[Congressional Record Volume 164, Number 196 (Wednesday, December 12, 2018)]
[Senate]
[Pages S7524-S7525]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




          CONGENITAL HEART FUTURES REAUTHORIZATION ACT OF 2017

  Mr. GARDNER. Mr. President, I ask unanimous consent that the Senate 
proceed to the immediate consideration of Calendar No. 555, H.R. 1222.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The clerk will report the bill by title.
  The senior assistant legislative clerk read as follows:

       A bill (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.

  There being no objection, the Senate proceeded to consider the bill, 
which had been reported from the Committee on Health, Education, Labor, 
and Pensions, with an amendment to strike all after the enacting clause 
and insert in lieu thereof the following:

     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

[[Page S7525]]

       ``(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 such sums as 
     may be necessary for each of fiscal years 2019 through 
     2023.''.

     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.

  Mr. GARDNER. I ask unanimous consent that the committee-reported 
substitute amendment be withdrawn, the Durbin substitute amendment at 
the desk be agreed to, the bill, as amended, be considered read a third 
time and passed, and the motion to reconsider be considered made and 
laid upon the table with no intervening action or debate.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The committee-reported substitute amendment was withdrawn.
  The amendment (No. 4103) was agreed to, as follows:

                (Purpose: In the nature of a substitute)

       Strike all after the enacting clause and insert the 
     following:

     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.
  The amendment was ordered to be engrossed, and the bill to be read a 
third time.
  The bill was read the third time.
  The bill (H.R. 1222), as amended, was passed.

                          ____________________