[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1222 Engrossed Amendment Senate (EAS)]

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                  In the Senate of the United States,

                                                     December 12, 2018.
    Resolved, That the bill from the House of Representatives (H.R. 
1222) entitled ``An Act to amend the Public Health Service Act to 
coordinate Federal congenital heart disease research efforts and to 
improve public education and awareness of congenital heart disease, and 
for other purposes.'', do pass with the following

                               AMENDMENT:

            Strike all after the enacting clause and insert the 
      following:

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Congenital Heart Futures 
Reauthorization Act of 2017''.

SEC. 2. NATIONAL CONGENITAL HEART DISEASE RESEARCH, SURVEILLANCE, AND 
              AWARENESS.

    Section 399V-2 of the Public Health Service Act (42 U.S.C. 280g-13) 
is amended to read as follows:

``SEC. 399V-2. NATIONAL CONGENITAL HEART DISEASE RESEARCH, 
              SURVEILLANCE, AND AWARENESS.

    ``(a) In General.--The Secretary shall, as appropriate--
            ``(1) enhance and expand research and data collection 
        efforts related to congenital heart disease, including to study 
        and track the epidemiology of congenital heart disease to 
        understand health outcomes for individuals with congenital 
        heart disease across all ages;
            ``(2) conduct activities to improve public awareness of, 
        and education related to, congenital heart disease, including 
        care of individuals with such disease; and
            ``(3) award grants to entities to undertake the activities 
        described in this section.
    ``(b) Activities.--
            ``(1) In general.--The Secretary shall carry out 
        activities, including, as appropriate, through a national 
        cohort study and a nationally-representative, population-based 
        surveillance system, to improve the understanding of the 
        epidemiology of congenital heart disease in all age groups, 
        with particular attention to--
                    ``(A) the incidence and prevalence of congenital 
                heart disease in the United States;
                    ``(B) causation and risk factors associated with, 
                and natural history of, congenital heart disease;
                    ``(C) health care utilization by individuals with 
                congenital heart disease;
                    ``(D) demographic factors associated with 
                congenital heart disease, such as age, race, ethnicity, 
                sex, and family history of individuals who are 
                diagnosed with the disease; and
                    ``(E) evidence-based practices related to care and 
                treatment for individuals with congenital heart 
                disease.
            ``(2) Permissible considerations.--In carrying out the 
        activities under this section, the Secretary may, as 
        appropriate--
                    ``(A) collect data on the health outcomes, 
                including behavioral and mental health outcomes, of a 
                diverse population of individuals of all ages with 
                congenital heart disease, such that analysis of the 
                outcomes will inform evidence-based practices for 
                individuals with congenital heart disease; and
                    ``(B) consider health disparities among individuals 
                with congenital heart disease, which may include the 
                consideration of prenatal exposures.
    ``(c) Awareness Campaign.--The Secretary may carry out awareness 
and educational activities related to congenital heart disease in 
individuals of all ages, which may include information for patients, 
family members, and health care providers, on topics such as the 
prevalence of such disease, the effect of such disease on individuals 
of all ages, and the importance of long-term, specialized care for 
individuals with such disease.
    ``(d) Public Access.--The Secretary shall ensure that, subject to 
subsection (e), information collected under this section is made 
available, as appropriate, to the public, including researchers.
    ``(e) Patient Privacy.--The Secretary shall ensure that the data 
and information collected under this section are made available in a 
manner that, at a minimum, protects personal privacy to the extent 
required by applicable Federal and State law.
    ``(f) Eligibility for Grants.--To be eligible to receive a grant 
under subsection (a)(3), an entity shall--
            ``(1) be a public or private nonprofit entity with 
        specialized experience in congenital heart disease; and
            ``(2) submit to the Secretary an application at such time, 
        in such manner, and containing such information as the 
        Secretary may require.
    ``(g) Authorization of Appropriations.--To carry out this section, 
there are authorized to be appropriated $10,000,000 for each of fiscal 
years 2020 through 2024.''.

SEC. 3. REPORT.

    Not later than 3 years after the date of enactment of the 
Congenital Heart Futures Reauthorization Act of 2017, the Secretary of 
Health and Human Services shall submit to the Committee on Health, 
Education, Labor, and Pensions of the Senate and the Committee on 
Energy and Commerce of the House of Representatives a report 
summarizing any activities carried out pursuant to section 399V-2 of 
the Public Health Service Act (as amended by section 2), including 
planned activities, and a summary of any research findings and ongoing 
research efforts, gaps, and areas of greatest need within the 
Department of Health and Human Services regarding congenital heart 
disease in patients of all ages.

            Attest:

                                                             Secretary.
115th CONGRESS

  2d Session

                               H.R. 1222

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                               AMENDMENT