S.Amdt. 3075

SA 3075. Mr. DURBIN submitted an amendment intended to be proposed to
amendment SA 2786 proposed by Mr. Reid (for himself, Mr. Baucus, Mr.
Dodd, and Mr. Harkin) to the bill H.R. 3590, to amend the Internal
Revenue Code of 1986 to modify the first-time homebuyers credit in the
case of members of the Armed Forces and certain other Federal
employees, and for other purposes; which was ordered to lie on the
table; as follows:

On page 1266, between lines 17 and 18, insert the
following:

Subtitle F--Programs Relating to Congenital Heart Disease

SEC. 4501. PROGRAMS RELATING TO CONGENITAL HEART DISEASE.

(a) Short Title.--This subtitle may be cited as the
``Congenital Heart Futures Act''.
(b) Programs Relating to Congenital Heart Disease.--
(1) Public education and awareness; national registry;
advisory committee.--Title III of the Public Health Service
Act (42 U.S.C. 241 et seq.), as amended by section 4303, is
further amended by adding at the end the following:

``PART V--PROGRAMS RELATING TO CONGENITAL HEART DISEASE

``SEC. 399NN-1. 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. 399NN-2. 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 nationally-representative surveillance
system with development of a population-based 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.
``(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

[[Page S12740]]

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, as appropriate,
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.
``(h) Authorization of Appropriations.--There are
authorized to be appropriated to carry out this section such
sums as may be necessary for each of fiscal years 2010
through 2014.''.

``SEC. 399NN-3. 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
399NN-2;
``(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.''.
(2) 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.''.
(c) Authorization of Appropriations.--There are authorized
to be appropriated to carry out the amendments made by this
section such sums as may be necessary for each of fiscal
years 2010 through 2014.
______