of alcoholic beverages carry a government warning stating in part, “According to the Surgeon General, women should not drink alcoholic beverages during pregnancy because of the risk of birth defects.”

In December 1990, at the urging of Senator Tom Daschle, the Subcommittee on Social Security and Family Policy of the Committee on Finance of the U.S. Senate held a hearing on FAS. NOFAS, then in its first year, worked with the committee to identify witnesses and current Vice President and Spokesperson Kathy Mitchell was among those who testified.

In the years after the hearing both the Centers for Disease Control and Prevention (CDC) and Indian Health Service had limited and intermittent funding to address FAS. In the meantime, Senator Daschle and other Senators and Representatives including Lisa Murkowski, John Kasich (current Governor of Ohio) Bill Richardson (former Secretary of Energy and Governor of New Mexico), John Kerry (current Secretary of State and 2004 Democratic nominee for President), Ben Nighthorse Campbell, Dan Inouye, Tim Johnson, Mike Synar and many others worked to increase appropriations for FAS and introduce legislation.

In 1996, the ICCFASD, then know as the ICCFAS, was established at NIAAA and the NIAAA-funded report by the Institute of Medicine (IOM), Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment was published. Recommendations in the IOM study established diagnostic criteria for FAS and other alcohol-related effects and its recommendations informed FASD legislation.

In 1997 and 1998 NOFAS worked with Senator Daschle (at this time Senate Minority Leader and later Majority Leader) and his staff to craft a comprehensive FAS bill. Senate bill S.148, the Comprehensive Fetal Alcohol Syndrome Prevention Act eventually passed as part of the Health Professions Education Partnerships Act of 1998. The authorizing legislation called for a comprehensive program within the Department of Health and Human Services to help prevent FAS that included basic and applied epidemiologic research; national, state, and community-based public awareness, prevention, and education programs; improved surveillance; and the development of clinical interventions, among other provisions.

In 2000, Senator Daschle offered an amendment to the Fiscal 2001 Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act to fund the FAS bill. Senate Appropriations Committee Chairman Arlen Specter, who was recognized the evening before at the annual NOFAS Leadership Awards Benefit, supported the amendment and it was passed with only one no vote.

(The no vote was cast by Colorado Republican Wayne Allard. Two campaign ads were aired during Allard’s 2002 run for reelection criticizing him for voting against the FAS appropriation, although Allard was reelected.)

As a result of the appropriation, specific FAS funding line items were created at CDC and SAMHSA and every year through 2013 between $8-12 million was allocated to each agency for FASD, until the SAMHSA appropriation was slashed this year to $1 million.

Last year, Senate FASD champion Lisa Murkowski introduced the Advancing FASD Research, Prevention, and Services Act (S.237). There is not currently a companion bill in the House of Representatives and its passage is unlikely.

It is imperative that NOFAS and other FASD organizations and advocates communicate with Congress and federal agencies to justify and insist on attention and resources for the disorders.

In June, NOFAS will host its annual Capitol Hill advocacy day and next month will release an Action Alert describing legislative and policy priorities for the year. Follow the news in the NOFAS Weekly Roundup and on social media, and consider joining the Friends of NOFAS to stay up-to-date on FASD policy issues.