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(B) in clause (ii), by striking the period
and inserting ‘‘; and’’; and
(C) by adding at the end the following:
‘‘(iii) for each of the fiscal years 2002
through 2005, such sums as may be nec-
essary.’’; and
(2) in paragraph (2)—
(A) in subparagraph (A), by striking
‘‘and’’ at the end;
(B) in subparagraph (B), by striking the
period and inserting ‘‘; and’’; and
(C) by adding at the end the following:
‘‘(C) for each of the fiscal years 2002
through 2005, such sums as may be nec-
essary.’’.
TITLE XXI—SPECIAL NEEDS OF
CHILDREN 
REGARDING
ORGAN TRANSPLANTATION
SEC. 2101. SHORT TITLE.
This title may be cited as the ‘‘Pediatric Organ
Transplantation Improvement Act of 2000’’.
119
SEC. 2102. ORGAN PROCUREMENT AND TRANSPLANTATION
NETWORK; AMENDMENTS REGARDING NEEDS
OF CHILDREN.
(a) IN GENERAL.—Section 372(b)(2) of the Public
Health Service Act (42 U.S.C. 274(b)(2)) is amended—
(1) in subparagraph (J), by striking ‘‘and’’ at
the end;
(2) in each of subparagraphs (K) and (L), by
striking the period and inserting a comma; and
(3) by adding at the end the following subpara-
graphs:
‘‘(M) recognize the differences in health
and in organ transplantation issues between
children and adults throughout the system and
adopt criteria, polices, and procedures that ad-
dress the unique health care needs of children,
‘‘(N) carry out studies and demonstration
projects for the purpose of improving proce-
dures for organ donation procurement and allo-
cation, including but not limited to projects to
examine and attempt to increase transplan-
tation among populations with special needs, in-
cluding children and individuals who are mem-
bers of racial or ethnic minority groups, and
among populations with limited access to trans-
portation, and
120
‘‘(O) provide that for purposes of this
paragraph, the term ‘children’ refers to individ-
uals who are under the age of 18.’’.
(b) 
STUDY
REGARDING
IMMUNOSUPPRESSIVE
DRUGS.—
(1) IN GENERAL.—The Secretary of Health and
Human Services (referred to in this subsection as
the ‘‘Secretary’’) shall provide for a study to deter-
mine the costs of immunosuppressive drugs that are
provided to children pursuant to organ transplants
and to determine the extent to which health plans
and health insurance cover such costs. The Sec-
retary may carry out the study directly or through
a grant to the Institute of Medicine (or other public
or nonprofit private entity).
(2) RECOMMENDATIONS
REGARDING
CERTAIN
ISSUES.—The Secretary shall ensure that, in addi-
tion to making determinations under paragraph (1),
the study under such paragraph makes recommenda-
tions regarding the following issues:
(A) The costs of immunosuppressive drugs
that are provided to children pursuant to organ
transplants and to determine the extent to
which health plans, health insurance and gov-
ernment programs cover such costs.
121
(B) The extent of denial of organs to be
released for transplant by coroners and medical
examiners.
(C) The special growth and developmental
issues that children have pre- and post- organ
transplantation.
(D) Other issues that are particular to the
special health and transplantation needs of chil-
dren.
(3) REPORT.—The Secretary shall ensure that,
not later than December 31, 2000, the study under
paragraph (1) is completed and a report describing
the findings of the study is submitted to the Con-
gress.
TITLE XXII—MISCELLANEOUS
PROVISIONS
SEC. 2201. REPORT REGARDING RESEARCH ON RARE DIS-
EASES IN CHILDREN.
Not later than 180 days after the date of the enact-
ment of this Act, the Director of the National Institutes
of Health shall submit to the Congress a report on—
(1) the activities that, during fiscal year 2000,
were conducted and supported by such Institutes
with respect to rare diseases in children, including
Friedreich’s ataxia; and
122
(2) the activities that are planned to be con-
ducted and supported by such Institutes with respect
to such diseases during the fiscal years 2001
through 2005.
TITLE XXIII—EFFECTIVE DATE
SEC. 2301. EFFECTIVE DATE.
This Act and the amendments made by this Act take
effect October 1, 2000, or upon the date of the enactment
of this Act, whichever occurs later.
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