[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.