[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1222 Engrossed Amendment Senate (EAS)]
<DOC>
In the Senate of the United States,
December 12, 2018.
Resolved, That the bill from the House of Representatives (H.R.
1222) entitled ``An Act 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.'', do pass with the following
AMENDMENT:
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.
Attest:
Secretary.
115th CONGRESS
2d Session
H.R. 1222
_______________________________________________________________________
AMENDMENT