[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[S. 1810 Enrolled Bill (ENR)]
S.1810
One Hundred Tenth Congress
of the
United States of America
AT THE SECOND SESSION
Begun and held at the City of Washington on Thursday,
the third day of January, two thousand and eight
An Act
To amend the Public Health Service Act to increase the provision of
scientifically sound information and support services to patients
receiving a positive test diagnosis for Down syndrome or other
prenatally and postnatally diagnosed conditions.
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 ``Prenatally and Postnatally Diagnosed
Conditions Awareness Act''.
SEC. 2. PURPOSES.
It is the purpose of this Act to--
(1) increase patient referrals to providers of key support
services for women who have received a positive diagnosis for Down
syndrome, or other prenatally or postnatally diagnosed conditions,
as well as to provide up-to-date information on the range of
outcomes for individuals living with the diagnosed condition,
including physical, developmental, educational, and psychosocial
outcomes;
(2) strengthen existing networks of support through the Centers
for Disease Control and Prevention, the Health Resources and
Services Administration, and other patient and provider outreach
programs; and
(3) ensure that patients receive up-to-date, evidence-based
information about the accuracy of the test.
SEC. 3. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT.
Part P of title III of the Public Health Service Act (42 U.S.C.
280g et seq.) is amended by adding at the end the following:
``SEC. 399R. SUPPORT FOR PATIENTS RECEIVING A POSITIVE DIAGNOSIS OF
DOWN SYNDROME OR OTHER PRENATALLY OR POSTNATALLY DIAGNOSED CONDITIONS.
``(a) Definitions.--In this section:
``(1) Down syndrome.--The term `Down syndrome' refers to a
chromosomal disorder caused by an error in cell division that
results in the presence of an extra whole or partial copy of
chromosome 21.
``(2) Health care provider.--The term `health care provider'
means any person or entity required by State or Federal law or
regulation to be licensed, registered, or certified to provide
health care services, and who is so licensed, registered, or
certified.
``(3) Postnatally diagnosed condition.--The term `postnatally
diagnosed condition' means any health condition identified during
the 12-month period beginning at birth.
``(4) Prenatally diagnosed condition.--The term `prenatally
diagnosed condition' means any fetal health condition identified by
prenatal genetic testing or prenatal screening procedures.
``(5) Prenatal test.--The term `prenatal test' means diagnostic
or screening tests offered to pregnant women seeking routine
prenatal care that are administered on a required or recommended
basis by a health care provider based on medical history, family
background, ethnic background, previous test results, or other risk
factors.
``(b) Information and Support Services.--
``(1) In general.--The Secretary, acting through the Director
of the National Institutes of Health, the Director of the Centers
for Disease Control and Prevention, or the Administrator of the
Health Resources and Services Administration, may authorize and
oversee certain activities, including the awarding of grants,
contracts or cooperative agreements to eligible entities, to--
``(A) collect, synthesize, and disseminate current
evidence-based information relating to Down syndrome or other
prenatally or postnatally diagnosed conditions; and
``(B) coordinate the provision of, and access to, new or
existing supportive services for patients receiving a positive
diagnosis for Down syndrome or other prenatally or postnatally
diagnosed conditions, including--
``(i) the establishment of a resource telephone hotline
accessible to patients receiving a positive test result or
to the parents of newly diagnosed infants with Down
syndrome and other diagnosed conditions;
``(ii) the expansion and further development of the
National Dissemination Center for Children with
Disabilities, so that such Center can more effectively
conduct outreach to new and expecting parents and provide
them with up-to-date information on the range of outcomes
for individuals living with the diagnosed condition,
including physical, developmental, educational, and
psychosocial outcomes;
``(iii) the expansion and further development of
national and local peer-support programs, so that such
programs can more effectively serve women who receive a
positive diagnosis for Down syndrome or other prenatal
conditions or parents of infants with a postnatally
diagnosed condition;
``(iv) the establishment of a national registry, or
network of local registries, of families willing to adopt
newborns with Down syndrome or other prenatally or
postnatally diagnosed conditions, and links to adoption
agencies willing to place babies with Down syndrome or
other prenatally or postnatally diagnosed conditions, with
families willing to adopt; and
``(v) the establishment of awareness and education
programs for health care providers who provide, interpret,
or inform parents of the results of prenatal tests for Down
syndrome or other prenatally or postnatally diagnosed
conditions, to patients, consistent with the purpose
described in section 2(b)(1) of the Prenatally and
Postnatally Diagnosed Conditions Awareness Act.
``(2) Eligible entity.--In this subsection, the term `eligible
entity' means--
``(A) a State or a political subdivision of a State;
``(B) a consortium of 2 or more States or political
subdivisions of States;
``(C) a territory;
``(D) a health facility or program operated by or pursuant
to a contract with or grant from the Indian Health Service; or
``(E) any other entity with appropriate expertise in
prenatally and postnatally diagnosed conditions (including
nationally recognized disability groups), as determined by the
Secretary.
``(3) Distribution.--In distributing funds under this
subsection, the Secretary shall place an emphasis on funding
partnerships between health care professional groups and disability
advocacy organizations.
``(c) Provision of Information to Providers.--
``(1) In general.--A grantee under this section shall make
available to health care providers of parents who receive a
prenatal or postnatal diagnosis the following:
``(A) Up-to-date, evidence-based, written information
concerning the range of outcomes for individuals living with
the diagnosed condition, including physical, developmental,
educational, and psychosocial outcomes.
``(B) Contact information regarding support services,
including information hotlines specific to Down syndrome or
other prenatally or postnatally diagnosed conditions, resource
centers or clearinghouses, national and local peer support
groups, and other education and support programs as described
in subsection (b)(2).
``(2) Informational requirements.--Information provided under
this subsection shall be--
``(A) culturally and linguistically appropriate as needed
by women receiving a positive prenatal diagnosis or the family
of infants receiving a postnatal diagnosis; and
``(B) approved by the Secretary.
``(d) Report.--Not later than 2 years after the date of enactment
of this section, the Government Accountability Office shall submit a
report to Congress concerning the effectiveness of current healthcare
and family support programs serving as resources for the families of
children with disabilities.''.
Speaker of the House of Representatives.
Vice President of the United States and
President of the Senate.