[Congressional Record Volume 163, Number 35 (Tuesday, February 28, 2017)]
[Senate]
[Pages S1504-S1505]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. DURBIN (for himself and Mr. Casey):
  S. 477. 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; to the Committee on Health, Education, Labor, 
and Pensions.

                                 S. 477

       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.''.

[[Page S1505]]

  


     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.''.

                          ____________________