Congenital Heart Futures Reauthorization Act of 2017

Summary: (This measure has not been amended since it was reported to the House on September 25, 2017.  Congenital Heart Futures Reauthorization Act of 2017 (Sec. 2) 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 (HHS), regarding congenital heart disease, to enhance and expand research and surveillance infrastructure. (Congenital heart disease is a condition caused by a heart defect that is present at birth.) HHS must award grants to nonprofit entities to conduct a study of congenital heart disease, from birth to adulthood, that considers health care utilization, demographic factors, and outcomes. Data from the study must be made available to the public. (Sec. 3) 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.

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.

                               Speaker of the House of Representatives.

                            Vice President of the United States and    
                                               President of the Senate.