I 
111TH CONGRESS 
1ST SESSION H. R. 1570 
To amend the Public Health Service Act to coordinate Federal congenital 
heart disease research efforts and to improve public education and aware-
ness of congenital heart disease, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
MARCH 17, 2009 
Mr. SPACE (for himself and Mr. BILIRAKIS) introduced the following bill; 
which was referred to the Committee on Energy and Commerce 
A BILL 
To amend the Public Health Service Act to coordinate Fed-
eral congenital heart disease research efforts and to im-
prove public education and awareness of congenital heart 
disease, and for other purposes. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Congenital Heart Fu-
tures Act’’. 
SEC. 2. FINDINGS. 
Congress finds the following: 
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(1) Congenital heart defects are the most com-
mon and most deadly group of birth defects and af-
fect nearly 1 percent of all live births, approximately 
36,000 births a year. A child is born with a con-
genital heart defect every 15 minutes. 
(2) Congenital heart disease is a rapidly grow-
ing national health problem. Childhood survival has 
risen from below 20 percent in 1950 to more than 
90 percent today. Due to the increase in childhood 
survival, the congenital heart disease population in-
creases by an estimated 5 percent every year. 
(3) 
Approximately 
800,000 
children 
and 
1,000,000 adults in the United States are now living 
with congenital heart disease and require highly spe-
cialized life-long cardiac care. 
(4) There is no cure for congenital heart dis-
ease. Even survivors of successful childhood treat-
ment can face life-long risks from congenital heart 
disease, including heart failure, rhythmic disorders, 
stroke, renal dysfunction, and neurocognitive dys-
function. 
(5) Less than 10 percent of adults living with 
complex congenital heart disease currently receive 
recommended cardiac care. Many individuals with 
congenital heart disease are unaware that they re-
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quire life-long specialized health surveillance. Delays 
in care can result in premature death and disability. 
(6) The estimated life expectancy for those with 
congenital heart disease is significantly lower than 
for the general population. The life expectancy for 
those born with moderately complex heart defects is 
55, while the estimated life expectancy for those 
born with highly complex defects is between 35 and 
40. 
(7) Despite the prevalence and seriousness of 
the disease, Federal research, data collection, edu-
cation, and awareness activities are limited. 
(8) The strategic plan of the National Heart, 
Lung, and Blood Institute completed in 2007 notes 
that ‘‘successes over several decades have enabled 
people with congenital heart diseases to live beyond 
childhood, but too often inadequate data are avail-
able to guide their treatment as adults’’. 
(9) The strategic plan for the Division of Car-
diovascular Diseases at the National Heart, Lung, 
and Blood Institute, completed in 2008, set goals for 
congenital heart disease research, including under-
standing the development and genetic basis of con-
genital heart disease, improving evidence-based care 
and treatment of children with congenital and ac-
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quired pediatric heart disease, and improving evi-
dence-based care and treatment of adults with con-
genital heart disease. 
SEC. 3. PUBLIC EDUCATION AND AWARENESS OF CON-
GENITAL HEART DISEASE. 
Title III of the Public Health Service Act (42 U.S.C. 
241 et seq.) is amended by adding at the end the fol-
lowing: 
‘‘PART S—PROGRAMS RELATING TO CONGENITAL 
HEART DISEASE 
‘‘SEC. 399HH. PUBLIC EDUCATION AND AWARENESS OF 
CONGENITAL HEART DISEASE. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Director of the Centers for Disease Control and Pre-
vention and in collaboration with appropriate congenital 
heart disease patient organizations and professional orga-
nizations, may, directly or through grants, cooperative 
agreements, or contracts to eligible entities, conduct, sup-
port, and promote a comprehensive public education and 
awareness campaign to increase public and medical com-
munity awareness regarding congenital heart disease, in-
cluding the need for life-long treatment of congenital heart 
disease survivors. 
‘‘(b) ELIGIBILITY FOR GRANTS.—To be eligible to re-
ceive a grant, cooperative agreement, or contract under 
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this section, an entity shall be a State or private nonprofit 
entity and shall submit to the Secretary an application at 
such time, in such manner, and containing such informa-
tion as the Secretary may require.’’. 
SEC. 4. NATIONAL CONGENITAL HEART DISEASE REGISTRY. 
Title III of the Public Health Service Act (42 U.S.C. 
241 et seq.), as amended by section 3, is further amended 
by adding at the end the following: 
‘‘SEC. 399II. NATIONAL CONGENITAL HEART DISEASE REG-
ISTRY. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Director of the Centers for Disease Control and Pre-
vention, may— 
‘‘(1) enhance and expand infrastructure to 
track the epidemiology of congenital heart disease 
and to organize such information into a comprehen-
sive, nationwide registry of actual occurrences of 
congenital heart disease, to be known as the ‘Na-
tional Congenital Heart Disease Registry’; or 
‘‘(2) award a grant to one eligible entity to un-
dertake the activities described in paragraph (1). 
‘‘(b) PURPOSE.—The purpose of the Congenital 
Heart Disease Registry shall be to facilitate further re-
search into the types of health services patients use and 
to identify possible areas for educational outreach and pre-
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vention in accordance with standard practices of the Cen-
ters for Disease Control and Prevention. 
‘‘(c) CONTENT.—The Congenital Heart Disease Reg-
istry— 
‘‘(1) may include information concerning the in-
cidence and prevalence of congenital heart disease in 
the United States; 
‘‘(2) may be used to collect and store data on 
congenital heart disease, including data con-
cerning— 
‘‘(A) 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; 
‘‘(B) risk factors associated with the dis-
ease; 
‘‘(C) causation of the disease; 
‘‘(D) treatment approaches; and 
‘‘(E) outcome measures, such that analysis 
of the outcome measures will allow derivation of 
evidence-based best practices and guidelines for 
congenital heart disease patients; and 
‘‘(3) may ensure the collection and analysis of 
longitudinal data related to individuals of all ages 
with congenital heart disease, including infants, 
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young children, adolescents, and adults of all ages, 
including the elderly. 
‘‘(d) COORDINATION WITH FEDERAL, STATE, AND 
LOCAL REGISTRIES.—In establishing the National Con-
genital Heart Registry, the Secretary may identify, build 
upon, expand, and coordinate among existing data and 
surveillance systems, surveys, registries, and other Federal 
public health infrastructure, including— 
‘‘(1) State birth defects surveillance systems; 
‘‘(2) the State birth defects tracking systems of 
the Centers for Disease Control and Prevention; 
‘‘(3) the Metropolitan Atlanta Congenital De-
fects Program; and 
‘‘(4) the National Birth Defects Prevention 
Network. 
‘‘(e) PUBLIC ACCESS.—The Congenital Heart Dis-
ease Registry shall be made available to the public, includ-
ing congenital heart disease researchers. 
‘‘(f) PATIENT PRIVACY.—The Secretary shall ensure 
that the Congenital Heart Disease Registry is maintained 
in a manner that complies with the regulations promul-
gated under section 264 of the Health Insurance Port-
ability and Accountability Act of 1996. 
‘‘(g) ELIGIBILITY FOR GRANT.—To be eligible to re-
ceive a grant under subsection (a)(2), an entity shall— 
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‘‘(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 in-
formation as the Secretary may require.’’. 
SEC. 5. ADVISORY COMMITTEE ON CONGENITAL HEART 
DISEASE. 
Title III of the Public Health Service Act (42 U.S.C. 
241 et seq.), as amended by section 4, is further amended 
by adding at the end the following: 
‘‘SEC. 399JJ. ADVISORY COMMITTEE ON CONGENITAL 
HEART DISEASE. 
‘‘(a) 
ESTABLISHMENT.—The 
Secretary, 
acting 
through the Director of the Centers for Disease Control 
and Prevention, may establish an advisory committee, to 
be known as the ‘Advisory Committee on Congenital Heart 
Disease’ (referred to in this section as the ‘Advisory Com-
mittee’). 
‘‘(b) MEMBERSHIP.—The members of the Advisory 
Committee may be appointed by the Secretary, acting 
through the Centers for Disease Control and Prevention, 
and shall include— 
‘‘(1) at least one representative from— 
‘‘(A) the National Institutes of Health; 
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‘‘(B) the Centers for Disease Control and 
Prevention; and 
‘‘(C) a national patient advocacy organiza-
tion with experience advocating on behalf of pa-
tients living with congenital heart disease; 
‘‘(2) at least one epidemiologist who has experi-
ence working with data registries; 
‘‘(3) clinicians, including— 
‘‘(A) at least one with experience diag-
nosing or treating congenital heart disease; and 
‘‘(B) at least one with experience using 
medical data registries; and 
‘‘(4) at least one publicly or privately funded re-
searcher with experience researching congenital 
heart disease. 
‘‘(c) DUTIES.—The Advisory Committee may review 
information and make recommendations to the Secretary 
concerning— 
‘‘(1) the development and maintenance of the 
National Congenital Heart Disease Registry estab-
lished under section 399II; 
‘‘(2) the type of data to be collected and stored 
in the National Congenital Heart Disease Registry; 
‘‘(3) the manner in which such data is to be 
collected; 
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‘‘(4) the use and availability of such data, in-
cluding guidelines for such use; and 
‘‘(5) other matters, as the Secretary determines 
to be appropriate. 
‘‘(d) REPORT.—Not later than 180 days after the 
date on which the Advisory Committee is established and 
annually thereafter, the Advisory Committee shall submit 
a report to the Secretary concerning the information de-
scribed in subsection (c), including recommendations with 
respect to the results of the Advisory Committee’s review 
of such information.’’. 
SEC. 6. CONGENITAL HEART DISEASE RESEARCH. 
Subpart 2 of part C of title IV of the Public Health 
Service Act (42 U.S.C. 285b et seq.) is amended by adding 
at the end the following: 
‘‘SEC. 425. CONGENITAL HEART DISEASE. 
‘‘(a) IN GENERAL.—The Director of the Institute 
may expand, intensify, and coordinate research and re-
lated activities of the Institute with respect to congenital 
heart disease, which may include congenital heart disease 
research with respect to— 
‘‘(1) causation of congenital heart disease, in-
cluding genetic causes; 
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‘‘(2) long-term outcomes in individuals with 
congenital heart disease, including infants, children, 
teenagers, adults, and elderly individuals; 
‘‘(3) diagnosis, treatment, and prevention; 
‘‘(4) studies using longitudinal data and retro-
spective analysis to identify effective treatments and 
outcomes for individuals with congenital heart dis-
ease; and 
‘‘(5) identifying barriers to life-long care for in-
dividuals with congenital heart disease. 
‘‘(b) COORDINATION OF RESEARCH ACTIVITIES.— 
The Director of the Institute may coordinate research ef-
forts related to congenital heart disease among multiple 
research institutions and may develop research networks. 
‘‘(c) MINORITY
AND
MEDICALLY
UNDERSERVED 
COMMUNITIES.—In carrying out the activities described in 
this section, the Director of the Institute shall consider 
the application of such research and other activities to mi-
nority and medically underserved communities.’’. 
SEC. 7. AUTHORIZATION OF APPROPRIATIONS. 
There are authorized to be appropriated to carry out 
the amendments made by this Act such sums as may be 
necessary for each of fiscal years 2010 through 2014. 
Æ 
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