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108th CONGRESS
2d Session
S. 2741
To amend the Public Health Service Act to reauthorize and extend the
Fetal Alcohol Syndrome prevention and services program, and for other
purposes.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
July 22, 2004
Mr. Daschle introduced the following bill; which was read twice and
referred to the Committee on Health, Education, Labor, and Pensions
_______________________________________________________________________
A BILL
To amend the Public Health Service Act to reauthorize and extend the
Fetal Alcohol Syndrome prevention and services program, and for other
purposes.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Advancing FASD Research, Prevention,
and Services Act''.
SEC. 2. FINDINGS.
Congress makes the following findings:
(1) Fetal Alcohol Spectrum Disorders are the spectrum of
serious, life-long disorders caused by prenatal exposure to
alcohol, which include Fetal Alcohol Syndrome, Alcohol-Related
Neurodevelopmental Disorder, and Alcohol-Related Birth Defects.
(2) In the decades that have passed since Fetal Alcohol
Syndrome was first recognized in the United States, this fully
preventable condition has continued to affect American children
and families.
(3) Prenatal alcohol exposure can cause brain damage that
produces cognitive and behavioral impairments. Prenatal alcohol
exposure can cause mental retardation or low IQ and
difficulties with learning, memory, attention, and problem-
solving. It can also create problems with mental health and
social interactions.
(4) Prenatal alcohol exposure also can cause growth
retardation, birth defects involving the heart, kidney, vision
and hearing, and a characteristic pattern of facial
abnormalities.
(5) About 13 percent of women report using alcohol during
pregnancy even though there is no known safe level of alcohol
consumption during pregnancy.
(6) Estimates of individuals with Fetal Alcohol Syndrome
vary but are estimated to be between 0.5 and 2.0 per 1,000
births. The prevalence rate is considerably higher for all
Fetal Alcohol Spectrum Disorders: about 10 out of 1,000 births
(1 percent of births).
(7) Prevalence of Fetal Alcohol Spectrum Disorders can be
even higher in certain populations, such as Native Americans,
and in certain areas, such as those characterized by low
socioeconomic status.
(8) Fetal Alcohol Spectrum Disorders pose extraordinary
financial costs to the Nation, including the cost of
specialized health care, education, foster care, incarceration,
job training, and general support services for individuals
affected by Fetal Alcohol Spectrum Disorders.
(9) Lifetime health costs for an individual with Fetal
Alcohol Syndrome average $860,000, and can run as high as
$4,200,000. The direct and indirect economic costs of Fetal
Alcohol Syndrome in the United States were $5,400,000,000 in
2003. Total economic costs would be even higher for all Fetal
Alcohol Spectrum Disorders.
(10) There is a great need for research, surveillance,
prevention, treatment, and support services for individuals
with Fetal Alcohol Spectrum Disorders and their families.
SEC. 3. PROGRAMS FOR FETAL ALCOHOL SPECTRUM DISORDERS.
Section 399H of the Public Health Service Act (48 U.S.C. 280f) is
amended--
(1) by striking the section heading and inserting the
following:
``SEC. 399H. PROGRAMS FOR FETAL ALCOHOL SPECTRUM DISORDERS.'';
(2) by redesignating subsections (a) through (d) as
subsections (h) through (k), respectively;
(3) by inserting after the section heading, the following:
``(a) Research on FAS and Related Disorders.--
``(1) In general.--The Secretary, acting through the
Director of the National Institutes of Health and in
coordination with the Interagency Coordinating Committee on
Fetal Alcohol Syndrome, shall--
``(A) establish a research agenda for Fetal Alcohol
Spectrum Disorders; and
``(B) award grants, contracts, or cooperative
agreements to public or private nonprofit entities to
pay all or part of carrying out research under such
agenda.
``(2) Types of research.--In carrying out paragraph (1),
the Secretary, acting through the Director of the National
Institute of Alcohol Abuse and Alcoholism, shall conduct
national and international research in coordination with other
Federal agencies that includes--
``(A) the identification of the mechanisms that
produce the cognitive and behavioral problems
associated with fetal alcohol exposure;
``(B) the development of a neurocognitive phenotype
for Fetal Alcohol Syndrome and Alcohol-Related
Neurodevelopmental Disorder;
``(C) the identification of biological markers that
can be used to indicate fetal alcohol exposure;
``(D) the identification of fetal and maternal risk
factors that increase susceptibility to Fetal Alcohol
Spectrum Disorders;
``(E) the investigation of behavioral and
pharmacotherapies for alcohol-dependent women to
determine new approaches for sustaining recovery;
``(F) the development of scientific-based
therapeutic interventions for individuals with Fetal
Alcohol Spectrum Disorders;
``(G) the development of screening instruments to
identify women who consume alcohol during pregnancy and
the development of standards for measuring, reporting,
and analyzing alcohol consumption patterns in pregnant
women; and
``(H) other research that the Director determines
to be appropriate.
``(3) Study.--The Secretary, acting through the Director of
the National Institute of Mental Health, shall--
``(A) conduct a study on the behavioral disorders
that may be associated with prenatal alcohol exposure;
``(B) not later than 1 year after the date of
enactment of the Advancing FASD Research, Prevention,
and Services Act, submit to Congress a report on the
appropriateness of characterizing Fetal Alcohol
Spectrum Disorders and their secondary behavioral
disorders as mental health disorders; and
``(C) conduct additional research on the
epidemiology of behavior disorders associated with
Fetal Alcohol Spectrum Disorders in collaboration with
the Centers for Disease Control and Prevention.
``(4) Authorization of appropriations.--There are
authorized to be appropriated to carry out this subsection,
such sums as may be necessary for each of fiscal years 2005
through 2009.
``(b) Surveillance, Identification, and Prevention Activities.--
``(1) In general.--The Secretary, acting through the
Director of the National Center on Birth Defects and
Developmental Disabilities, shall facilitate surveillance,
identification, and prevention of Fetal Alcohol Spectrum
Disorders as provided for in this subsection.
``(2) Surveillance, identification, and prevention.--In
carrying out this subsection, the Secretary shall--
``(A) develop and implement a uniform surveillance
case definition for Fetal Alcohol Syndrome and a
uniform surveillance case definition for Alcohol
Related Neurodevelopmental Disorder;
``(B) develop a comprehensive screening process for
Fetal Alcohol Spectrum Disorders that covers different
age, race, and ethnic groups and is based on the
uniform surveillance case definitions developed under
subparagraph (A);
``(C) disseminate and provide the necessary
training and support for the screening process
developed under subparagraph (B) to--
``(i) hospitals, community health centers,
outpatient programs, and other appropriate
health care providers;
``(ii) incarceration and detainment
facilities;
``(iii) primary and secondary schools;
``(iv) social work and child welfare
offices;
``(v) foster care providers and adoption
agencies;
``(vi) State offices and others providing
services to individuals with disabilities; and
``(vii) other entities that the Secretary
determines to be appropriate;
``(D) conduct activities related to risk factor
surveillance including the annual monitoring and
reporting of alcohol consumption among pregnant women
and women of child bearing age; and
``(E) conduct applied public health prevention
research and implement strategies for reducing alcohol-
exposed pregnancies in women at high risk for alcohol-
exposed pregnancies.
``(3) Authorization of appropriation.--There are authorized
to be appropriated to carry out this subsection, such sums as
may be necessary for each of fiscal years 2005 through 2009.
``(c) Building State FASD Systems.--
``(1) In general.--The Secretary, acting through the
Administrator of the Substance Abuse and Mental Health Services
Administration, shall award grants, contracts, or cooperative
agreements to States for the purpose of establishing or
expanding statewide programs of surveillance, prevention, and
treatment of individuals with Fetal Alcohol Spectrum Disorders.
``(2) Eligibility.--To be eligible to receive a grant,
contract, or cooperative agreement under paragraph (1) a State
shall--
``(A) prepare and submit to the Secretary an
application at such time, in such manner, and
containing such information as the Secretary may
reasonably require;
``(B) develop and implement a statewide strategic
plan for preventing and treating Fetal Alcohol Spectrum
Disorders;
``(C) consult with public and private non-profit
entities with relevant expertise on Fetal Alcohol
Spectrum Disorders within the State, including--
``(i) parent-led groups and other
organizations that support and advocate for
individuals with Fetal Alcohol Spectrum
Disorders; and
``(ii) Indian tribes and tribal
organizations; and
``(D) designate an individual to serve as the
coordinator of the State's Fetal Alcohol Spectrum
Disorders program.
``(3) Strategic plan.--The statewide strategic plan
prepared under paragraph (2)(B) shall include--
``(A) the identification of existing State programs
and systems that could be used to identify and treat
individuals with Fetal Alcohol Spectrum Disorders and
prevent alcohol consumption during pregnancy, such as--
``(i) programs for the developmentally
disabled, the mentally ill, and individuals
with alcohol dependency;
``(ii) primary and secondary educational
systems;
``(iii) judicial systems for juveniles and
adults;
``(iv) child welfare programs and social
service programs; and
``(v) other programs or systems the State
determines to be appropriate;
``(B) the identification of any barriers for
individuals with Fetal Alcohol Spectrum Disorders or
women at risk for alcohol consumption during pregnancy
to access the programs identified under subparagraph
(A); and
``(C) proposals to eliminate barriers to prevention
and treatment programs and coordinate the activities of
such programs.
``(4) Use of funds.--Amounts received under a grant,
contract, or cooperative agreement under paragraph (1) shall be
used for one or more of the following activities:
``(A) Establishing a statewide surveillance system.
``(B) Collecting, analyzing and interpreting data.
``(C) Establishing a diagnostic center.
``(D) Developing, implementing, and evaluating
population-based and targeted prevention programs for
Fetal Alcohol Spectrum Disorders, including public
awareness campaigns.
``(E) Referring individuals with Fetal Alcohol
Spectrum Disorders to appropriate support services.
``(F) Developing and sharing best practices for the
prevention, identification, and treatment of Fetal
Alcohol Spectrum Disorders.
``(G) Providing training to health care providers
on the prevention, identification, and treatment of
Fetal Alcohol Spectrum Disorders.
``(H) Disseminating information about Fetal Alcohol
Spectrum Disorders and the availability of support
services to families of individuals with Fetal Alcohol
Spectrum Disorders.
``(I) Other activities determined appropriate by
the Secretary.
``(5) Multi-state programs.--The Secretary shall permit the
formation of multi-State Fetal Alcohol Spectrum Disorders
programs under this subsection.
``(6) Other contracts and agreements.--A State may carry
out activities under paragraph (4) through contacts or
cooperative agreements with public and private non-profit
entities with a demonstrated expertise in Fetal Alcohol
Spectrum Disorders.
``(7) Authorization of appropriations.--There are
authorized to be appropriated to carry out this subsection,
such sums as may be necessary for fiscal years 2005 through
2009.
``(d) Promoting Community Partnerships.--
``(1) In general.--The Secretary shall award grants,
contracts, or cooperative agreements to eligible entities to
enable such entities to establish, enhance, or improve
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