[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.

[[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.

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