Congenital Heart Futures Act - Amends the Public Health Service Act to authorize the Secretary of Health and Human Services (HHS), acting through the Director of the Centers for Disease Control and Prevention (CDC) in collaboration with appropriate congenital heart disease patient organizations and professional organizations, to conduct, support, and promote a comprehensive public education campaign to increase awareness regarding congenital heart disease, including the need for lifelong treatment.
Authorizes the Secretary to: (1) award a grant to one entity to enhance and expand infrastructure to track the epidemiology of congenital heart disease and to organize such information into a comprehensive National Congenital Heart Disease Registry with the purpose of facilitating research into the types of health services patients use and identifying possible areas for educational outreach and prevention; and (2) establish an Advisory Committee on Congenital Heart Disease.
Authorizes the Director of the National Heart, Lung, and Blood Institute to expand, intensify, and coordinate research and related activities of the Institute regarding congenital heart disease.
[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1570 Introduced in House (IH)]
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
awareness 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 Federal congenital
heart disease research efforts and to improve public education and
awareness of congenital heart disease, and for other purposes.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Congenital Heart Futures Act''.
SEC. 2. FINDINGS.
Congress finds the following:
(1) Congenital heart defects are the most common and most
deadly group of birth defects and affect nearly 1 percent of
all live births, approximately 36,000 births a year. A child is
born with a congenital heart defect every 15 minutes.
(2) Congenital heart disease is a rapidly growing 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 increases 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 specialized life-long cardiac care.
(4) There is no cure for congenital heart disease. Even
survivors of successful childhood treatment can face life-long
risks from congenital heart disease, including heart failure,
rhythmic disorders, stroke, renal dysfunction, and
neurocognitive dysfunction.
(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 require 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, education, 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 available to guide their treatment as adults''.
(9) The strategic plan for the Division of Cardiovascular
Diseases at the National Heart, Lung, and Blood Institute,
completed in 2008, set goals for congenital heart disease
research, including understanding the development and genetic
basis of congenital heart disease, improving evidence-based
care and treatment of children with congenital and acquired
pediatric heart disease, and improving evidence-based care and
treatment of adults with congenital heart disease.
SEC. 3. PUBLIC EDUCATION AND AWARENESS OF CONGENITAL 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 following:
``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 Prevention and in collaboration
with appropriate congenital heart disease patient organizations and
professional organizations, may, directly or through grants,
cooperative agreements, or contracts to eligible entities, conduct,
support, and promote a comprehensive public education and awareness
campaign to increase public and medical community awareness regarding
congenital heart disease, including the need for life-long treatment of
congenital heart disease survivors.
``(b) Eligibility for Grants.--To be eligible to receive a grant,
cooperative agreement, or contract under 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 information 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 REGISTRY.
``(a) In General.--The Secretary, acting through the Director of
the Centers for Disease Control and Prevention, may--
``(1) enhance and expand infrastructure to track the
epidemiology of congenital heart disease and to organize such
information into a comprehensive, nationwide registry of actual
occurrences of congenital heart disease, to be known as the
`National Congenital Heart Disease Registry'; or
``(2) award a grant to one eligible entity to undertake the
activities described in paragraph (1).
``(b) Purpose.--The purpose of the Congenital Heart Disease
Registry shall be to facilitate further research into the types of
health services patients use and to identify possible areas for
educational outreach and prevention in accordance with standard
practices of the Centers for Disease Control and Prevention.
``(c) Content.--The Congenital Heart Disease Registry--
``(1) may include information concerning the incidence 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 concerning--
``(A) demographic factors associated with
congenital heart disease, such as age, race, ethnicity,
sex, and family history of individuals who are
diagnosed with the disease;
``(B) risk factors associated with the disease;
``(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, young children,
adolescents, and adults of all ages, including the elderly.
``(d) Coordination With Federal, State, and Local Registries.--In
establishing the National Congenital 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 Defects Program;
and
``(4) the National Birth Defects Prevention Network.
``(e) Public Access.--The Congenital Heart Disease Registry shall
be made available to the public, including 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 promulgated under section 264 of the
Health Insurance Portability and Accountability Act of 1996.
``(g) Eligibility for Grant.--To be eligible to receive a grant
under subsection (a)(2), 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.''.
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
Committee').
``(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;
``(B) the Centers for Disease Control and
Prevention; and
``(C) a national patient advocacy organization with
experience advocating on behalf of patients living with
congenital heart disease;
``(2) at least one epidemiologist who has experience
working with data registries;
``(3) clinicians, including--
``(A) at least one with experience diagnosing 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 researcher
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 established 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;
``(4) the use and availability of such data, including
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 described 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 related 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, including
genetic causes;
``(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 retrospective
analysis to identify effective treatments and outcomes for
individuals with congenital heart disease; and
``(5) identifying barriers to life-long care for
individuals with congenital heart disease.
``(b) Coordination of Research Activities.--The Director of the
Institute may coordinate research efforts 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 minority 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.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Energy and Commerce.
Referred to the Subcommittee on Health.
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