In the Senate of the United States, 
December 12, 2018. 
Resolved, That the bill from the House of Representa-
tives (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 pur-
poses.’’, 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 Fu-
tures Reauthorization Act of 2017’’. 
SEC. 2. NATIONAL CONGENITAL HEART DISEASE RE-
SEARCH, SURVEILLANCE, AND AWARENESS. 
Section 399V–2 of the Public Health Service Act (42 
U.S.C. 280g–13) is amended to read as follows:
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‘‘SEC. 399V–2. NATIONAL CONGENITAL HEART DISEASE RE-
SEARCH, SURVEILLANCE, AND AWARENESS. 
‘‘(a) IN GENERAL.—The Secretary shall, as appro-
priate— 
‘‘(1) enhance and expand research and data col-
lection efforts related to congenital heart disease, in-
cluding to study and track the epidemiology of con-
genital heart disease to understand health outcomes 
for individuals with congenital heart disease across 
all ages; 
‘‘(2) conduct activities to improve public aware-
ness of, and education related to, congenital heart dis-
ease, 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 con-
genital heart disease in the United States;
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‘‘(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, eth-
nicity, 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 car-
rying out the activities under this section, the Sec-
retary may, as appropriate— 
‘‘(A) collect data on the health outcomes, in-
cluding 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 prac-
tices for individuals with congenital heart dis-
ease; and 
‘‘(B) consider health disparities among in-
dividuals with congenital heart disease, which
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may include the consideration of prenatal expo-
sures. 
‘‘(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, pro-
tects personal privacy to the extent required by applicable 
Federal and State law. 
‘‘(f) ELIGIBILITY FOR GRANTS.—To be eligible to re-
ceive 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
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‘‘(2) submit to the Secretary an application at 
such time, in such manner, and containing such in-
formation 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 Pen-
sions of the Senate and the Committee on Energy and Com-
merce 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 re-
search findings and ongoing research efforts, gaps, and 
areas of greatest need within the Department of Health and 
Human Services regarding congenital heart disease in pa-
tients of all ages. 
Attest: 
Secretary.