Legislative Updates: http://olpa.od.nih.gov/legislation/109/pendinglegislation/advancFASD.asp

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 the Advancing FASD Research, Prevention, and Services Act. Representative Frank Pallone, Jr. (D-NJ) introduced H.R. 4212, its companion bill.

The new legislation would increase 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 require 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 also authorize 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 includes provisions on FASD prevention, identification, treatment, and care and pertains 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 require 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 direct NIAAA to:

Section 399H(a)(3) would require NIMH to:

The legislation contains several other directives that do not directly affect 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-term and long-term recommendations for achieving the Healthy People 2010 objectives for the Nation related to FASD. It would also require 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. On September 8, 2006, introductory remarks were made to the senate regarding FASD Awareness Day: http://thomas.loc.gov/cgi-bin/query/D?r109:1:./temp/~r109lAPhbF::

No further action has occurred on this legislation.

Full text: http://thomas.loc.gov/cgi-bin/query/C?c109:./temp/~c109lvP4k0

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 Subcommittee on Select Education.  No further action has occurred on this legislation.

Full text: http://thomas.loc.gov/cgi-bin/query/z?c109:H.R.4212:

Senate Cosponsors:

http://thomas.loc.gov/cgi-bin/bdquery/z?d109:SN01722:@@@P

Sen Boxer, Barbara [CA] - 6/5/2006 Sen Burns, Conrad R. [MT] - 4/27/2006
Sen Coleman, Norm [MN] - 9/19/2005 Sen Dayton, Mark [MN] - 6/7/2006
Sen Dodd, Christopher J. [CT] - 9/19/2005 Sen Durbin, Richard [IL] - 9/19/2005
Sen Johnson, Tim [SD] - 9/19/2005 Sen Landrieu, Mary L. [LA] - 4/27/2006
Sen Murray, Patty [WA] - 9/19/2005 Sen Stabenow, Debbie [MI] - 7/10/2006
 

If your senator is listed above, write a letter of appreciation.

If your senator is not listed above, write a letter requesting support of this legislation.  

House Cosponsors: http://thomas.loc.gov/cgi-bin/bdquery/z?d109:HR04212:@@@P

 

Rep Davis, Danny K. [IL-7] - 7/25/2006 Rep Fattah, Chaka [PA-2] - 12/6/2005
Rep Herseth, Stephanie [SD] - 11/18/2005 Rep Honda, Michael M. [CA-15] - 12/6/2005
Rep Inslee, Jay [WA-1] - 6/8/2006 Rep Jefferson, William J. [LA-2] - 4/26/2006
Rep Kaptur, Marcy [OH-9] - 6/20/2006 Rep McCollum, Betty [MN-4] - 9/13/2006
Rep McDermott, Jim [WA-7] - 6/8/2006 Rep McKinney, Cynthia A. [GA-4] - 12/8/2005
Rep McNulty, Michael R. [NY-21] - 12/6/2005 Rep Oberstar, James L. [MN-8] - 7/20/2006
Rep Payne, Donald M. [NJ-10] - 11/18/2005 Rep Ramstad, Jim [MN-3] - 11/2/2005
Rep Van Hollen, Chris [MD-8] - 6/8/2006 Rep Young, C. W. Bill [FL-10] - 4/6/2006
Rep Young, Don [AK] - 6/13/2006

If your representative is listed above, write a letter of appreciation.

If your representative is not listed above, write a letter requesting support of this legislation.  

 

 

How to write your letter:

Contact your US Senator:

http://www.senate.gov/general/contact_information/senators_cfm.cfm

 

The Honorable _____________ (full name)

United States Senate

Washington, D.C. 20510

 

Dear Senator [last name]:

 

I urge you to support S 1722...

Contact your US Representative:

http://www.house.gov/writerep/

 

The Honorable _____________ (full name)

U.S. House of Representatives

Washington, D.C. 20515

 

Dear Representative [last name]:

 

I urge you to support HR 4212...

Refer to the bill by number.  Ask them to support the bill (or thank them for sponsoring the bill).  Give a reason.  Make it personal.  Include a specific example of how it will impact your family personally.  Include a photo of your child/spouse with FASD.  If you cannot get a diagnosis or cannot get services, explain why.  Keep it to one page if possible.  Emphasize the important of one or all of the last three bullets listed above.

Close it with "Sincerely Yours" and your full name and mailing address.

This might be one of the most important letters you ever write.  It could make a difference in the life of your child/spouse with FASD.  Do it today!

NOFAS Action Alert: http://capwiz.com/nofas/issues/alert/?alertid=6804721&type=CO

One Mother's Letter to Her Governor: http://www.come-over.to/FAS/lettertogov.htm


Last Update: November 10, 2006

FAS Community Resource Center