[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[S. 2248 Introduced in Senate (IS)]

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114th CONGRESS
  1st Session
                                S. 2248

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 SENATE OF THE UNITED STATES

                            November 5, 2015

 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 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 2015''.

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

    Section 301 of the Public Health Service Act (42 U.S.C. 241) is 
amended by adding at the end the following--
    ``(f) 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 surveillance and research activities of the 
        Centers for Disease Control and Prevention, including a cohort 
        study to improve understanding of the epidemiology of 
        congenital heart disease (referred to in this subsection and 
        subsection (g) as `CHD') across the lifespan, from birth to 
        adulthood, with particular interest in the following:
                    ``(A) Health care utilization and natural history 
                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.--Subject to paragraph (4), the data 
        generated from the studies under this subsection shall be made 
        available to CHD researchers subject to appropriate privacy 
        protections, and aggregate data from such studies shall be made 
        available to the public.
            ``(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.
    ``(g) 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 that CHD is the most prevalent 
                birth defect;
                    ``(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 shall--
                    ``(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.''.

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 2015, 
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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