[Congressional Record Volume 154, Number 151 (Tuesday, September 23, 2008)]
[Senate]
[Pages S9341-S9343]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




     PRENATALLY AND POSTNATALLY DIAGNOSED CONDITIONS AWARENESS ACT

  Mr. MENENDEZ. Mr. President, I ask unanimous consent that the Senate 
proceed to the immediate consideration of Calendar No. 701, S. 1810.
  The PRESIDING OFFICER. The clerk will report the bill by title.
  The legislative clerk read as follows:

       A bill (S. 1810) 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.

  There being no objection, the Senate proceeded to consider the bill, 
which had been reported from the Committee on Health, Education, Labor 
and Pensions with an amendment to strike all after the enacting clause 
and insert in lieu thereof the following:

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Prenatally and Postnatally 
     Diagnosed Conditions Awareness Act''.

[[Page S9342]]

     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.
       ``(e) Authorization of Appropriations.--There is authorized 
     to be appropriated to carry out this section, $5,000,000 for 
     each of fiscal years 2008 through 2012.''.
  Mr. MENENDEZ. Mr. President, I ask unanimous consent that the 
amendment at the desk be agreed to; the committee-reported amendment, 
as amended, be agreed to; the bill, as amended, be read three times and 
passed; the motions to reconsider be laid upon the table; and that any 
statements be printed in the Record.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The amendment (No. 5640) was agreed to, as follows:

                (Purpose: In the nature of a substitute)

       In lieu of the matter proposed to be inserted, insert the 
     following:

     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

[[Page S9343]]

       ``(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.''.

  The committee amendment in the nature of a substitute, as amended, 
was agreed to.
  The bill (S. 1810), as amended, was ordered to be engrossed for a 
third reading, was read the third time, and passed.

                          ____________________