Title: Congenital Heart Futures Reauthorization Act of 2017
Policy area: Health

Summary:
Congenital Heart Futures Reauthorization Act of 2017
This bill amends the Public Health Service Act to replace the authorization for a National Congenital Heart Disease Surveillance System with a requirement for the Department of Health and Human Services, regarding congenital heart disease, to enhance and expand research and surveillance infrastructure, and to plan and implement a public outreach and education campaign. (Congenital heart disease is a condition caused by a heart defect that is present at birth.)
The Centers for Disease Control and Prevention must conduct: (1) a study of congenital heart disease, from birth to adulthood, that considers health care utilization, demographic factors, and outcomes; and (2) an awareness, outreach, and education campaign regarding congenital heart disease. Data from the study must be made available to the public.
The National Heart, Lung, and Blood Institute must report on its ongoing research efforts regarding congenital heart disease, future plans for such research, and areas of greatest need for such research.

[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[S. 477 Introduced in Senate (IS)]

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115th CONGRESS
  1st Session
                                 S. 477

To amend the Public Health Service Act to coordinate Federal congenital 
 heart disease research and surveillance efforts and to improve public 
  education and awareness of congenital heart disease, and for other 
                               purposes.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           February 28, 2017

 Mr. Durbin (for himself and Mr. Casey) introduced the following bill; 
     which was read twice and referred to the Committee on Health, 
                     Education, Labor, and Pensions

_______________________________________________________________________

                                 A BILL


 
To amend the Public Health Service Act to coordinate Federal congenital 
 heart disease research and surveillance efforts and to improve public 
  education and awareness of congenital heart disease, and for other 
                               purposes.

    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 ``Congenital Heart Futures 
Reauthorization Act of 2017''.

SEC. 2. NATIONAL CONGENITAL HEART DISEASE COHORT STUDY, SURVEILLANCE, 
              AND AWARENESS CAMPAIGN.

    Section 399V-2 of the Public Health Service Act (42 U.S.C. 280g-13) 
is amended--
            (1) by amending the section heading to read as follows: 
        ``national congenital heart disease cohort study, surveillance 
        system, and awareness campaign'';
            (2) by amending subsection (a) to read as follows:
    ``(a) In General.--
            ``(1) Activities.--The Secretary shall--
                    ``(A) enhance and expand research and surveillance 
                infrastructure to study and track the epidemiology of 
                congenital heart disease (in this section referred to 
                as `CHD') across the lifespan; and
                    ``(B) plan and implement a public outreach and 
                education campaign regarding CHD across the lifespan.
            ``(2) Grants.--The Secretary may award grants to eligible 
        entities to carry out the activities described in subsections 
        (b), (c), and (d).'';
            (3) in subsection (b)--
                    (A) in the heading, by striking ``Purpose'' and 
                inserting ``National Congenital Heart Disease 
                Surveillance System''; and
                    (B) by striking ``The purpose of the Congenital 
                Heart Disease Surveillance System shall be to 
                facilitate'' and inserting the following:
            ``(1) In general.--The Secretary shall establish a 
        Congenital Heart Disease Surveillance System for the purpose of 
        facilitating'';
            (4) in subsection (c)--
                    (A) in paragraph (2), by redesignating 
                subparagraphs (A) through (E) as clauses (i) through 
                (v), respectively, and adjusting the margins 
                accordingly;
                    (B) by redesignating paragraphs (1) through (3) as 
                subparagraphs (A) through (C), respectively, and 
                adjusting the margins accordingly; and
                    (C) by redesignating such subsection (c) as 
                paragraph (2) of subsection (b) and adjusting the 
                margin accordingly;
            (5) by striking subsections (d) and (e) and inserting the 
        following:
    ``(c) National Congenital Heart Disease Cohort Study.--
            ``(1) In general.--The Secretary, acting through the 
        Director of the Centers for Disease Control and Prevention, 
        shall plan, develop, implement, and submit annual reports to 
        the Congress on research and surveillance activities of the 
        Centers for Disease Control and Prevention, including a cohort 
        study to improve understanding of the epidemiology of CHD 
        across the lifespan, from birth to adulthood, with particular 
        interest in the following:
                    ``(A) Health care utilization and natural history 
                of individuals affected by CHD.
                    ``(B) Demographic factors associated with CHD, such 
                as age, race, ethnicity, gender, and family history of 
                individuals who are diagnosed with the disease.
                    ``(C) Outcome measures, such that analysis of the 
                outcome measures will allow derivation of evidence-
                based best practices and guidelines for CHD patients.
            ``(2) Permissible considerations.--The study under this 
        subsection may--
                    ``(A) gather data on the health outcomes of a 
                diverse population of those affected by CHD;
                    ``(B) consider health disparities among those 
                affected by CHD which may include the consideration of 
                prenatal exposures; and
                    ``(C) incorporate behavioral, emotional, and 
                educational outcomes of those affected by CHD.
            ``(3) Public access.--Subject to appropriate protections of 
        personal information, including protections required under 
        paragraph (4), data generated from the study under this 
        subsection and through the Congenital Heart Disease 
        Surveillance System under subsection (b) shall be made 
        available for purposes of CHD research and to the public.
            ``(4) Patient privacy.--The Secretary shall ensure that the 
        study under this subsection and the Congenital Heart Disease 
        Surveillance System under subsection (b) are carried out in a 
        manner that complies with the requirements applicable to a 
        covered entity under the regulations promulgated pursuant to 
        section 264(c) of the Health Insurance Portability and 
        Accountability Act of 1996.
    ``(d) Congenital Heart Disease Awareness Campaign.--
            ``(1) In general.--The Secretary, acting through the 
        Director of the Centers for Disease Control and Prevention, 
        shall establish and implement an awareness, outreach, and 
        education campaign regarding CHD across the lifespan. The 
        information expressed through such campaign may--
                    ``(A) emphasize the prevalence of CHD;
                    ``(B) identify CHD as a condition that affects 
                those diagnosed throughout their lives; and
                    ``(C) promote the need for pediatric, adolescent, 
                and adult individuals with CHD to seek and maintain 
                lifelong, specialized care.
            ``(2) Permissible activities.--The campaign under this 
        subsection may--
                    ``(A) utilize collaborations or partnerships with 
                other agencies, health care professionals, and patient 
                advocacy organizations that specialize in the needs of 
                individuals with CHD; and
                    ``(B) include the use of print, film, or electronic 
                materials distributed via television, radio, Internet, 
                or other commercial marketing venues.'';
            (6) by redesignating subsection (f) as subsection (e); and
            (7) by adding at the end the following:
    ``(f) Authorization of Appropriations.--To carry out this section, 
there are authorized to be appropriated such sums as may be necessary 
for each of fiscal years 2017 through 2021.''.

SEC. 3. CONGENITAL HEART DISEASE RESEARCH.

    Section 425 of the Public Health Service Act (42 U.S.C. 285b-8) is 
amended by adding the end the following:
    ``(d) Report From NIH.--Not later than 1 year after the date of 
enactment of the Congenital Heart Futures Reauthorization Act of 2017, 
the Director of NIH, acting through the Director of the Institute, 
shall provide a report to Congress--
            ``(1) outlining the ongoing research efforts of the 
        National Institutes of Health regarding congenital heart 
        disease; and
            ``(2) identifying--
                    ``(A) future plans for research regarding 
                congenital heart disease; and
                    ``(B) the areas of greatest need for such 
                research.''.
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