[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[S. 1810 Engrossed in Senate (ES)]
110th CONGRESS
2d Session
S. 1810
_______________________________________________________________________
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.''.
Passed the Senate September 23 (legislative day, September
17), 2008.
Attest:
Secretary.
110th CONGRESS
2d Session
S. 1810
_______________________________________________________________________
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.