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 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 award grants to nonprofit entities to 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]
[H.R. 1222 Introduced in House (IH)]

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115th CONGRESS
  1st Session
                                H. R. 1222

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.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           February 27, 2017

  Mr. Bilirakis (for himself and Mr. Schiff) introduced the following 
    bill; which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
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.

    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 SURVEILLANCE SYSTEM.

    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--
            ``(1) enhance and expand research and surveillance 
        infrastructure to study and track the epidemiology of 
        congenital heart disease (in this section referred to as 
        `CHD');
            ``(2) plan and implement a public outreach and education 
        campaign regarding CHD across the lifespan; and
            ``(3) award grants to eligible entities to undertake the 
        activities described in subsections (b) and (c).
    ``(b) National Congenital Heart Disease Study.--
            ``(1) In general.--The Director of the Centers for Disease 
        Control and Prevention shall plan, develop, implement, and 
        submit one or more reports to the Congress on a 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 of those 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.--Data generated from the study under 
        this subsection shall be made available--
                    ``(A) for purposes of CHD research, subject to 
                appropriate protections of personal privacy, including 
                protections required by paragraph (4); and
                    ``(B) to the public, subject to paragraph (4) and 
                with appropriate exceptions for protection of personal 
                privacy.
            ``(4) Patient privacy.--The Secretary shall ensure that the 
        study under this subsection is 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.
    ``(c) Congenital Heart Disease Awareness Campaign.--
            ``(1) In general.--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.
            ``(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, and 
                electronic materials distributed via television, radio, 
                Internet, or other commercial marketing venues.
    ``(d) 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 CHD; and
            ``(2) submit to the Secretary an application at such time, 
        in such manner, and containing such information as the 
        Secretary may require.
    ``(e) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $4,000,000 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 to read as follows:

``SEC. 425. CONGENITAL HEART DISEASE.

    ``(a) In General.--The Director of the Institute may expand, 
intensify, and coordinate research and related activities of the 
Institute with respect to congenital heart disease, which may include 
congenital heart disease research with respect to--
            ``(1) causation of congenital heart disease, including 
        genetic causes;
            ``(2) long-term outcomes in individuals with congenital 
        heart disease, including infants, children, teenagers, adults, 
        and elderly individuals;
            ``(3) diagnosis, treatment, and prevention;
            ``(4) studies using longitudinal data and retrospective 
        analysis to identify effective treatments and outcomes for 
        individuals with congenital heart disease; and
            ``(5) identifying barriers to lifelong care for individuals 
        with congenital heart disease.
    ``(b) Coordination of Research Activities.--The Director of the 
Institute may coordinate research efforts related to congenital heart 
disease among multiple research institutions and may develop research 
networks.
    ``(c) Minority and Medically Underserved Communities.--In carrying 
out the activities described in this section, the Director of the 
Institute shall consider the application of such research and other 
activities to minority and medically underserved communities.
    ``(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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