[Congressional Record Volume 146, Number 56 (Tuesday, May 9, 2000)]
[House]
[Pages H2698-H2720]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
CHILDREN'S HEALTH ACT OF 2000
Mr. BILIRAKIS. Mr. Speaker, I move to suspend the rules and pass the
bill (H.R. 4365) to amend the Public Health Service Act with respect to
children's health, as amended.
The Clerk read as follows:
H.R. 4365
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 ``Children's Health Act of
2000''.
SEC. 2. TABLE OF CONTENTS.
The table of contents for this Act is as follows:
Sec. 1. Short title.
Sec. 2. Table of contents.
TITLE I--AUTISM
Subtitle A--Surveillance and Research Regarding Prevalence and Pattern
of Autism
Sec. 101. Short title.
Sec. 102. Surveillance and research programs; clearinghouse; advisory
committee.
Subtitle B--Expansion, Intensification, and Coordination of Autism
Activities of National Institutes of Health
Sec. 111. Short title.
Sec. 112. Expansion, intensification, and coordination; information and
education; interagency coordinating committee.
TITLE II--RESEARCH AND DEVELOPMENT REGARDING FRAGILE X
Sec. 201. Short title.
Sec. 202. National Institute of Child Health and Human Development;
research on fragile X.
Sec. 203. National Institute of Child Health and Human Development;
loan repayment program regarding research on fragile X.
TITLE III--JUVENILE ARTHRITIS AND RELATED CONDITIONS
Sec. 301. National Institute of Arthritis and Musculoskeletal and Skin
Diseases; research on juvenile arthritis and related
conditions.
Sec. 302. Information clearinghouse.
TITLE IV--REDUCING BURDEN OF DIABETES AMONG CHILDREN AND YOUTH
Sec. 401. Programs of Centers for Disease Control and Prevention.
Sec. 402. Programs of National Institutes of Health.
TITLE V--ASTHMA TREATMENT SERVICES FOR CHILDREN
Sec. 501. Short title.
Subtitle A--Treatment Services
Sec. 511. Grants for children's asthma relief.
Sec. 512. Technical and conforming amendments.
Subtitle B--Prevention Activities
Sec. 521. Preventive health and health services block grant; systems
for reducing asthma-related illnesses through urban
cockroach management.
Subtitle C--Coordination of Federal Activities
Sec. 531. Coordination through National Institutes of Health.
Subtitle D--Compilation of Data
Sec. 541. Compilation of data by Centers for Disease Control and
Prevention.
TITLE VI--BIRTH DEFECTS PREVENTION ACTIVITIES
Subtitle A--Folic Acid Promotion
Sec. 601. Short title.
Sec. 602. Program regarding effects of folic acid in prevention of
birth defects.
Subtitle B--National Center on Birth Defects and Developmental
Disabilities
Sec. 611. National Center on Birth Defects and Developmental
Disabilities.
TITLE VII--EARLY DETECTION, DIAGNOSIS, AND TREATMENT REGARDING HEARING
LOSS IN INFANTS
Sec. 701. Short title.
Sec. 702. Purposes.
Sec. 703. Programs of Health Resources and Services Administration,
Centers for Disease Control and Prevention, and National
Institutes of Health.
TITLE VIII--CHILDREN AND EPILEPSY
Sec. 801. National public health campaign on epilepsy; seizure disorder
demonstration projects in medically underserved areas.
TITLE IX--SAFE MOTHERHOOD; INFANT HEALTH PROMOTION
Subtitle A--Safe Motherhood Monitoring and Prevention Research
Sec. 901. Short title.
Sec. 902. Monitoring; prevention research and other activities.
Subtitle B--Pregnant Mothers and Infants Health Promotion
Sec. 911. Short title.
Sec. 912. Programs regarding prenatal and postnatal health.
TITLE X--REVISION AND EXTENSION OF CERTAIN PROGRAMS
Subtitle A--Pediatric Research Initiative
Sec. 1001. Short title.
[[Page H2699]]
Sec. 1002. Establishment of pediatric research initiative.
Sec. 1003. Investment in tomorrow's pediatric researchers.
Subtitle B--Other Programs
Sec. 1011. Childhood immunizations.
Sec. 1012. Screenings, referrals, and education regarding lead
poisoning.
TITLE XI--CHILDHOOD SKELETAL MALIGNANCIES
Sec. 1101. Programs of Centers for Disease Control and Prevention and
National Institutes of Health.
TITLE XII--ADOPTION AWARENESS
Subtitle A--Infant Adoption Awareness
Sec. 1201. Short title.
Sec. 1202. Grants regarding infant adoption awareness.
Subtitle B--Special Needs Adoption Awareness
Sec. 1211. Short title.
Sec. 1212. Special needs adoption programs; public awareness campaign
and other activities.
TITLE XIII--TRAUMATIC BRAIN INJURY
Sec. 1301. Short title.
Sec. 1302. Programs of Centers for Disease Control and Prevention.
Sec. 1303. Programs of National Institutes of Health.
Sec. 1304. Programs of Health Resources and Services Administration.
TITLE XIV--PREVENTION AND CONTROL OF INJURIES
Sec. 1401. Authorization of Appropriations for programs of Centers for
Disease Control and Prevention.
TITLE XV--HEALTHY START INITIATIVE
Sec. 1501. Short title.
Sec. 1502. Continuation of healthy start program.
TITLE XVI--ORAL HEALTH PROMOTION AND DISEASE PREVENTION
Sec. 1601. Oral health promotion and disease prevention.
TITLE XVII--VACCINE COMPENSATION PROGRAM
Sec. 1701. Short title.
Sec. 1702. Content of petitions.
TITLE XVIII--HEPATITIS C
Sec. 1801. Short title.
Sec. 1802. Surveillance and education regarding hepatitis C.
TITLE XIX--NIH INITIATIVE ON AUTOIMMUNE DISEASES
Sec. 1901. Short title.
Sec. 1902. Juvenile diabetes, juvenile arthritis, lupus, multiple
sclerosis, and other autoimmune-diseases; initiative
through Director of National Institutes of Health.
TITLE XX--GRADUATE MEDICAL EDUCATION PROGRAMS IN CHILDREN'S HOSPITALS
Sec. 2001. Extension of authorization of appropriations.
TITLE XXI--SPECIAL NEEDS OF CHILDREN REGARDING ORGAN TRANSPLANTATION
Sec. 2101. Short title.
Sec. 2102. Organ Procurement and Transplantation Network; amendments
regarding needs of children.
TITLE XXII--MISCELLANEOUS PROVISIONS
Sec. 2201. Report regarding research on rare diseases in children.
TITLE XXIII--EFFECTIVE DATE
Sec. 2301. Effective date.
TITLE I--AUTISM
Subtitle A--Surveillance and Research Regarding Prevalence and Pattern
of Autism
SEC. 101. SHORT TITLE.
This subtitle may be cited as the ``Autism Statistics,
Surveillance, Research, and Epidemiology Act of 2000
(ASSURE)''.
SEC. 102. SURVEILLANCE AND RESEARCH PROGRAMS; CLEARINGHOUSE;
ADVISORY COMMITTEE.
Part B of title III of the Public Health Service Act (42
U.S.C. 243 et seq.) is amended by inserting after section
317G the following section:
``surveillance and research regarding autism and pervasive
developmental disorders
``Sec. 317H. (a) In General.--The Secretary , acting
through the Director of the Centers for Disease Control and
Prevention, may make awards of grants and cooperative
agreements for the collection, analysis, and reporting of
data on autism and pervasive developmental disorders. An
entity may receive such an award only if the entity is a
public or nonprofit private entity ``(including health
departments of States and political subdivisions of States,
and including universities and other educational entities).
In making such awards, the Secretary may provide direct
technical assistance in lieu of cash.
``(b) Centers of Excellence in Autism and Pervasive
Developmental Disorders Epidemiology.--
``(1) In general.--The Secretary, acting through the
Director of the Centers for Disease Control and Prevention,
shall (subject to the extent of amounts made available in
appropriations Acts) establish not less than three, and not
more than five, regional centers of excellence in autism and
pervasive developmental disorders epidemiology for the
purpose of collecting and analyzing information on the
number, incidence, correlates, and causes of autism and
related developmental disorders.
``(2) Recipients of awards for establishment of centers.--
Centers under paragraph (1) shall be established and operated
through the award of grants or cooperative agreements to
public or nonprofit private entities that conduct research,
including health departments of States and political
subdivisions of States, and including universities and other
educational entities.
``(3) Certain requirements.--An award for a center under
paragraph (1) may be made only if the entity involved submits
to the Secretary an application containing such agreements
and information as the Secretary may require, including an
agreement that the center involved will operate in accordance
with the following:
``(A) The center will collect, analyze, and report autism
and pervasive developmental disorders data according to
guidelines prescribed by the Director, after consultation
with relevant State and local public health officials,
private sector developmental disorder researchers, and
advocates for those with developmental disorders;
``(B) The center will assist with the development and
coordination of State autism and pervasive developmental
disorders surveillance efforts within a region;
``(C) The center will provide education, training, and
clinical skills improvement for health professionals aimed at
better understanding and treatment of autism and related
developmental disorders; and
``(D) The center will identify eligible cases and controls
through its surveillance systems and conduct research into
factors which may cause autism and related developmental
disorders; each program will develop or extend an area of
special research expertise (including, but not limited to,
genetics, environmental exposure to contaminants, immunology,
and other relevant research specialty areas).
``(c) Clearinghouse.--The Secretary, acting through the
Director of the Centers for Disease Control and Prevention,
shall carry out the following:
``(1) The Centers for Disease Control and Prevention shall
serve as the coordinating agency for autism and pervasive
developmental disorders surveillance activities through the
establishment of a clearinghouse for the collection and
storage of data generated from the monitoring programs
created by this section. The functions of such a
clearinghouse shall include facilitating the coordination of
research and policy development relating to the epidemiology
of autism and other pervasive developmental disorders.
``(2) The Secretary shall coordinate the Federal response
to requests for assistance from State health department
officials regarding potential or alleged autism or
developmental disorder clusters.
``(d) Advisory Committee.--
``(1) In general.--The Secretary shall establish an
Advisory Committee for Autism and Pervasive developmental
disorders Epidemiology Research (in this section referred to
as the `Committee'). The Committee shall provide advice and
recommendations to the Director of the Centers for Disease
Control and Prevention on--
``(A) the establishment of a national autism and pervasive
developmental disorders surveillance program;
``(B) the establishment of centers of excellence in autism
and pervasive developmental disorders epidemiology;
``(C) methods and procedures to more effectively coordinate
government and non-government programs and research on autism
and pervasive developmental disorders epidemiology; and
``(D) the effective operation of autism and pervasive
developmental disorders epidemiology research activities.
``(2) Composition.--
``(A) In general.--The Committee shall be composed of ex
officio members in accordance with subparagraph (B) and 11
appointed members in accordance with subparagraph (C).
``(B) Ex officio members.--The following officials shall
serve as ex officio members of the Committee:
``(i) The Director of the National Center for Environmental
Health.
``(ii) The Assistant Administrator of the Agency for Toxic
Substances and Disease Registry.
``(iii) The Director of the National Institute of Child
Health and Human Development.
``(iv) The Director of the National Institute of
Neurological Disorders and Stroke.
``(C) Appointed members.--Appointments to the Committee
shall be made in accordance with the following:
``(i) Two members shall be research scientists with
demonstrated achievements in research related to autism and
related developmental disorders. The scientists shall be
appointed by the Secretary in consultation with the National
Academy of Sciences.
``(ii) Five members shall be representatives of the five
national organizations whose primary emphasis is on research
into autism and other pervasive developmental disorders. One
representative from each of such organizations shall be
appointed by the Secretary in consultation with the National
Academy of Sciences.
[[Page H2700]]
``(iii) Two members shall be clinicians whose practice is
primarily devoted to the treatment of individuals with autism
and other pervasive developmental disorders. The clinicians
shall be appointed by the Secretary in consultation with the
Institute of Medicine and the National Academy of Sciences.
``(iv) Two members shall be individuals who are the parents
or legal guardians of a person or persons with autism or
other pervasive developmental disorders. The individuals
shall be appointed by the Secretary in consultation with the
ex officio members under subparagraph (B) and the five
national organizations referred to in clause (ii).
``(3) Administrative support; terms of service; other
provisions.--The following apply with respect to the
Committee:
``(A) The Committee shall receive necessary and appropriate
administrative support from the Department of Health and
Human Services.
``(B) Members of the Committee shall be appointed for a
term of three years, and may serve for an unlimited number of
terms if reappointed.
``(C) The Committee shall meet no less than two times per
year.
``(D) Members of the Committee shall not receive additional
compensation for their service. Such members may receive
reimbursement for appropriate and additional expenses that
are incurred through service on the Committee which would not
have incurred had they not been a member of the Committee.
``(e) Report to Congress.--The Secretary shall prepare and
submit to the Congress, after consultation with and comment
by the advisory committee under subsection (d), an annual
report regarding the prevalence and incidence of autism and
other pervasive developmental disorders, the results of
research into the etiology of autism and other pervasive
developmental disorders, public health responses to known or
preventable causes of autism and other pervasive
developmental disorders, and the need for additional research
into promising lines of scientific inquiry.
``(f) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
Subtitle B--Expansion, Intensification, and Coordination of Autism
Activities of National Institutes of Health With Respect to Autism
SEC. 111. SHORT TITLE.
This subtitle may be cited as the ``Advancement in
Pediatric Autism Research Act of 2000''.
SEC. 112. EXPANSION, INTENSIFICATION, AND COORDINATION;
INFORMATION AND EDUCATION; INTERAGENCY
COORDINATING COMMITTEE.
Part B of title IV of the Public Health Service Act (42
U.S.C. 284 et seq.) is amended by adding at the end the
following section:
``autism
``Sec. 409C. (a) In General.--
``(1) Expansion of activities.--The Director of NIH (in
this section referred to as the `Director') shall expand,
intensify, and coordinate the activities of the National
Institutes of Health with respect to research on autism.
``(2) Administration of program; collaboration among
agencies.--The Director shall carry out this section (other
than subsection (b)) acting through the Director of the
National Institute of Mental Health and in collaboration with
any other agencies that the Director determines
appropriate.
``(b) Interagency Coordinating Committee.--
``(1) In general.--The Secretary shall ensure that there is
in operation an interagency committee to be known as the
`Autism Coordinating Committee' (referred to in this
subsection as the `Committee') to coordinate all efforts
within the Department of Health and Human Services concerning
autism, including activities carried out through the National
Institutes of Health under this section and activities
carried out through the Centers for Disease Control and
Prevention under section 317H.
``(2) Membership.--The Committee shall be composed of such
directors of the national research institutes, such directors
of centers within the Centers for Disease Control and
Prevention, and such other officials within the Department of
Health and Human Services as the Secretary determines to be
appropriate. The Committee may include representatives of
other Federal agencies that serve children with autism, such
as the Department of Education.
``(3) Meetings.--The Committee shall meet not less than
twice per year.
``(c) Centers of Excellence.--
``(1) In general.--The Director shall under subsection
(a)(1) make awards of grants and contracts to public or
nonprofit private entities to pay all or part of the cost of
planning, establishing, improving, and providing basic
operating support for centers of excellence regarding
research on autism.
``(2) Research.--Each center under paragraph (1) shall
conduct basic and clinical research into autism. Such
research should include investigations into the cause,
diagnosis, early detection, prevention, control, and
treatment of autism. These centers, as a group, shall conduct
research including but not limited to the fields of
developmental neurobiology, genetics, and psychopharmacology.
``(3) Services for patients.--A center under paragraph (1)
may expend amounts provided under such paragraph to carry out
a program to make individuals aware of opportunities to
participate as subjects in research conducted by the centers.
The program may, in accordance with such criteria as the
Director may establish, provide to such subjects referrals
for health and other services, and such patient care costs as
are required for research. The extent to which the center can
demonstrate availability and access to clinical services
shall be considered by the Director in decisions about
awarding the grants to applicants which meet the scientific
criteria for funding.
``(4) Coordination of centers; reports.--The Director
shall, as appropriate, provide for the coordination of
information among centers under paragraph (1) and ensure
regular communication between such centers, and may require
the periodic preparation of reports on the activities of the
centers and the submission of the reports to the Director.
``(5) Organization of centers.--Each center under paragraph
(1) shall use the facilities of a single institution, or be
formed from a consortium of cooperating institutions, meeting
such requirements as may be prescribed by the Director.
``(6) Number of centers; duration of support.--The Director
shall provide for the establishment of not less than five
centers under paragraph (1), subject to the extent of amounts
made available in appropriations Acts. Support of such a
center may be for a period not exceeding 5 years. Such period
may be extended for one or more additional periods not
exceeding 5 years if the operations of such center have been
reviewed by an appropriate technical and scientific peer
review group established by the Director and if such group
has recommended to the Director that such period should be
extended.
``(d) Facilitation of Research.--The Director shall under
subsection (a)(1) provide for a program under which samples
of tissues and genetic materials that are of use in research
on autism are donated, collected, preserved, and made
available for such research. The program shall be carried out
in accordance with accepted scientific and medical standards
for the donation, collection, and preservation of such
samples.
``(e) Information and Education.--
``(1) In general.--The Director shall establish and
implement a program to provide information and education on
autism to health professionals and the general public,
including information and education on advances in the
diagnosis and treatment of autism and training and continuing
education through programs for scientists, physicians, and
other health professionals who provide care for patients with
autism.
``(2) Stipends.--The Director may use amounts made
available under this section to provide stipends for health
professionals who are enrolled in training programs under
this section.
``(f) Public Input.--The Director shall under subsection
(a)(1) provide for means through which the public can obtain
information on the existing and planned programs and
activities of the National Institutes of Health with respect
to autism and through which the Director can receive comments
from the public regarding such programs and activities.
``(g) Annual Report to Congress.--The Director shall
prepare and submit to the appropriate committees of the
Congress reports regarding the activities carried out under
this section. The first report shall be submitted not later
than January 10, 2002, and subsequent reports shall be
submitted annually thereafter.
``(h) Funding.--For the purpose of carrying out this
section, there are authorized to be appropriated such sums as
may be necessary for each of the fiscal years 2001 through
2005. Such authorizations of appropriations are in addition
to any other authorizations of appropriations that are
available for such purpose.''.
TITLE II--RESEARCH AND DEVELOPMENT REGARDING FRAGILE X
SEC. 201. SHORT TITLE.
This title may be cited as the ``Fragile X Research
Breakthrough Act of 2000''.
SEC. 202. NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN
DEVELOPMENT; RESEARCH ON FRAGILE X.
Subpart 7 of part C of title IV of the Public Health
Service Act is amended by adding at the end the following
section:
``fragile x
``Sec. 452E. (a) Expansion and Coordination of Research
Activities.--The Director of the Institute, after
consultation with the advisory council for the Institute,
shall expand, intensify, and coordinate the activities of the
Institute with respect to research on the disease known as
fragile X.
``(b) Research Centers.--
``(1) In general.--The Director of the Institute, after
consultation with the advisory council for the Institute,
shall make grants to, or enter into contracts with, public or
nonprofit private entities for the development and operation
of centers to conduct research for the purposes of improving
the diagnosis and treatment of, and finding the cure for,
fragile X.
``(2) Number of centers.--In carrying out paragraph (1),
the Director of the Institute shall, to the extent that
amounts are appropriated, provide for the establishment of at
least three fragile X research centers.
``(3) Activities.--
[[Page H2701]]
``(A) In general.--Each center assisted under paragraph (1)
shall, with respect to fragile X--
``(i) conduct basic and clinical research, which may
include clinical trials of--
``(I) new or improved diagnostic methods; and
``(II) drugs or other treatment approaches; and
``(ii) conduct research to find a cure.
``(B) Fees.--A center may use funds provided under
paragraph (1) to provide fees to individuals serving as
subjects in clinical trials conducted under subparagraph (A).
``(4) Coordination among centers.--The Director of the
Institute shall, as appropriate, provide for the coordination
of the activities of the centers assisted under this section,
including providing for the exchange of information among the
centers.
``(5) Certain administrative requirements.--Each center
assisted under paragraph (1) shall use the facilities of a
single institution, or be formed from a consortium of
cooperating institutions, meeting such requirements as may be
prescribed by the Director of the Institute.
``(6) Duration of support.--Support may be provided to a
center under paragraph (1) for a period not exceeding 5
years. Such period may be extended for one or more additional
periods, each of which may not exceed 5 years, if the
operations of such center have been reviewed by an
appropriate technical and scientific peer review group
established by the Director and if such group has recommended
to the Director that such period be extended.
``(7) Authorization of appropriations.--For the purpose of
carrying out this subsection, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
SEC. 203. NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN
DEVELOPMENT; LOAN REPAYMENT PROGRAM REGARDING
RESEARCH ON FRAGILE X.
Part G of title IV of the Public Health Service Act (42
U.S.C. 288 et seq.) is amended by inserting after section
487E the following section:
``loan repayment program regarding research on fragile x
``Sec. 487F. (a) In General.--The Secretary, in
consultation with the Director of the National Institute of
Child Health and Human Development, shall establish a program
under which the Federal Government enters into contracts with
qualified health professionals (including graduate students)
who agree to conduct research regarding fragile X in
consideration of the Federal Government's agreement to repay,
for each year of such service, not more than $35,000 of the
principal and interest of the educational loans owed by such
health professionals.
``(b) Applicability of Certain Provisions.--With respect to
the National Health Service Corps Loan Repayment Program
established in subpart III of part D of title III, the
provisions of such subpart (including section 338B(g)(3))
shall, except as inconsistent with subsection (a) of this
section, apply to the program established in such subsection
in the same manner and to the same extent as such provisions
apply to the National Health Service Corps Loan Repayment
Program established in such subpart.
``(c) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
TITLE III--JUVENILE ARTHRITIS AND RELATED CONDITIONS
SEC. 301. NATIONAL INSTITUTE OF ARTHRITIS AND MUSCULOSKELETAL
AND SKIN DISEASES; RESEARCH ON JUVENILE
ARTHRITIS AND RELATED CONDITIONS.
Subpart 4 of part C of title IV of the Public Health
Service Act (42 U.S.C. 285d et seq.) is amended by inserting
after section 442 the following section:
``juvenile arthritis and related conditions
``Sec. 442A. (a) Expansion and Coordination of
Activities.--The Director of the Institute, in coordination
with the Director of the National Institute of Allergy and
Infectious Diseases, shall expand and intensify the programs
of such Institutes with respect to research and related
activities concerning juvenile arthritis and related
conditions.
``(b) Coordination.--The Directors referred to in
subsection (a) shall jointly coordinate the programs referred
to in such subsection and consult with the Arthritis and
Musculoskeletal Diseases Interagency Coordinating Committee.
``(c) Pediatric Rheumatology.--The Secretary, acting
through the appropriate agencies of the Public Health
Service, shall develop a coordinated effort to help ensure
that a national infrastructure is in place to train and
develop pediatric rheumatologists to address the health
care services requirements of children with arthritis and
related conditions.
``(d) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
SEC. 302. INFORMATION CLEARINGHOUSE.
Section 438(b) of the Public Health Service Act (42 U.S.C.
285d-3(b)) is amended by inserting ``, including juvenile
arthritis and related conditions,'' after ``diseases''.
TITLE IV--REDUCING BURDEN OF DIABETES AMONG CHILDREN AND YOUTH
SEC. 401. PROGRAMS OF CENTERS FOR DISEASE CONTROL AND
PREVENTION.
Part B of title III of the Public Health Service Act, as
amended by section 102 of this Act, is amended by inserting
after section 317H the following section:
``diabetes in children and youth
``Sec. 317I. (a) National Registry on Juvenile Diabetes.--
The Secretary , acting through the Director of the Centers
for Disease Control and Prevention, shall develop a system to
collect data on juvenile diabetes, including with respect to
incidence and prevalence, and shall establish a national
database for such data.
``(b) Type 2 Diabetes in Youth.--The Secretary, acting
through the Director of the Centers for Disease Control and
Prevention and in consultation with the Administrator of the
Health Resources and Services Administration, shall implement
a national public health effort to address type 2 diabetes in
youth, including--
``(1) enhancing surveillance systems and expanding research
to better assess the prevalence of type 2 diabetes in youth
and determine the extent to which type 2 diabetes is
incorrectly diagnosed as type 1 diabetes among children;
``(2) assisting States in establishing coordinated school
health programs and physical activity and nutrition
demonstration programs to control weight and increase
physical activity among youth; and
``(3) developing and improving laboratory methods to assist
in diagnosis, treatment, and prevention of diabetes
including, but not limited to, developing noninvasive ways to
monitor blood glucose to prevent hypoglycema and improving
existing glucometers that measure blood glucose.
``(c) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
SEC. 402. PROGRAMS OF NATIONAL INSTITUTES OF HEALTH.
Subpart 3 of part C of title IV of the Public Health
Service Act (42 U.S.C. 285c et seq.) is amended by inserting
after section 434 the following section:
``juvenile diabetes
``Sec. 434A. (a) Long-Term Epidemiology Studies.--
``(1) In general.--The Director of the Institute shall
conduct or support long-term epidemiology studies in which
individuals with type 1, or juvenile, diabetes are followed
for 10 years or more. Such studies shall, in order to provide
a valuable resource for the purposes specified in paragraph
(2), provide for complete characterization of disease
manifestations, appropriate medical history, elucidation of
environmental factors, delineation of complications, results
of usual medical treatment and a variety of other potential
valuable (such as samples of blood).
``(2) Purposes.--The purposes referred to in paragraph (1)
with respect to type 1 diabetes are the following:
``(A) Delineation of potential environmental triggers
thought precipitating or causing type 1 diabetes.
``(B) Delineation of those clinical characteristics or lab
measures associated with complications of the disease.
``(C) Potential study population to enter into clinical
trials for prevention and treatment, as well as genetic
studies.
``(b) Clinical Trial Infrastructure/Innovative Treatments
for Juvenile Diabetes.--The Secretary, acting through the
Director of the National Institutes of Health, shall support
regional clinical centers for the cure of juvenile diabetes
and shall through such centers provide for--
``(1) well-characterized population of children appropriate
for study;
``(2) well-trained clinical scientists able to conduct such
trials;
``(3) appropriate clinical settings able to house such
studies; and
``(4) appropriate statistical capability, data, safety and
other monitoring capacity.
``(c) Development of Vaccine.--The Secretary, acting
through the appropriate agencies of the Public Health
Service, shall provide for a national effort to develop a
vaccine for type 1 diabetes. Such effort shall provide for
a combination of increased efforts in research and
development of candidate vaccines, coupled with
appropriate ability to conduct large clinical trials in
children.
``(d) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
TITLE V--ASTHMA TREATMENT SERVICES FOR CHILDREN
SEC. 501. SHORT TITLE.
This title may be cited as the ``Children's Asthma Relief
Act of 2000''.
Subtitle A--Treatment
SEC. 511. GRANTS FOR CHILDREN'S ASTHMA RELIEF.
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:
[[Page H2702]]
``PART P--ADDITIONAL PROGRAMS
``SEC. 399L. CHILDREN'S ASTHMA TREATMENT GRANTS PROGRAM.
``(a) Authority To Make Grants.--
``(1) In general.--In addition to any other payments made
under this Act or title V of the Social Security Act, the
Secretary shall award grants to eligible entities to carry
out the following purposes:
``(A) To provide access to quality medical care for
children who live in areas that have a high prevalence of
asthma and who lack access to medical care.
``(B) To provide on-site education to parents, children,
health care providers, and medical teams to recognize the
signs and symptoms of asthma, and to train them in the use of
medications to treat asthma and prevent its exacerbations.
``(C) To decrease preventable trips to the emergency room
by making medication available to individuals who have not
previously had access to treatment or education in the
management of asthma.
``(D) To provide other services, such as smoking cessation
programs, home modification, and other direct and support
services that ameliorate conditions that exacerbate or induce
asthma.
``(2) Certain projects.--In making grants under paragraph
(1), the Secretary may make grants designed to develop and
expand the following projects:
``(A) Projects to provide comprehensive asthma services to
children in accordance with the guidelines of the National
Asthma Education and Prevention Program (through the National
Heart, Lung and Blood Institute), including access to care
and treatment for asthma in a community-based setting;
``(B) Projects to demonstrate mobile health care clinics
that in accordance with such guidelines provide preventive
asthma care. Such projects shall be evaluated and reports
describing the findings of the evaluations shall be submitted
to the Congress.
``(C) Projects to conduct validated asthma management
education programs for patients with asthma and their
families, including patient education regarding asthma
management, family education on asthma management, and the
distribution of materials, including displays and videos, to
reinforce concepts presented by medical teams.
``(2) Award of grants.--
``(A) Application.--
``(i) In general.--An eligible entity shall submit an
application to the Secretary for a grant under this section
in such form and manner as the Secretary may require.
``(ii) Required information.--An application submitted
under this subparagraph shall include a plan for the use of
funds awarded under the grant and such other information as
the Secretary may require.
``(B) Requirement.--In awarding grants under this section,
the Secretary shall give preference to eligible entities that
demonstrate that the activities to be carried out under this
section shall be in localities within areas of known or
suspected high prevalence of childhood asthma or high asthma-
related mortality (relative to the average asthma prevalence
rates and associated mortality rates in the United States).
Acceptable data sets to demonstrate a high prevalence of
childhood asthma or high asthma-related mortality may include
data from Federal, State, or local vital statistics, claims
data under title XIX or XXI of the Social Security Act, other
public health statistics or surveys, or other data that the
Secretary, in consultation with the Director of the Centers
for Disease Control and Prevention, deems appropriate.
``(3) Definition of eligible entity.--For purposes of this
section, the term `eligible entity' means a State agency or
other entity receiving funds under title V of the Social
Security Act, a local community, a nonprofit children's
hospital or foundation, or a nonprofit community-based
organization.
``(b) Coordination With Other Children's Programs.--An
eligible entity shall identify in the plan submitted as part
of an application for a grant under this section how the
entity will coordinate operations and activities under the
grant with--
``(1) other programs operated in the State that serve
children with asthma, including any such programs operated
under titles V, XIX, or XXI of the Social Security Act; and
``(2) one or more of the following--
``(A) the child welfare and foster care and adoption
assistance programs under parts B and E of title IV of such
Act;
``(B) the head start program established under the Head
Start Act (42 U.S.C. 9831 et seq.);
``(C) the program of assistance under the special
supplemental nutrition program for women, infants and
children (WIC) under section 17 of the Child Nutrition Act of
1966 (42 U.S.C. 1786);
``(D) local public and private elementary or secondary
schools; or
``(E) public housing agencies, as defined in section 3 of
the United States Housing Act of 1937 (42 U.S.C. 1437a).
``(c) Evaluation.--An eligible entity that receives a grant
under this section shall submit to the Secretary an
evaluation of the operations and activities carried out under
the grant that includes--
``(1) a description of the health status outcomes of
children assisted under the grant;
``(2) an assessment of the utilization of asthma-related
health care services as a result of activities carried out
under the grant;
``(3) the collection, analysis, and reporting of asthma
data according to guidelines prescribed by the Director of
the Centers for Disease Control and Prevention; and
``(4) such other information as the Secretary may require.
``(d) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
SEC. 512. TECHNICAL AND CONFORMING AMENDMENTS.
Title III of the Public Health Service Act (42 U.S.C. 241
et seq.) is amended--
(1) in part L, by redesignating section 399D as section
399A;
(2) in part M--
(A) by redesignating sections 399H through 399L as sections
399B through 399F, respectively;
(B) in section 399B (as so redesignated), in subsection
(e)--
(i) by striking ``section 399K(b)'' and inserting
``subsection (b) of section 399E''; and
(ii) by striking ``section 399C'' and inserting ``such
section'';
(C) in section 399E (as so redesignated), in subsection
(c), by striking ``section 399H(a)'' and inserting ``section
399B(a)''; and
(D) in section 399F (as so redesignated)--
(i) in subsection (a), by striking ``section 399I'' and
inserting ``section 399C'';
(ii) in subsection (a), by striking ``subsection 399J'' and
inserting ``section 399D''; and
(iii) in subsection (b), by striking ``subsection 399K''
and inserting ``section 399E'';
(3) in part N, by redesignating section 399F as section
399G; and
(4) in part O--
(A) by redesignating sections 399G through 399J as sections
399H through 399K, respectively;
(B) in section 399H (as so redesignated), in subsection
(b), by striking ``section 399H'' and inserting ``section
399I'';
(C) in section 399J (as so redesignated), in subsection
(b), by striking ``section 399G(d)'' and inserting ``section
399H(d)''; and
(D) in section 399K (as so redesignated), by striking
``section 399G(d)(1)'' and inserting ``section 399H(d)(1)''.
Subtitle B--Prevention Activities
SEC. 521. PREVENTIVE HEALTH AND HEALTH SERVICES BLOCK GRANT;
SYSTEMS FOR REDUCING ASTHMA-RELATED ILLNESSES
THROUGH URBAN COCKROACH MANAGEMENT.
Section 1904(a)(1) of the Public Health Service Act (42
U.S.C. 300w-3(a)(1)) is amended--
(1) by redesignating subparagraphs (E) and (F) as
subparagraphs (F) and (G), respectively;
(2) by adding a period at the end of subparagraph (G) (as
so redesignated);
(3) by inserting after subparagraph (D), the following:
``(E) The establishment, operation, and coordination of
effective and cost-efficient systems to reduce the prevalence
of asthma and asthma-related illnesses among urban
populations, especially children, by reducing the level of
exposure to cockroach allergen through the use of integrated
pest management, as applied to cockroaches. Amounts expended
for such systems may include the costs of building
maintenance and the costs of programs to promote community
participation in the carrying out at such sites of integrated
pest management, as applied to cockroaches. For purposes of
this subparagraph, the term `integrated pest management'
means an approach to the management of pests in public
facilities that combines biological, cultural, physical, and
chemical tools in a way that minimizes economic, health, and
environmental risks.'';
(4) in subparagraph (F) (as so redesignated), by striking
``subparagraphs (A) through (D)'' and inserting
``subparagraphs (A) through (E)''; and
(5) in subparagraph (G) (as so redesignated), by striking
``subparagraphs (A) through (E)'' and inserting
``subparagraphs (A) through (F)''.
Subtitle C--Coordination of Federal Activities
SEC. 531. COORDINATION THROUGH NATIONAL INSTITUTES OF HEALTH.
Subpart 2 of part C of title IV of the Public Health
Service Act (42 U.S.C. 285b et seq.) is amended by inserting
after section 424A the following section:
``coordination of federal asthma activities
``Sec. 424B (a) In General.--The Director of Institute
shall, through the National Asthma Education Prevention
Program Coordinating Committee--
``(1) identify all Federal programs that carry out asthma-
related activities;
``(2) develop, in consultation with appropriate Federal
agencies and professional and voluntary health organizations,
a Federal plan for responding to asthma; and
``(3) not later than 12 months after the date of the
enactment of the Children's Health Act of 2000, submit
recommendations to the appropriate committees of the Congress
on ways to strengthen and improve the coordination of asthma-
related activities of the Federal Government.
``(b) Representation of the Department of Housing and Urban
Development.--A representative of the Department of Housing
and Urban Development shall be included on the National
Asthma Education Prevention Program Coordinating Committee
for the purpose of performing the tasks described in
subsection (a).
[[Page H2703]]
``(c) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
Subtitle D--Compilation of Data
SEC. 541. COMPILATION OF DATA BY CENTERS FOR DISEASE CONTROL
AND PREVENTION.
Part B of title III of the Public Health Service Act, as
amended by section 401 of this Act, is amended by inserting
after section 317I the following section:
``compilation of data on asthma
``Sec. 317J. (a) In General.--The Secretary, acting through
the Director of the Centers for Disease Control and
Prevention and in consultation with the Director of the
National Heart, Lung, and Blood Institute, shall--
``(1) conduct local asthma surveillance activities to
collect data on the prevalence and severity of asthma and the
quality of asthma management;
``(2) compile and annually publish data on the prevalence
of children suffering from asthma in each State; and
``(3) to the extent practicable, compile and publish data
on the childhood mortality rate associated with asthma
nationally.
``(b) National Coordinating Committee.--The Director of the
National Heart, Lung, and Blood Institute shall in carrying
out subsection (a) consult with the National Asthma Education
Prevention Program Coordinating Committee.
``(c) Collaborative Efforts.--The activities described in
subsection (a)(1) may be conducted in collaboration with
eligible entities awarded a grant under section 399L.''.
TITLE VI--BIRTH DEFECTS PREVENTION ACTIVITIES
Subtitle A--Folic Acid
SEC. 601. SHORT TITLE.
This subtitle may be cited as the ``Folic Acid Promotion
and Birth Defects Prevention Act of 2000''.
SEC. 602. PROGRAM REGARDING EFFECTS OF FOLIC ACID IN
PREVENTION OF BIRTH DEFECTS.
Part B of title III of the Public Health Service Act, as
amended by section 541 of this Act, is amended by inserting
after section 317J the following section:
``effects of folic acid in prevention of birth defects
``Sec. 317K. (a) In General.--The Secretary, acting through
the Director of the Centers for Disease Control and
Prevention, shall carry out a program (directly or through
grants or contracts) for the following purposes:
``(1) To provide education and training for health
professionals and the general public for purposes of
explaining the effects of folic acid in preventing birth
defects and for purposes of encouraging each woman of
reproductive capacity (whether or not planning a pregnancy)
to consume on a daily basis a dietary supplement that
provides an appropriate level of folic acid.
``(2) To conduct research with respect to such education
and training, including identifying effective strategies for
increasing the rate of consumption of folic acid by women of
reproductive capacity.
``(3) To conduct research to increase the understanding of
the effects of folic acid in preventing birth defects,
including understanding with respect to cleft lip, cleft
palate, and heart defects.
``(4) To provide for appropriate epidemiological activities
regarding folic acid and birth defects, including
epidemiological activities regarding neural tube defects.
``(b) Consultations With States and Private Entities.--In
carrying out subsection (a), the Secretary shall consult with
the States and with other appropriate public or private
entities, including national nonprofit private organizations,
health professionals, and providers of health insurance and
health plans.
``(c) Technical Assistance.--The Secretary may (directly or
through grants or contracts) provide technical assistance to
public and nonprofit private entities in carrying out the
activities described in subsection (a).
``(d) Evaluations.--The Secretary shall (directly or
through grants or contracts) provide for the evaluation of
activities under subsection (a) in order to determine the
extent to which such activities have been effective in
carrying out the purposes of the program under such
subsection, including the effects on various demographic
populations. Methods of evaluation under the preceding
sentence may include surveys of knowledge and attitudes on
the consumption of folic acid and on blood folate levels.
Such methods may include complete and timely monitoring of
infants who are born with neural tube defects.
``(e) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
Subtitle B--National Center on Birth Defects and Developmental
Disabilities
SEC. 611. NATIONAL CENTER ON BIRTH DEFECTS AND
DEVELOPMENTAL DISABILITIES.
Section 317C of the Public Health Service Act (42 U.S.C.
247b-4) is amended--
(1) by striking the heading for the section and inserting
the following:
``national center on birth defects and developmental disabilities'';
(2) by striking ``Sec. 317C. (a)'' and all that follows
through the end of subsection (a) and inserting the
following:
``Sec. 317C. (a) In General.--
``(1) National center.--There is established within the
Centers for Disease Control and Prevention a center to be
known as the National Center on Birth Defects and
Developmental Disabilities (referred to in this section as
the `Center'), which shall be headed by a director appointed
by the Director of the Centers for Disease Control and
Prevention.
``(2) General duties.--The Secretary shall carry out
programs--
(A) to collect, analyze, and make available data on birth
defects (in a manner that facilitates compliance with
subsection (d)(2)), including data on the causes of such
defects and on the incidence and prevalence of such defects;
(B) to operate regional centers for the conduct of applied
epidemiological research on the prevention of such defects;
and
(C) to provide information and education to the public on
the prevention of such defects.
``(3) Folic acid.--The Secretary shall carry out section
317K through the Center.
``(4) Certain programs.--
``(A) Transfers.--All programs and functions described in
subparagraph (B) are transferred to the Center, effective on
the date of the enactment of the Children's Health Act of
2000.
``(B) Relevant programs.--The programs and functions
described in this subparagraph are all programs and functions
that--
``(i) relate to birth defects, folic acid, cerebral palsy,
mental retardation, child development, newborn screening,
autism, fragile X syndrome, fetal alcohol syndrome, pediatric
genetics, or disability prevention; and
``(ii) were carried out through the National Center for
Environmental Health as of the day before the date of the
enactment of the Act referred to in subparagraph (A).
``(C) Related transfers.--Personnel employed in connection
with the programs and functions specified in subparagraph
(B), and amounts available for carrying out the programs and
functions, are transferred to the Center, effective on the
date of the enactment of the Act referred to in subparagraph
(A). Such transfer of amounts does not affect the period of
availability of the amounts, or the availability of the
amounts with respect to the purposes for which the amounts
may be expended.''; and
(3) in subsection (b)(1), in the matter preceding
subparagraph (A), by striking ``(a)(1)'' and inserting
``(a)(2)(A)''.
TITLE VII--EARLY DETECTION, DIAGNOSIS, AND TREATMENT REGARDING HEARING
LOSS IN INFANTS
SEC. 701. SHORT TITLE.
This title may be cited as the ``Newborn and Infant Hearing
Screening and Intervention Act of 2000''.
SEC. 702. PURPOSES.
The purposes of this title are to clarify the authority
within the Public Health Service Act to authorize statewide
newborn and infant hearing screening, evaluation and
intervention programs and systems, technical assistance, a
national applied research program, and interagency and
private sector collaboration for policy development, in order
to assist the States in making progress toward the following
goals:
(1) All babies born in hospitals in the United States and
its territories should have a hearing screening before
leaving the birthing facility. Babies born in other countries
and residing in the United States via immigration or adoption
should have a hearing screening as early as possible.
(2) All babies who are not born in hospitals in the United
States and its territories should have a hearing screening
within the first 3 months of life.
(3) Appropriate audiologic and medical evaluations should
be conducted by 3 months for all newborns and infants
suspected of having hearing loss to allow appropriate
referral and provisions for audiologic rehabilitation,
medical and early intervention before the age of 6 months.
(4) All newborn and infant hearing screening programs and
systems should include a component for audiologic
rehabilitation, medical and early intervention options that
ensures linkage to any new and existing state-wide systems of
intervention and rehabilitative services for newborns and
infants with hearing loss.
(5) Public policy in regard to newborn and infant hearing
screening and intervention should be based on applied
research and the recognition that newborns, infants,
toddlers, and children who are deaf or hard-of-hearing have
unique language, learning, and communication needs, and
should be the result of consultation with pertinent public
and private sectors.
SEC. 703. PROGRAMS OF HEALTH RESOURCES AND SERVICES
ADMINISTRATION, CENTERS FOR DISEASE CONTROL AND
PREVENTION, AND NATIONAL INSTITUTES OF HEALTH.
Part P of title III of the Public Health Service Act, as
added by section 511 of this Act, is amended by adding at the
end the following section:
``SEC. 399M. EARLY DETECTION, DIAGNOSIS, AND TREATMENT
REGARDING HEARING LOSS IN INFANTS.
``(a) Statewide Newborn and Infant Hearing Screening,
Evaluation and Intervention Programs and Systems.--The
Secretary, acting through the Administrator of
[[Page H2704]]
the Health Resources and Services Administration, shall make
awards of grants or cooperative agreements to develop
statewide newborn and infant hearing screening, evaluation
and intervention programs and systems for the following
purposes:
``(1) To develop and monitor the efficacy of state-wide
newborn and infant hearing screening, evaluation and
intervention programs and systems. Early intervention
includes referral to schools and agencies, including
community, consumer, and parent-based agencies and
organizations and other programs mandated by part C of the
Individuals with Disabilities Education Act, which offer
programs specifically designed to meet the unique language
and communication needs of deaf and hard of hearing newborns,
infants, toddlers, and children.
``(2) To collect data on statewide newborn and infant
hearing screening, evaluation and intervention programs and
systems that can be used for applied research, program
evaluation and policy development.
``(b) Technical Assistance, Data Management, and Applied
Research.--
``(1) Centers for disease control and prevention.--The
Secretary, acting through the Director of the Centers for
Disease Control and Prevention, shall make awards of grants
or cooperative agreements to provide technical assistance to
State agencies to complement an intramural program and to
conduct applied research related to newborn and infant
hearing screening, evaluation and intervention programs and
systems. The program shall develop standardized procedures
for data management and program effectiveness and costs, such
as--
``(A) to ensure quality monitoring of newborn and infant
hearing loss screening, evaluation, and intervention programs
and systems;
``(B) to provide technical assistance on data collection
and management;
``(C) to study the costs and effectiveness of newborn and
infant hearing screening, evaluation and intervention
programs and systems conducted by State-based programs in
order to answer issues of importance to state and national
policymakers;
``(D) to identify the causes and risk factors for
congenital hearing loss;
``(E) to study the effectiveness of newborn and infant
hearing screening, audiologic and medical evaluations and
intervention programs and systems by assessing the health,
intellectual and social developmental, cognitive, and
language status of these children at school age; and
``(F) to promote the sharing of data regarding early
hearing loss with State-based birth defects and developmental
disabilities monitoring programs for the purpose of
identifying previously unknown causes of hearing loss.
``(2) National institutes of health.--The Director of the
National Institutes of Health, acting through the Director of
the National Institute on Deafness and Other Communication
Disorders, shall for purposes of this section, continue a
program of research and development on the efficacy of new
screening techniques and technology, including clinical
studies of screening methods, studies on efficacy of
intervention, and related research.
``(c) Coordination and Collaboration.--
``(1) In general.--In carrying out programs under this
section, the Administrator of the Health Resources and
Services Administration, the Director of the Centers for
Disease Control and Prevention, and the Director of the
National Institutes of Health shall collaborate and consult
with other Federal agencies; State and local agencies,
including those responsible for early intervention services
pursuant to title XIX of the Social Security Act (Medicaid
Early and Periodic Screening, Diagnosis and Treatment
Program); title XXI of the Social Security Act (State
Children's Health Insurance Program); title V of the
Social Security Act (Maternal and Child Health Block Grant
Program); and part C of the Individuals with Disabilities
Education Act; consumer groups of and that serve
individuals who are deaf and hard-of-hearing and their
families; appropriate national medical and other health
and education specialty organizations; persons who are
deaf and hard-of-hearing and their families; other
qualified professional personnel who are proficient in
deaf or hard-of-hearing children's language and who
possess the specialized knowledge, skills, and attributes
needed to serve deaf and hard-of-hearing newborns,
infants, toddlers, children, and their families; third-
party payers and managed care organizations; and related
commercial industries.
``(2) Policy development.--The Administrator of the Health
Resources and Services Administration, the Director of the
Centers for Disease Control and Prevention, and the Director
of the National Institutes of Health shall coordinate and
collaborate on recommendations for policy development at the
Federal and State levels and with the private sector,
including consumer, medical and other health and education
professional-based organizations, with respect to newborn and
infant hearing screening, evaluation and intervention
programs and systems.
``(3) State early detection, diagnosis, and intervention
programs and systems; data collection.--The Administrator of
the Health Resources and Services Administration and the
Director of the Centers for Disease Control and Prevention
shall coordinate and collaborate in assisting States to
establish newborn and infant hearing screening, evaluation
and intervention programs and systems under subsection (a)
and to develop a data collection system under subsection (b).
``(d) Rule of Construction.--Nothing in this section shall
be construed to preempt any State law.
``(e) Definitions.--For purposes of this section:
``(1) The term `audiologic evaluation' refers to procedures
to assess the status of the auditory system; to establish the
site of the auditory disorder; the type and degree of hearing
loss, and the potential effects of hearing loss on
communication; and to identify appropriate treatment and
referral options. Referral options should include linkage to
State coordinating agencies under part C of the Individuals
with Disabilities Education Act or other appropriate
agencies, medical evaluation, hearing aid/sensory aid
assessment, audiologic rehabilitation treatment, national and
local consumer, self-help, parent, and education
organizations, and other family-centered services.
``(2) The terms `audiologic rehabilitation' and `audiologic
intervention' refer to procedures, techniques, and
technologies to facilitate the receptive and expressive
communication abilities of a child with hearing loss.
``(3) The term `early intervention' refers to providing
appropriate services for the child with hearing loss,
including nonmedical services, and ensuring that families of
the child are provided comprehensive, consumer-oriented
information about the full range of family support, training,
information services, communication options and are given the
opportunity to consider the full range of educational and
program placements and options for their child.
``(4) The term `medical evaluation by a physician' refers
to key components including history, examination, and medical
decision making focused on symptomatic and related body
systems for the purpose of diagnosing the etiology of hearing
loss and related physical conditions, and for identifying
appropriate treatment and referral options.
``(5) The term `medical intervention' refers to the process
by which a physician provides medical diagnosis and direction
for medical and/or surgical treatment options of hearing loss
and/or related medical disorder associated with hearing loss.
``(6) The term `newborn and infant hearing screening'
refers to objective physiologic procedures to detect possible
hearing loss and to identify newborns and infants who, after
rescreening, require further audiologic and medical
evaluations.
``(f) Authorization of Appropriations.--
``(1) Statewide newborn and infant hearing screening,
evaluation and intervention programs and systems.--For the
purpose of carrying out subsection (a), there are authorized
to be appropriated to the Health Resources and Services
Administration such sums as may be necessary for each of the
fiscal years 2001 through 2005.
``(2) Technical assistance, data management, and applied
research; centers for disease control and prevention.--For
the purpose of carrying out subsection (b)(1), there are
authorized to be appropriated to the Centers for Disease
Control and Prevention such sums as may be necessary for each
of the fiscal years 2001 through 2005.
``(3) Technical assistance, data management, and applied
research; national institute on deafness and other
communication disorders.--For the purpose of carrying out
subsection (b)(2), there are authorized to be appropriated to
the National Institute on Deafness and Other Communication
Disorders such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
TITLE VIII--CHILDREN AND EPILEPSY
SEC. 801. NATIONAL PUBLIC HEALTH CAMPAIGN ON EPILEPSY;
SEIZURE DISORDER DEMONSTRATION PROJECTS IN
MEDICALLY UNDERSERVED AREAS.
Subpart I of part D of title III of the Public Health
Service Act (42 U.S.C. 254b) is amended by adding at the end
the following section:
``SEC. 330E. EPILEPSY; SEIZURE DISORDER.
``(a) National Public Health Campaign.--
``(1) In general.--The Secretary shall develop and
implement public health surveillance, education, research,
and intervention strategies to improve the lives of persons
with epilepsy, with a particular emphasis on children. Such
projects may be carried out by the Secretary directly and
through awards of grants or contracts to public or nonprofit
private entities. The Secretary may directly or through such
awards provide technical assistance with respect to the
planning, development, and operation of such projects.
``(2) Certain activities.--Activities under paragraph (1)
shall include--
``(A) expanding current surveillance activities through
existing monitoring systems and improving registries that
maintain data on individuals with epilepsy, including
children;
``(B) enhancing research activities on patient management
and control of epilepsy;
``(C) implementing public and professional information and
education programs regarding epilepsy, including initiatives
which promote effective management and control of the disease
through children's programs which are targeted to parents,
schools, daycare providers, patients;
``(D) undertaking educational efforts with the media,
providers of health care, schools and others regarding
stigmas and secondary disabilities related to epilepsy and
seizures, and also its affects on youth;
[[Page H2705]]
``(E) utilizing and expanding partnerships with
organizations with experience addressing the health and
related needs of people with disabilities; and
``(F) other activities the Secretary deems appropriate.
``(3) Coordination of activities.--The Secretary shall
ensure that activities under this subsection are coordinated
as appropriate with other agencies of the Public Health
Service that carry out activities regarding epilepsy and
seizure.
``(b) Seizure Disorder; Demonstration Projects in Medically
Underserved Areas.--
``(1) In general.--The Secretary, acting through the
Administrator of the Health Resources and Services
Administration, may make grants to States and local
governments for the purpose of carrying out demonstration
projects to improve access to health and other services
regarding seizures to encourage early detection and treatment
in children and others residing in medically underserved
areas.
``(2) Application for grant.--The Secretary may make a
grant under paragraph (1) only if the application for the
grant is submitted to the Secretary and the application is in
such form, is made in such matter, and contains such
agreements, assurances, and information as the Secretary
determines to be necessary to carry out this subsection.
``(c) Definitions.--For purposes of this section:
``(1) The term ``epilepsy'' refers to a chronic and serious
neurological condition which produces excessive electrical
discharges in the brain causing recurring seizures affecting
all life activities. The Secretary may revise the definition
of such term as the Secretary.
``(2) The term ``medically underserved'' has the meaning
applicable under section 799B(6).
``(d) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
TITLE IX--SAFE MOTHERHOOD; INFANT HEALTH PROMOTION
Subtitle A--Safe Motherhood Monitoring and Prevention Research
SEC. 901. SHORT TITLE.
This title may be cited as the ``Safe Motherhood Monitoring
and Prevention Research Act''.
SEC. 902. MONITORING; PREVENTION RESEARCH AND OTHER
ACTIVITIES.
Part B of title III of the Public Health Service Act, as
amended by section 602 of this Act, is amended by inserting
after section 317K the following section:
``safe motherhood
``Sec. 317L. (a) Monitoring.--
``(1) Purpose.--The purpose of this subsection is to
develop monitoring systems at the local, State, and national
level to better understand the burden of maternal
complications and mortality and to decrease the disparities
among population at risk of death and complications from
pregnancy.
``(2) Activities.--For the purpose described in paragraph
(1), the Secretary may carry out the following activities:
``(A) the Secretary may establish and implement a national
monitoring and surveillance program to identify and promote
the investigation of deaths and severe complications that
occur during pregnancy.
``(B) The Secretary may expand the Pregnancy Risk
Assessment Monitoring System to provide surveillance and
collect data in each of the 50 States.
``(C) The Secretary may expand the Maternal and Child
Health Epidemiology Program to provide technical support,
financial assistance, or the time-limited assignment of
senior epidemiologists to maternal and child health programs
in each of the 50 States.
``(b) Prevention Research.--
``(1) Purpose.--The purpose of this subsection is to
provide the Secretary with the authority to further expand
research concerning risk factors, prevention strategies, and
the roles of the family, health care providers and the
community in safe motherhood.
``(2) Research.--The Secretary may carry out activities to
expand research relating to--
``(A) encouraging preconception counseling, especially for
at risk populations such as diabetics;
``(B) the identification of critical components of prenatal
delivery and postpartum care;
``(C) the identification of outreach and support services,
such as folic acid education, that are available for pregnant
women;
``(D) the identification of women who are at high risk for
complications;
``(E) preventing preterm delivery;
``(F) preventing urinary tract infections;
``(G) preventing unnecessary caesarean sections;
``(H) an examination of the higher rates of maternal
mortality among African American women;
``(I) an examination of the relationship between domestic
violence and maternal complications and mortality;
``(J) preventing smoking, alcohol and illegal drug usage
before, during and after pregnancy;
``(K) preventing infections that cause maternal and infant
complications; and
``(L) other areas determined appropriate by the Secretary.
``(c) Prevention Programs.--
``(1) In general.--The Secretary may carry out activities
to promote safe motherhood, including--
``(A) public education campaigns on healthy pregnancies and
the building of partnerships with outside organizations
concerned about safe motherhood;
``(B) education programs for physicians, nurses and other
health care providers; and
``(C) activities to promote community support services for
pregnant women.
``(d) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
Subtitle B--Pregnant Mothers and Infants Health Promotion
SEC. 911. SHORT TITLE.
This subtitle may be cited as the ``Pregnant Mothers and
Infants Health Protection Act''.
SEC. 912. PROGRAMS REGARDING PRENATAL AND POSTNATAL HEALTH.
Part B of title III of the Public Health Service Act, as
amended by section 902 of this Act, is amended by inserting
after section 317L the following section:
``prenatal and postnatal health
``Sec. 317M. (a) In General.--The Secretary, acting through
the Director of the Centers for Disease Control and
Prevention, shall carry out programs--
``(1) to collect, analyze, and make available data on
prenatal smoking, alcohol and illegal drug usage, including
data on the implications of such activities and on the
incidence and prevalence of such activities and their
implications;
``(2) to conduct applied epidemiological research on the
prevention of prenatal and postnatal smoking, alcohol and
illegal drug usage;
``(3) to support, conduct, and evaluate the effectiveness
of educational and cessation programs; and
``(4) to provide information and education to the public on
the prevention and implications of prenatal and postnatal
smoking, alcohol and illegal drug usage.
``(b) Grants.--In carrying out subsection (a), the
Secretary may award grants to and enter into contracts with
States, local governments, scientific and academic
institutions, Federally qualified health centers, and other
public and nonprofit entities, and may provide technical and
consultative assistance to such entities.
``(c) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
TITLE X--REVISION AND EXTENSION OF PROGRAMS
Subtitle A--Pediatric Research Initiative
SEC. 1001. SHORT TITLE.
This subtitle may be cited as the ``Pediatric Research
Initiative Act of 2000''.
SEC. 1002. ESTABLISHMENT OF PEDIATRIC RESEARCH
INITIATIVE.
Part B of title IV of the Public Health Service Act, as
amended by section 112 of this Act, is amended by adding at
the end the following:
``pediatric research initiative
``Sec. 409D. (a) Establishment.--The Secretary shall
establish within the Office of the Director of NIH a
Pediatric Research Initiative (referred to in this section as
the `Initiative'). The Initiative shall be headed by the
Director of NIH.
``(b) Purpose.--The purpose of the Initiative is to provide
funds to enable the Director of NIH to provide--
``(1) increased support for pediatric biomedical research
within the National Institutes of Health to ensure that the
expanding opportunities for advancement in scientific
investigations and care for children are realized;
``(2) enhanced collaborative efforts among the Institutes
to support multidisciplinary research in the areas that the
Director deems most promising; and
``(3) the development of adequate pediatric clinical trials
and pediatric use information to promote the safer and more
effective use of prescription drugs in the pediatric
population.
``(c) Duties.--In carrying out subsection (b), the Director
of NIH shall--
``(1) consult with the Director of the National Institute
of Child Health and Human Development and the Directors of
the other national research institutes, in considering their
requests for new or expanded pediatric research efforts, and
consult with the Administrator of the Health Resources and
Services Administration and other advisors as the Director
determines to be appropriate;
``(2) have broad discretion in the allocation of any
Initiative assistance among the Institutes, among types of
grants, and between basic and clinical research so long as
the--
``(A) assistance is directly related to the illnesses and
conditions of children; and
``(B) assistance is extramural in nature; and
``(3) be responsible for the oversight of any newly
appropriated Initiative funds and annually report to Congress
and the public on the extent of the total extramural support
for pediatric research across the NIH, including the specific
support and research awards allocated through the Initiative.
``(d) Authorization.--For the purpose of carrying out this
section, there are authorized to be appropriated such sums as
may be
[[Page H2706]]
necessary for each of the fiscal years 2001 through 2005.
``(e) Transfer of Funds.--The Director of NIH may transfer
amounts appropriated under this section to any of the
Institutes for a fiscal year to carry out the purposes of the
Initiative under this section.''.
SEC. 1003. INVESTMENT IN TOMORROW'S PEDIATRIC
RESEARCHERS.
Subpart 7 of part C of title IV of the Public Health
Service Act, as amended by section 921 of this Act, is
amended by adding at the end the following:
``investment in tomorrow's pediatric researchers
``Sec. 452G. (a) In General.--In order to ensure the future
supply of researchers dedicated to the care and research
needs of children, the Director of the Institute, after
consultation with the Administrator of the Health Resources
and Services Administration, shall support activities to
provide for--
``(1) an increase in the number and size of institutional
training grants to pediatric departments of medical schools
and to children's hospitals; and
``(2) an increase in the number of career development
awards for health professionals who are in pediatric
specialties or subspecialties and intend to build careers in
pediatric basic and clinical research.
``(b) Authorization.--For the purpose of carrying out this
section, there are authorized to be appropriated such sums as
may be necessary for each of the fiscal years 2001 through
2005.''.
Subtitle B--Other Programs
SEC. 1011. CHILDHOOD IMMUNIZATIONS.
Section 317(j)(1) of the Public Health Service Act (42
U.S.C. 247b(j)(1)) is amended in the first sentence by
striking ``1998'' and all that follows and inserting ``1998
through 2003.''.
SEC. 1012. SCREENINGS, REFERRALS, AND EDUCATION REGARDING
LEAD POISONING.
Section 317A(l)(1) of the Public Health Service Act (42
U.S.C. 247b-1(l)(1)) is amended by striking ``1994'' and all
that follows and inserting ``1994 through 2003.''.
TITLE XI--CHILDHOOD SKELETAL MALIGNANCIES
SEC. 1101. PROGRAMS OF CENTERS FOR DISEASE CONTROL AND
PREVENTION AND NATIONAL INSTITUTES OF HEALTH.
Part P of title III of the Public Health Service Act, as
amended by section 703 of this Act, is amended by adding at
the end the following section:
``SEC. 399N. CHILDHOOD SKELETAL MALIGNANCIES.
``(a) In General.--The Secretary, acting as appropriate
through the Director of the Centers for Disease Control and
Prevention and the Director of the National Institutes of
Health, shall study environmental and other risk factors for
childhood skeletal cancers, and carry out projects to improve
outcomes among children with childhood skeletal cancers and
resultant secondary conditions, including limb loss. Such
projects shall be carried out by the Secretary directly and
through awards of grants or contracts to public or nonprofit
entities.
``(b) Certain Activities.--Activities under subsection (a)
include--
``(1) the expansion of current demographic data collection
and population surveillance efforts to include childhood
skeletal cancers nationally;
``(2) the development of a uniform reporting system under
which treating physicians, hospitals, clinics, and states
report the diagnosis of childhood skeletal cancers, including
relevant associated epidemiological data; and
``(3) support for the National Limb Loss Information Center
to address, in part, the primary and secondary needs of
persons who experience childhood skeletal cancers in order to
prevent or minimize the disabling nature of these cancers.
``(c) Coordination of Activities.--The Secretary shall
assure that activities under this section are coordinated as
appropriate with other agencies of the Public Health Service
that carry out activities focused on childhood cancers and
limb loss.
``(d) Definition.--For purposes of this section, the term
`childhood skeletal cancer' refers to any malignancy
originating in the connective tissue of a person before
skeletal maturity including the appendicular and axial
skeleton. The Secretary may for purposes of this section
revise the definition of such term to the extent determined
by the Secretary to be appropriate.
``(e) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
TITLE XII--ADOPTION AWARENESS
Subtitle A--Infant Adoption Awareness
SEC. 1201. SHORT TITLE.
This subtitle may be cited as the ``Infant Adoption
Awareness Act of 2000''.
SEC. 1202. GRANTS REGARDING INFANT ADOPTION AWARENESS.
Subpart I of part D of title III of the Public Health
Service Act, as amended by section 801 of this Act, is
amended by adding at the end the following section:
``SEC. 330F. CERTAIN SERVICES FOR PREGNANT WOMEN.
``(a) Infant Adoption Awareness.--
``(1) In general.--The Secretary shall make grants to
national, regional, or local adoption organizations for the
purpose of developing and implementing programs to train the
designated staff of eligible health centers in providing
adoption information and referrals to pregnant women on an
equal basis with all other courses of action included in
nondirective counseling.
``(2) Best-practices guidelines.--
``(A) In general.--A condition for the receipt of a grant
under paragraph (1) is that the adoption organization
involved agree that, in providing training under such
paragraph, the organization will follow the guidelines
developed under subparagraph (B).
``(B) Process for development of guidelines.--
``(i) In general.--The Secretary shall establish and
supervise a process described in clause (ii) in which the
participants are--
``(I) an appropriate number and variety of adoption
organizations that, as a group, have expertise in all models
of adoption practice and that represent all members of the
adoption triad (birth mother, infant, and adoptive parent);
and
``(II) affected public health entities.
``(ii) Description of process.--The process referred to in
clause (i) is a process in which the participants described
in such clause collaborate to develop best-practices
guidelines on the provision of adoption information and
referrals to pregnant women on an equal basis with all other
courses of action included in nondirective counseling.
``(iii) Date certain for development.--The Secretary shall
ensure that the guidelines described in clause (ii) are
developed not later than 180 days after the date of the
enactment of the Children's Health Act of 2000.
``(C) Relation to authority for grants.--The Secretary may
not make any grant under paragraph (1) before the date on
which the guidelines under subparagraph (B) are developed.
``(3) Use of grant.--
``(A) In general.--With respect to a grant under paragraph
(1)--
``(i) an adoption organization may expend the grant to
carry out the programs directly or through grants to or
contracts with other adoption organizations;
``(ii) the purposes for which the adoption organization
expends the grant may include the development of a training
curriculum, consistent with the guidelines developed under
paragraph (2)(B); and
``(iii) a condition for the receipt of the grant is that
the adoption organization agree that, in providing training
for the designated staff of eligible health centers, such
organization will make reasonable efforts to ensure that the
individuals who provide the training are individuals who are
knowledgeable on the process for adopting a child and are
experienced in providing adoption information and referrals
in the geographic areas in which the eligible health centers
are located, and that the designated staff receive the
training in such areas.
``(B) Rule of construction regarding training of
trainers.--With respect to individuals who under a grant
under paragraph (1) provide training for the designated staff
of eligible health centers (referred to in this subparagraph
as `trainers'), subparagraph (A)(iii) may not be construed as
establishing any limitation regarding the geographic area in
which the trainers receive instruction in being such
trainers. A trainer may receive such instruction in a
different geographic area than the area in which the trainer
trains (or will train) the designated staff of eligible
health centers.
``(4) Adoption organizations; eligible health centers;
other definitions.--For purposes of this section:
``(A) The term `adoption organization' means a national,
regional, or local organization--
``(i) among whose primary purposes are adoption;
``(ii) that is knowledgeable on the process for adopting a
child and on providing adoption information and referrals to
pregnant women; and
``(iii) that is a nonprofit private entity.
``(B) The term `designated staff', with respect to an
eligible health center, means staff of the center who provide
pregnancy or adoption information and referrals (or will
provide such information and referrals after receiving
training under a grant under paragraph (1)).
``(C) The term `eligible health centers' means public and
nonprofit private entities that provide health-related
services to pregnant women.
``(5) Training for certain eligible health centers.--A
condition for the receipt of a grant under paragraph (1) is
that the adoption organization involved agree to make
reasonable efforts to ensure that the eligible health centers
with respect to which training under the grant is provided
include--
``(A) eligible health centers that receive grants under
section 1001 (relating to voluntary family planning
projects);
``(B) eligible health centers that receive grants under
section 330 (relating to community health centers, migrant
health centers, and centers regarding homeless individuals
and residents of public housing); and
``(C) eligible health centers that receive grants under
this Act for the provision of services in schools.
``(6) Participation of certain eligible health clinics.--In
the case of eligible health centers that receive grants under
section 330 or 1001:
``(A) Within a reasonable period after the Secretary begins
making grants under paragraph (1), the Secretary shall
provide eligible
[[Page H2707]]
health centers with complete information about the training
available from organizations receiving grants under such
paragraph. The Secretary shall make reasonable efforts to
encourage eligible health centers to arrange for designated
staff to participate in such training.
``(B) All costs of such centers in obtaining the training
shall be reimbursed by the organization that provides the
training, using grants under paragraph (1).
``(C) Not later than one year after the date of the
enactment the Children's Health Act of 2000, the Secretary
shall submit to the appropriate committees of the Congress a
report evaluating the extent to which adoption information,
and referral upon request, is provided by eligible health
centers. Within a reasonable time after training under this
section is initiated, the Secretary shall submit to the
appropriate committees of the Congress a report evaluating
the extent to which adoption information, and referral upon
request, is provided by eligible health centers in order to
determine the effectiveness of such training. In preparing
the reports required by this subparagraph, the Secretary
shall in no respect interpret the provisions of this section
to allow any interference in the provider-patient
relationship, any breach of patient confidentiality, or any
monitoring or auditing of the counseling process or patient
records which breaches patient confidentiality or reveals
patient identity.
``(b) Application for Grant.--The Secretary may make a
grant under subsection (a) only if an application for the
grant is submitted to the Secretary and the application is in
such form, is made in such manner, and contains such
agreements, assurances, and information as the Secretary
determines to be necessary to carry out this section.
``(c) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
Subtitle B--Special Needs Adoption Awareness
SEC. 1211. SPECIAL NEEDS ADOPTION PROGRAMS; PUBLIC AWARENESS
CAMPAIGN AND OTHER ACTIVITIES.
Subpart I of part D of title III of the Public Health
Service Act, as amended by section 1202 of this Act, is
amended by adding at the end the following section:
``SEC. 330G. SPECIAL NEEDS ADOPTION PROGRAMS; PUBLIC
AWARENESS CAMPAIGN AND OTHER ACTIVITIES.
``(a) Special Needs Adoption Awareness Campaign.--
``(1) In general.--The Secretary shall, through making
grants to nonprofit private entities, provide for the
planning, development, and carrying out of a national
campaign to provide information to the public regarding the
adoption of children with special needs.
``(2) Input on planning and development.--In providing for
the planning and development of the national campaign under
paragraph (1), the Secretary shall provide for input from a
number and variety of adoption organizations throughout the
States in order that the full national diversity of interests
among adoption organizations is represented in the planning
and development of the campaign.
``(3) Certain features.--With respect to the national
campaign under paragraph (1):
``(A) The campaign shall be directed at various
populations, taking into account as appropriate differences
among geographic regions, and shall be carried out in the
language and cultural context that is most appropriate to the
population involved.
``(B) The means through which the campaign may be carried
out include--
``(i) placing public service announcements on television,
radio, and billboards; and
``(ii) providing information through means that the
Secretary determines will reach individuals who are most
likely to adopt children with special needs.
``(C) The campaign shall provide information on the
subsidies and supports that are available to individuals
regarding the adoption of children with special needs.
``(D) The Secretary may provide that the placement of
public service announcements, and the dissemination of
brochures and other materials, is subject to review by the
Secretary.
``(4) Matching Requirement.--
``(A) In general.--With respect to the costs of the
activities to be carried out by an entity pursuant to
paragraph (1), a condition for the receipt of a grant under
such paragraph is that the entity agree to make available
(directly or through donations from public or private
entities) non-Federal contributions toward such costs in an
amount that is not less than 25 percent of such costs.
``(B) Determination of amount contributed.--Non-Federal
contributions under subparagraph (A) may be in cash or in
kind, fairly evaluated, including plant, equipment, or
services. Amounts provided by the Federal Government, or
services assisted or subsidized to any significant extent by
the Federal Government, may not be included in determining
the amount of such contributions.
``(b) National Resources Program.--The Secretary shall
(directly or through grant or contract) carry out a program
that, through toll-free telecommunications, makes available
to the public information regarding the adoption of children
with special needs. Such information shall include the
following:
``(1) A list of national, State, and regional organizations
that provide services regarding such adoptions, including
exchanges and other information on communicating with the
organizations. The list shall represent the full national
diversity of adoption organizations.
``(2) Information beneficial to individuals who adopt such
children, including lists of support groups for adoptive
parents and other postadoptive services.
``(c) Other Programs.--With respect to the adoption of
children with special needs, the Secretary shall make
grants--
``(1) to provide assistance to support groups for adoptive
parents, adopted children, and siblings of adopted children;
and
``(2) to carry out studies to identify the reasons for
adoption disruptions.
``(d) Application for Grant.--The Secretary may make an
award of a grant or contract under this section only if an
application for the award is submitted to the Secretary and
the application is in such form, is made in such manner, and
contains such agreements, assurances, and information as the
Secretary determines to be necessary to carry out this
section.
``(e) Funding.--For the purpose of carrying out this
section, there are authorized to be appropriated such sums as
may be necessary for each of the fiscal years 2001 through
2005.''.
TITLE XIII--TRAUMATIC BRAIN INJURY
SEC. 1301. SHORT TITLE.
This title may be cited as the ``Traumatic Brain Injury Act
Amendments of 2000''.
SEC. 1302. PROGRAMS OF CENTERS FOR DISEASE CONTROL AND
PREVENTION.
(a) In General.--Section 393A of the Public Health Service
Act (42 U.S.C. 280b-1b) is amended--
(1) in subsection (b)--
(A) in paragraph (1), by striking ``and'' at the end;
(B) in paragraph (2), by striking the period and inserting
``; and''; and
(C) by adding at the end the following:
``(3) the implementation of a national education and
awareness campaign regarding such injury (in conjunction with
the program of the Secretary regarding health-status goals
for 2010, commonly referred to as Healthy People 2010),
including the national dissemination of information on--
``(A) incidence and prevalence;
``(B) secondary conditions arising from traumatic brain
injury upon discharge from hospitals and trauma centers.'';
(2) in subsection (d)--
(A) in the second sentence, by striking ``anoxia due to
near drowning.'' and inserting ``anoxia.''; and
(B) in the third sentence, by inserting before the period
the following: ``, after consultation with States and other
appropriate public or nonprofit private entities''.
(b) National Registry.--Part J of title III of the Public
Health Service Act (42 U.S.C. 280b et seq.) is amended by
inserting after section 393A the following section:
``national program for traumatic brain injury registries
``Sec. 393B. (a) In General.--The Secretary, acting through
the Director of the Centers for Disease Control and
Prevention, may make grants to States or their designees to
operate the State's traumatic brain injury registry, and to
academic institutions to conduct applied research that will
support the development of such registries, to collect data
concerning--
``(1) demographic information about each traumatic brain
injury;
``(2) information about the circumstances surrounding the
injury event associated with each traumatic brain injury;
``(3) administrative information about the source of the
collected information, dates of hospitalization and
treatment, and the date of injury; and
``(4) information characterizing the clinical aspects of
the traumatic brain injury, including the severity of the
injury, the types of treatments received, and the types of
services utilized.''.
SEC. 1303. PROGRAMS OF NATIONAL INSTITUTES OF HEALTH.
(a) Interagency Program.--Section 1261(d)(4) of the Public
Health Service Act (42 U.S.C. 300d-61(d)(4)) is amended--
(1) in subparagraph (A), by striking ``degree of injury''
and inserting ``degree of brain injury'';
(2) in subparagraph (B), by striking ``acute injury'' and
inserting ``acute brain injury''; and
(3) in subparagraph (D), by striking ``injury treatment''
and inserting ``brain injury treatment''.
(b) Definition.--Section 1261(h)(4) of the Public Health
Service Act (42 U.S.C. 300d-61(h)(4)) is amended--
(1) in the second sentence, by striking ``anoxia due to
near drowning.'' and inserting ``anoxia.''; and
(2) in the third sentence, by inserting before the period
the following: ``, after consultation with States and other
appropriate public or nonprofit private entities''.
(c) Authorization of Appropriations.--Section 1261 of the
Public Health Service Act (42 U.S.C. 300d-61) is amended by
adding at the end the following:
``(i) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2000 through 2004.''.
SEC. 1304. PROGRAMS OF HEALTH RESOURCES AND SERVICES
ADMINISTRATION.
Section 1252 of the Public Health Service Act (42 U.S.C.
300d-51) is amended--
[[Page H2708]]
(1) in subsection (b)(3)--
(A) in subparagraph (A)(iv), by striking ``representing
traumatic brain injury survivors'' and inserting
``representing individuals with traumatic brain injury'';
and
(B) in subparagraph (B), by striking ``who are survivors
of'' and inserting ``with'';
(2) in subsection (c)--
(A) in paragraph (1), by striking ``, in cash,''; and
(B) in paragraph (2), by amending the paragraph to read as
follows:
``(2) Determination of amount contributed.--Non-Federal
contributions under paragraph (1) may be in cash or in kind,
fairly evaluated, including plant, equipment, or services.
Amounts provided by the Federal Government, or services
assisted or subsidized to any significant extent by the
Federal Government, may not be included in determining the
amount of such contributions.'';
(3) by designating subsections (e) through (h) as
subsections (g) through (j), respectively; and
(4) by inserting after subsection (d) the following
subsections:
``(e) Continuation of Previously Awarded Demonstration
Projects.--A State that received a grant under this section
prior to the date of enactment of the Children's Health Act
of 2000 may compete for new project grants under this section
after such date of enactment.
``(f) Use of State Grants.--
``(1) Community services and supports.--A State shall
(directly or through awards of contracts to nonprofit private
entities) use amounts received under a grant under this
section for the following:
``(A) To develop, change, or enhance community-based
service delivery systems that include timely access to
comprehensive appropriate services and supports. Such service
and supports--
``(i) shall promote full participation by individuals with
brain injury and their families in decision making regarding
the services and supports; and
``(ii) shall be designed for children and other individuals
with traumatic brain injury.
``(B) To focus on outreach to underserved and
inappropriately served individuals, such as individuals in
institutional settings, individuals with low socioeconomic
resources, individuals in rural communities, and individuals
in culturally and linguistically diverse communities.
``(C) To award contracts to nonprofit entities for consumer
or family service access training, consumer support, peer
mentoring, and parent to parent programs.
``(D) To provide individual and family service coordination
or case management systems.
``(E) To support other needs identified by the advisory
board under subsection (b) for the State involved.
``(2) Best practices.--
``(A) In general.--State services and supports provided
under a grant under this section shall reflect the best
practices in the field of traumatic brain injury, shall be in
compliance with title II of the Americans with Disabilities
Act of 1990, and shall be supported by quality assurance
measures as well as state-of-the-art health care and
integrated community supports, regardless of the severity of
injury.
``(B) Demonstration by state agency.--The State agency
responsible for administering amounts received under a grant
under this section shall demonstrate or express a willingness
to obtain expertise and knowledge of traumatic brain injury
and the unique needs associated with traumatic brain injury.
``(3) State capacity building.--A State may use amounts
received under a grant under this section to--
``(A) educate consumers and families;
``(B) train professionals in public and private sector
financing (such as third party payers, State agencies,
community-based providers, schools, and educators);
``(C) develop or improve case management or service
coordination systems;
``(D) develop best practices in areas such as family or
consumer support, return to work, housing or supportive
living personal assistance services, assistive technology and
devices, behavioral health services, substance abuse
services, and traumatic brain injury treatment and
rehabilitation;
``(E) tailor existing State systems to provide
accommodations to the needs of individuals with brain injury
(including systems administered by the State departments
responsible for health, mental health, labor, education,
mental retardation/developmental disorders, transportation,
and correctional systems);
``(F) improve data sets coordinated across systems and
other needs identified by a State plan supported by its
advisory council; and
``(G) develop capacity within targeted communities.'';
(5) in subsection (g) (as so redesignated), by striking
``agencies of the Public Health Service'' and inserting
``Federal agencies'';
(6) in subsection (i) (as redesignated by paragraph (3))--
(A) in the second sentence, by striking ``anoxia due to
near drowning.'' and inserting ``anoxia.''; and
(B) in the third sentence, by inserting before the period
the following: ``, after consultation with States and other
appropriate public or nonprofit private entities''; and
(7) in subsection (j) (as so redesignated), by amending the
subsection to read as follows:
``(j) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
TITLE XIV--PREVENTION AND CONTROL OF INJURIES
SEC. 1401. AUTHORIZATION OF APPROPRIATIONS FOR PROGRAMS OF
CENTERS FOR DISEASE CONTROL AND PREVENTION.
Section 394A of the Public Health Service Act (42 U.S.C.
280b-3) is amended by striking ``and'' after ``1994'' and by
inserting before the period the following: ``, and such sums
as may be necessary for each of the fiscal years 2001 through
2005.''.
TITLE XV--HEALTHY START INITIATIVE
SEC. 1501. SHORT TITLE.
This title may be cited as the ``Healthy Start Initiative
Continuation Act''.
SEC. 1502. CONTINUATION OF HEALTHY START PROGRAM.
Subpart I of part D of title III of the Public Health
Service Act, as amended by section 1203 of this Act, is
amended by adding at the end the following section:
``SEC. 330H. HEALTHY START FOR INFANTS.
``(a) In General.--
``(1) Continuation and expansion of program.--The
Secretary, acting through the Administrator of the Health
Resources and Services Administration, Maternal and Child
Health Bureau, shall under authority of this section continue
in effect the Healthy Start Initiative and may, during fiscal
year 2001 and subsequent years, carry out such program on a
national basis.
``(2) Definition.--For purposes of paragraph (1), the term
`Healthy Start Initiative' is a reference to the program
that, as an initiative to reduce the rate of infant mortality
and improve perinatal outcomes, makes grants for project
areas with high annual rates of infant mortality and that,
prior to the effective date of this section, was a
demonstration program carried out under section 301.
``(3) Additional grants.-- Effective upon increased funding
beyond fiscal year 1999 for such Initiative, additional
grants may be made to States to assist communities with
technical assistance, replication of successful projects, and
State policy formation to reduce infant and maternal
mortality and morbidity.
``(b) Requirements for Making Grants.--In making grants
under subsection (a), the Secretary shall require that
applicants (in addition to meeting all eligibility criteria
established by the Secretary) establish, for project areas
under such subsection, community-based consortia of
individuals and organizations (including agencies responsible
for administering block grant programs under title V of the
Social Security Act, consumers of project services, public
health departments, hospitals, health centers under section
330, and other significant sources of health care services)
that are appropriate for participation in projects under
subsection (a).
``(c) Coordination.--Recipients of grants under subsection
(a) shall coordinate their services and activities with the
State agency or agencies that administer block grant programs
under title V of the Social Security Act in order to promote
cooperation, integrity, and dissemination of information with
Statewide systems and with other community services funded
under the Maternal and Child Health Block Grant.
``(d) Rule of Construction.--Except to the extent
inconsistent with this section, this section may not be
construed as affecting the authority of the Secretary to make
modifications in the program carried out under subsection
(a).
``(e) Medically Appropriate Ultrasound Services; Medically
Appropriate Services for At-Risk Mothers and Infants.--
``(1) In general.--The Secretary may make grants to health
care entities to provide--
``(A) for pregnant women, ultrasound services provided by
qualified health care professionals upon medical indication
and referral from health care professionals who provide
comprehensive prenatal services; and
``(B) for pregnant women or infants, other health services
(including prenatal care, genetic counseling, and fetal and
other surgery) that--
``(i) are determined by a qualified treating health care
professional to be medically appropriate in order to prevent
or mitigate congenital defects (including but not limited to
spina bifida and hydrocephaly) or other serious obstetric
complications (including but not limited to placenta previa,
premature rupture of membranes, or preeclampsia); and
``(ii) are provided during pregnancy or during the first
year after birth.
``(2) Eligible project area.--The Secretary may make a
grant under paragraph (1) only if the geographic area in
which services under the grant will be provided is a
geographic area in which a project under subsection (a) is
being carried out, and if the Secretary determines that the
grant will add to or expand the level of health services
available in such area to pregnant women and infants.
``(3) Transportation and subsistence expenses for certain
patients.--The purposes for which a grant under paragraph
(1)(B) may be expended include paying, on behalf of a
pregnant woman who is in need of the health services
described in such paragraph, transportation and subsistence
expenses to assist
[[Page H2709]]
the pregnant woman in obtaining such health services from the
grantee involved. The Secretary may establish such
restrictions regarding payments under the preceding sentence
as the Secretary determines to be appropriate.
``(4) Certain conditions.--A condition for the receipt of a
grant under paragraph (1) is that the applicant for the grant
agree as follows:
``(A) In the case of a grant under paragraph (1)(A), if
ultrasound services indicate that there is a fetal anomaly or
other serious obstetric complication, the applicant will
refer the pregnant woman involved for appropriate medical
services, including, as appropriate, for health services
described in paragraph (1)(B) provided by grantees under such
paragraph.
``(B) If the applicant provides nondirective pregnancy
counseling to patients and is not subject to the condition
under section 330F(b), such counseling provided by the
applicant to patients will include (but is not limited to)
the provision of adoption information and referrals.
``(5) Relationship to payments under other programs.--A
grant may be made under paragraph (1) only if the applicant
involved agrees that the grant will not be expended to pay
the expenses of providing any service under such paragraph to
a pregnant woman to the extent that payment has been made, or
can reasonably be expected to be made, with respect to such
expenses--
``(A) under any State compensation program, under an
insurance policy, or under any Federal or State health
benefits program; or
``(B) by an entity that provides health services on a
prepaid basis.
``(6) Evaluation by general accounting office.--
``(A) In general.--During fiscal year 2004, the Comptroller
General of the United States shall conduct an evaluation of
activities under grants under paragraph (1) in order to
determine whether the activities have been effective in
serving the needs of pregnant women with respect to
ultrasound services and the other health services described
in paragraph (1)(B). The evaluation shall include an analysis
of whether such activities have been effective in reducing
the disparity in health status between the general population
and individuals who are members of racial or ethnic minority
groups. Not later than January 10, 2005, the Comptroller
General shall submit to the Committee on Commerce in the
House of Representatives, and to the Committee on Health,
Education, Labor, and Pensions in the Senate, a report
describing the findings of the evaluation.
``(B) Relation to grants regarding medically appropriate
services for at-risk mothers and infants.--Before the date on
which the evaluation under subparagraph (A) is submitted in
accordance with such subparagraph--
``(i) the Secretary shall ensure that there are not more
than three grantees under paragraph (1)(B); and
``(ii) an entity is not eligible to receive grants under
such paragraph unless the entity has substantial experience
in providing the health services described in such paragraph.
``(e) Funding.--
``(1) General program.--
``(A) Authorization of appropriations.--For the purpose of
carrying out this section (other than subsection (e)), there
are authorized to be appropriated such sums as may be
necessary for each of the fiscal years 2001 through 2005.
``(B) Allocations.--
``(i) Program administration.--Of the amounts appropriated
under subparagraph (A) for a fiscal year, the Secretary may
reserve up to 5 percent for coordination, dissemination,
technical assistance, and data activities that are determined
by the Secretary to be appropriate for carrying out the
program under this section.
``(ii) Evaluation.--Of the amounts appropriated under
subparagraph (A) for a fiscal year, the Secretary may reserve
up to 1 percent for evaluations of projects carried out under
subsection (a). Each such evaluation shall include a
determination of whether such projects have been effective in
reducing the disparity in health status between the general
population and individuals who are members of racial or
ethnic minority groups.
``(2) Medically appropriate ultrasound services; medically
appropriate services for at-risk mothers and infants.--
``(A) Authorization of appropriations.--For the purpose of
carrying out subsection (e), there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.
``(B) Allocation.--Of the amounts appropriated under
subparagraph (A) for a fiscal year, the Secretary shall make
available not less than 10 percent for providing ultrasound
services under subsection (d)(1)(A) (provided by qualified
health care professionals upon medical indication and
referral from health care professionals who provide
comprehensive prenatal services) through visits by mobile
units to communities that are eligible for services under
subsection (a).''.
TITLE XVI--ORAL HEALTH PROMOTION AND DISEASE PREVENTION
SEC. 1601. ORAL HEALTH PROMOTION AND DISEASE
PREVENTION.
Part B of title III of the Public Health Service Act, as
amended by section 912 of this Act, is amended by inserting
after section 317M the following section:
``oral health promotion and disease prevention
``Sec. 317N. (a) Grants to Increase Resources for Community
Water Fluoridation.--
``(1) In general.--The Secretary, acting through the
Director of the Centers for Disease Control and Prevention,
may make grants to States and Indian tribes for the purpose
of increasing the resources available for community water
fluoridation.
``(2) Use of funds.--A State shall use amounts provided
under a grant under paragraph (1)--
``(A) to purchase fluoridation equipment;
``(B) to train fluoridation engineers;
``(C) to develop educational materials on the benefits of
fluoridation; or
``(D) to support the infrastructure necessary to monitor
and maintain the quality of water fluoridation.
``(b) Community Water Fluoridation.--
``(1) In general.--The Secretary, acting through the
Director of the Centers for Disease Control and Prevention
and in collaboration with the Director of the Indian Health
Service, shall establish a demonstration project that is
designed to assist rural water systems in successfully
implementing the water fluoridation guidelines of the Centers
for Disease Control and Prevention that are entitled
``Engineering and Administrative Recommendations for Water
Fluoridation, 1995'' (referred to in this subsection as the
`EARWF').
``(2) Requirements.--
``(A) Collaboration.--In collaborating under paragraph (1),
the Directors referred to in such paragraph shall ensure that
technical assistance and training are provided to tribal
programs located in each of the 12 areas of the Indian Health
Service. The Director of the Indian Health Service shall
provide coordination and administrative support to tribes
under this section.
``(B) General use of funds.--Amounts made available under
paragraph (1) shall be used to assist small water systems in
improving the effectiveness of water fluoridation and to meet
the recommendations of the EARWF.
``(C) Fluoridation specialists.--
``(i) In general.--In carrying out this subsection, the
Secretary shall provide for the establishment of fluoridation
specialist engineering positions in each of the Dental
Clinical and Preventive Support Centers through which
technical assistance and training will be provided to tribal
water operators, tribal utility operators and other Indian
Health Service personnel working directly with fluoridation
projects.
``(ii) Liaison.--A fluoridation specialist shall serve as
the principal technical liaison between the Indian Health
Service and the Centers for Disease Control and Prevention
with respect to engineering and fluoridation issues.
``(iii) CDC.--The Director of the Centers for Disease
Control and Prevention shall appoint individuals to serve as
the fluoridation specialists.
``(D) Implementation.--The project established under this
subsection shall be planned, implemented and evaluated over
the 5-year period beginning on the date on which funds are
appropriated under this section and shall be designed to
serve as a model for improving the effectiveness of water
fluoridation systems of small rural communities.
``(3) Evaluation.--In conducting the ongoing evaluation as
provided for in paragraph (2)(D), the Secretary shall ensure
that such evaluation includes--
``(A) the measurement of changes in water fluoridation
compliance levels resulting from assistance provided under
this section;
``(B) the identification of the administrative, technical
and operational challenges that are unique to the
fluoridation of small water systems;
``(C) the development of a practical model that may be
easily utilized by other tribal, state, county or local
governments in improving the quality of water fluoridation
with emphasis on small water systems; and
``(D) the measurement of any increased percentage of Native
Americans or Alaskan Natives who receive the benefits of
optimally fluoridated water.
``(c) School-Based Dental Sealant Program.--
``(1) In general.--The Secretary, acting through the
Director of the Centers for Disease Control and Prevention
and in collaboration with the Administrator of the Health
Resources and Services Administration, may award grants to
States and Indian tribes to provide for the development of
school-based dental sealant programs to improve the access of
children to sealants.
``(2) Use of funds.--A State shall use amounts received
under a grant under paragraph (1) to provide funds to
eligible school-based entities or to public elementary or
secondary schools to enable such entities or schools to
provide children in second and sixth grades with access to
dental care and dental sealant services. Such services shall
be provided by licensed dental health professionals in
accordance with State practice licensing laws.
``(3) Eligibility.--To be eligible to receive funds under
paragraph (1), an entity shall--
``(A) prepare and submit to the State an application at
such time, in such manner and containing such information as
the state may require; and
``(B) be a public elementary or secondary school--
[[Page H2710]]
``(i) that is located in an urban area in which and more
than 50 percent of the student population is participating in
federal or state free or reduced meal programs; or
``(ii) that is located in a rural area and, with respect to
the school district in which the school is located, the
district involved has a median income that is at or below 235
percent of the poverty line, as defined in section 673(2) of
the Community Services Block Grant Act (42 U.S.C. 9902(2)).
``(d) Definitions.--For purposes of this section, the term
`Indian tribe' means an Indian tribe or tribal organization
as defined in section 4(b) and section 4(c) of the Indian
Self-Determination and Education Assistance Act.
``(e) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
TITLE XVII--VACCINE COMPENSATION PROGRAM
SEC. 1701. SHORT TITLE.
This title may be cited as the ``Vaccine Injury
Compensation Program Amendments of 2000.''.
SEC. 1702. CONTENT OF PETITIONS.
(a) In General.--Section 2111(c)(1)(D) of the Public Health
Service Act (42 U.S.C. 300aa-11(c)(1)(D)) is amended by
striking ``and'' at the end and inserting ``or (iii) suffered
such illness, disability, injury, or condition from the
vaccine which resulted in inpatient hospitalization and
surgical intervention, and''.
(b) Effective Date.--The amendment made by subsection (a)
takes effect upon the date of the enactment of this Act,
including with respect to petitions under section 2111 of the
Public Health Service Act that are pending on such date.
TITLE XVIII--HEPATITIS C
SEC. 1801. SHORT TITLE.
This title may be cited as the ``Hepatitis C and Children
Act of 2000''.
SEC. 1802. SURVEILLANCE AND EDUCATION REGARDING HEPATITIS C.
Part B of title III of the Public Health Service Act, as
amended by section 1601 of this Act, is amended by inserting
after section 317N the following section:
``surveillance and education regarding hepatitis c virus
``Sec. 317O. (a) In General.--The Secretary, acting through
the Director of the Centers for Disease Control and
Prevention, may (directly and through grants to public and
nonprofit private entities) provide for programs to carry out
the following:
``(1) To cooperate with the States in implementing a
national system to determine the incidence and prevalence of
cases of infection with hepatitis C virus, including the
reporting of chronic hepatitis C cases.
``(2) To identify and contact individuals who became
infected with such virus as a result of receiving blood
transfusions prior to July 1992 when the individuals were
infants, small children, or adolescents.
``(3) To provide appropriate referrals for counseling,
testing, and medical treatment of individuals identified
under paragraph (2) and to ensure, to the extent practicable,
the provision of appropriate follow-up services.
``(4) To develop and disseminate public information and
education programs for the detection and control of hepatitis
C, with priority given to recipients of blood transfusions;
women who gave birth by caesarean section; children who were
high-risk neonates; veterans of the Armed Forces; and health
professionals.
``(5) To improve the education, training, and skills of
health professionals in the detection and control of cases of
infection with hepatitis C, with priority given to
pediatricians and other primary care physicians.
``(b) Laboratory Procedures.--The Secretary may (directly
and through grants to public and nonprofit private entities)
carry out programs to provide for improvements in the quality
of clinical-laboratory procedures regarding hepatitis C,
including reducing variability in laboratory results on
hepatitis C antibody and PCR testing.
``(c) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005.''.
TITLE XIX--NIH INITIATIVE ON AUTOIMMUNE DISEASES
SEC. 1901. SHORT TITLE.
This title may be cited as the ``NIH Autoimmune Diseases
Initiative Act of 2000''.
SEC. 1902. JUVENILE DIABETES, JUVENILE ARTHRITIS, LUPUS,
MULTIPLE SCLEROSIS, AND OTHER AUTOIMMUNE-
DISEASES; INITIATIVE THROUGH DIRECTOR OF
NATIONAL INSTITUTES OF HEALTH.
Part B of title IV of the Public Health Service Act, as
amended by section 1002 of this Act, is amended by adding at
the end the following:
``autoimmune diseases
``Sec. 409E. (a) Expansion, Intensification, and
Coordination of Activities.--
``(1) In general.--The Director of NIH shall expand,
intensify, and coordinate research and other activities of
the National Institutes of Health with respect to juvenile-
onset diabetes, rheumatoid arthritis, systemic lupus
erthematosus, multiple sclerosis, Sjogren's syndrome,
scleroderma, chronic fatigue syndrome, Crohn's disease and
colitis (in this section referred to as `autoimmune
diseases').
``(2) Allocations by director of nih.--With respect to
amounts appropriated to carry out this section for a fiscal
year, the Director of NIH shall allocate the amounts among
the national research institutes that are carrying out
paragraph (1).
``(3) Additional diseases or disorders.--In addition to the
diseases or disorders specified in paragraph (1), the term
`autoimmune disease' includes for purposes of this section
such other diseases or disorders as the Secretary determines
to be appropriate.
``(b) Coordinating Committee.--
``(1) In general.--The Secretary shall establish a
committee to be known as Autoimmune Diseases Coordinating
Committee (referred to in this subsection as the
`Coordinating Committee').
``(2) Duties.--The Coordinating Committee shall, with
respect to autoimmune diseases--
``(A) provide for the coordination of the activities of the
national research institutes; and
``(B) coordinate the aspects of all Federal health programs
and activities relating to such diseases in order to assure
the adequacy and technical soundness of such programs and
activities and in order to provide for the full communication
and exchange of information necessary to maintain adequate
coordination of such programs and activities.
``(3) Composition.--The Coordinating Committee shall be
composed of the directors of each of the national research
institutes involved in research with respect to autoimmune
diseases and representatives of all other Federal departments
and agencies whose programs involve health functions or
responsibilities relevant to such diseases, including the
Centers for Disease Control and Prevention and the Food and
Drug Administration.
``(4) Chair.--From among the members of the Coordinating
Committee, the Committee shall designate an individual to
serve as the chair of the Committee. With respect to
autoimmune diseases, the Chair shall serve as the principal
advisor to the Secretary, the Assistant Secretary for Health,
and the Director of NIH, and shall provide advice to the
Director of the Centers for Disease Control and Prevention,
the Commissioner of Food and Drugs, and other relevant
agencies.
``(5) Full-time staff.--The Secretary shall ensure that the
Coordinating Committee is staffed and supported by not fewer
than three scientists or health professionals for whom such
service is a full-time Federal position. The Secretary shall
in addition ensure that the Committee is provided with such
administrative staff and support as may be necessary to carry
out the duties of the Committee.
``(c) Advisory Council.--
``(1) In general.--The Secretary shall establish an
advisory council to be known as the Autoimmune Diseases
Public Advisory Council (referred to in this subsection as
the `Advisory Council').
``(2) Duties.--The Advisory Council shall provide to the
Director of NIH and the Coordinating Committee under
subsection (b) recommendations on carrying out this section,
including the plan under subsection (d).
``(3) Composition.--The Advisory Council shall be composed
exclusively of not more than 18 members appointed to the
Council by the Secretary from among individuals who are not
officers or employees of the United States. The Secretary
shall ensure that the membership of the Advisory Council
includes--
``(A) scientists or health professionals who are
knowledgeable with respect to autoimmune diseases;
``(B) representatives of autoimmune disease patient
advocacy organizations, including organizations advocating on
behalf of diseases affecting small patient populations; and
``(C) patients and parents of children with such diseases,
including autoimmune diseases affecting small patient
populations.
``(d) Plan for NIH Activities.--
``(1) In general.--The Coordinating Committee shall develop
a plan for conducting and supporting research and education
on autoimmune diseases through the national research
institutes, shall review the plan not less frequently than
once each fiscal year, and shall revise the plan as
appropriate. The plan shall--
``(A) provide for a broad range of research and education
activities relating to biomedical, psychosocial, and
rehabilitative issues, including studies of the
disproportionate impact of such diseases on women; and
``(B) establish priorities among the programs and
activities of the National Institutes of Health regarding
such diseases.
``(2) Certain elements of plan.--The plan under paragraph
(1) shall, with respect to autoimmune diseases, provide for
the following:
``(A) Research to determine the reasons underlying the
incidence and prevalence of the diseases.
``(B) Basic research concerning the etiology and causes of
the diseases.
``(C) Epidemiological studies to address the frequency and
natural history of the diseases, including any differences
among the sexes and among racial and ethnic groups.
``(D) The development of improved screening techniques.
``(E) Clinical research for the development and evaluation
of new treatments, including new biological agents.
``(F) Information and education programs for health care
professionals and the public.
[[Page H2711]]
``(3) Recommendations of advisory council.--In developing
the plan under paragraph (1), and reviewing and revising the
plan, the Coordinating Committee shall consider the
recommendations of the Advisory Council regarding the plan.
``(4) Implementation of plan.--The Director of NIH shall
ensure that programs and activities of the National
Institutes of Health regarding autoimmune diseases are
implemented in accordance with the plan under paragraph (1).
``(e) Reports to Congress.--The Coordinating Committee
under subsection (b)(1) shall annually submit to the
Committee on Commerce of the House of Representatives, and
the Committee on Health, Education, Labor and Pensions of the
Senate, a report that describes the research, education, and
other activities on autoimmune diseases being conducted or
supported through the national research institutes, and that
in addition includes the following:
``(1) The plan under subsection (d)(1) (or revisions to the
plan, as the case may be).
``(2) The recommendations of the advisory council under
subsection (c) regarding the plan (or revisions, as the case
may be).
``(3) Provisions specifying the amounts expended by the
National Institutes of Health with respect to each of the
autoimmune diseases included in the plan.
``(4) Provisions identifying particular projects or types
of projects that should in the future be conducted or
supported by the national research institutes or other
entities in the field of research on autoimmune diseases.
``(f) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated such sums as may be necessary for each of the
fiscal years 2001 through 2005. The authorization of
appropriations established in the preceding sentence is in
addition to any other authorization of appropriations that is
available for conducting or supporting through the National
Institutes of Health research and other activities with
respect to autoimmune diseases.''.
TITLE XX--GRADUATE MEDICAL EDUCATION PROGRAMS IN CHILDREN'S HOSPITALS
SEC. 2001. EXTENSION OF AUTHORIZATION OF APPROPRIATIONS.
Section 340E(f) of the Public Health Service Act (42 U.S.C.
256e(f)) is amended--
(1) in paragraph (1)(A)--
(A) in clause (i), by striking ``and'' at the end;
(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 necessary.''; 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 necessary.''.
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''.
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 subparagraphs:
``(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
address the unique health care needs of children,
``(N) carry out studies and demonstration projects for the
purpose of improving procedures for organ donation
procurement and allocation, including but not limited to
projects to examine and attempt to increase transplantation
among populations with special needs, including children and
individuals who are members of racial or ethnic minority
groups, and among populations with limited access to
transportation, and
``(O) provide that for purposes of this paragraph, the term
`children' refers to individuals 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 determine 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
Secretary 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 addition to making
determinations under paragraph (1), the study under such
paragraph makes recommendations 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
government programs cover such costs.
(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 children.
(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 Congress.
TITLE XXII--MISCELLANEOUS PROVISIONS
SEC. 2201. REPORT REGARDING RESEARCH ON RARE DISEASES IN
CHILDREN.
Not later than 180 days after the date of the enactment 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
(2) the activities that are planned to be conducted 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.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Florida (Mr. Bilirakis) and the gentleman from Ohio (Mr. Brown) each
will control 20 minutes.
The Chair recognizes the gentleman from Florida (Mr. Bilirakis).
General Leave
Mr. BILIRAKIS. Mr. Speaker, I ask unanimous consent that all Members
may have 5 legislative days within which to revise and extend their
remarks and include extraneous material on H.R. 4365.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Florida?
There was no objection.
Mr. BILIRAKIS. Mr. Speaker, I yield myself such time as I may
consume.
Mr. Speaker, I am very pleased to bring H.R. 4365, the Children's
Health Act of 2000, to the floor of the House today. Every mother knows
that America's children are its future.
On Sunday, we will celebrate Mother's Day to honor millions of women
for the loving care they provide. I can think of no better gift to them
than passage of this legislation to protect children from the threat of
disease.
My subcommittee has examined some of the difficult barriers we face
in working to improve children's health. Witnesses have testified about
a number of serious childhood afflictions, including autism, childhood
asthma and juvenile diabetes. We also discussed measures to promote
adoption of children with special health needs.
Mr. Speaker, H.R. 4365 is an extended version of the original
children's health bill, H.R. 3301. I was pleased to introduce both
bills with the ranking member of the Subcommittee on Health and
Environment, the gentleman from Ohio (Mr. Brown). Together we have
worked on a bipartisan basis and overcome significant, significant
obstacles to bring this bill to the floor, and towards that end, I
would like to personally thank the two members of our staffs, Anne
Esposito of my staff, and Eleanor Dehoney from the staff of the
gentleman from Ohio (Mr. Brown), and Mr. Jason Lee and Marc Wheat of
the majority staff for all of their efforts in this regard.
The bill before us, like its predecessor, authorizes and reauthorizes
children's disease research and prevention activities conducted under
the Public Health Service Act. Among its key provisions, the bill
establishes a new pediatric research initiative within the National
Institutes of Health to enhance opportunities for research and improve
coordination of efforts to prevent or cure diseases affecting children.
The bill also addresses a number of specific concerns, including
autism, fragile X, birth defects, early hearing loss, epilepsy, asthma,
juvenile arthritis, skeletal malignancies, juvenile diabetes, adoption
awareness, traumatic brain injury, injury prevention,
[[Page H2712]]
Healthy Start, oral health, vaccine injury compensation, hepatitis C,
autoimmune diseases, graduate medical education in children's
hospitals, organ transplantation needs of children and rare diseases in
children. Equally important, it does not include specific funding
earmarks or other controversial provisions.
This legislation incorporates a number of separate legislative
proposals. I would like to acknowledge the efforts of those Members who
worked to develop provisions that were included in the bill. I also
want to acknowledge all of the patient advocates and cosponsors of the
original children's health bill who lent their strong support to this
initiative. Their dedication helped keep this legislation alive.
We can never estimate the human toll of childhood diseases. However,
they also have an enormous financial impact through billions of dollars
in increased health care costs. Every dollar spent by the Federal
Government on disease research and prevention is an extremely wise
investment.
Any parent can tell you that nothing is more heart wrenching than
watching your own child suffer with an illness. As a father and
grandfather myself, I know how terrible that can be. Today, however, we
have a rare opportunity to do something that will give hope to families
devastated by childhood disease.
It is my hope that Members will put aside their personal agendas and
political disagreements to support passage of this consensus-based
measure. Childhood diseases inflict pain and disruption on countless
American children and their families. For the patients, families,
caregivers and friends whose lives have been touched by childhood
diseases, we should demonstrate our shared commitment to ending these
terrible afflictions by approving H.R. 4365.
Mr. Speaker, I reserve the balance of my time.
Mr. BROWN of Ohio. Mr. Speaker, I yield myself such time as I may
consume.
There are times, Mr. Speaker, when I feel especially privileged to be
here and this is one of those times. This bill can help children I have
met. It gives hope to parents I have met. I have two amazing daughters.
I know how it feels when the only thing that matters is to end whatever
it is that is causing your child pain. When the only thing that matters
is to smooth the path for them to make sure the odds are and stay
solidly in their favor. I can only imagine how the parents of a child
with autism or arthritis or epilepsy must feel as they seek help for
their children only to encounter dead end after dead end; to look for
answers and to be told that the knowledge simply is not there, to be
told that research is lacking.
H.R. 4365 is not a glamorous bill. Its passage is not going to make
or break any campaigns. You are not going to hear about it on Meet the
Press. But H.R. 4365 responds to very real needs. It does several good
things.
The initiatives authorized in H.R. 4365 intensify efforts to find a
cure for autism. The initiatives authorized could contribute to the
cure and the prevention of juvenile diabetes, juvenile arthritis,
epilepsy and asthma. The initiatives could contribute to the prevention
of birth defects. It could help children with traumatic brain injury
and protect more children from the environmental injuries like lead
poisoning.
H.R. 4365 promotes children's health in other important ways. It
extends the authorization for resources to support graduate medical
education in our Nation's freestanding children's hospitals. It
establishes a pediatric research initiative within NIH to create a more
level playing field for research targeting children. The bill offers
hope to children and hope to their families and if we put the resources
behind it as we should, this bill will deliver children in the future
from illnesses and disabilities that compromise their health and their
well-being.
I feel privileged to have worked with families and community leaders
and Members on both sides of the aisle who are committed to the goals
of this bill and who have worked tirelessly to see that something
actually gets done to achieve these goals.
I thank the gentleman from Florida (Mr. Bilirakis) for his good work,
Jason Lee and Anne Esposito in his office and Donna Pignatelli, Ellie
Dehoney and Katie Porter in mine. I hope the House will join in
supporting this legislation.
Mr. Speaker, I reserve the balance of my time.
Mr. BILIRAKIS. Mr. Speaker, I yield 3 minutes to the gentleman from
Pennsylvania (Mr. Greenwood).
Mr. GREENWOOD. Mr. Speaker, I thank the gentleman for yielding me
this time. As the previous speaker, I do not think there is a moment
that I have been more proud to be a Member of this body than I am
today. The Children's Health Act is Congress's Mother's Day present to
the Nation as well as an early Father's Day present. What makes us good
mothers and fathers is our devotion to our children. Nothing so
sharpens, focuses and deepens a parent's devotion as when their
children are ill. When the child's illness is chronic, the parent's
devotion becomes life long. Parents will do whatever they can for their
children, but sometimes they need our help. They need Congress to fund
research about the treatment and the cure for these diseases. They need
us to help educate physicians and to monitor the incidence of these
diseases. This bill will provide new hope to parents of children with
the long list of diseases that the gentleman from Florida (Mr.
Bilirakis) laid out in the beginning. In addition, it creates a brand
new pediatric research initiative at the National Institutes of Health.
I would like to focus my remarks on the story of autism in this bill.
Autism is the third most common childhood disorder in America. It
affects 400,000 people in the United States. One out of every 500
babies born in this country has autism. Parents with children with
autism see their children grow and develop normally and suddenly they
seem to vanish. They lose their communication skills, their language
skills. It is an agony for the parents.
This disease was misdiagnosed for a generation. Parents were told
that their children were autistic because they had been poorly parented
or traumatized. It was a cruel misdiagnosis on the part of these
physicians. But the parents of these children formed an organization
called Cure Autism Now and they did what the civics books told them to.
They came to Washington, they told their elected representatives of
their experience and they asked for our help. We put together an autism
bill and we began the long process.
These parents came to press conferences, sometimes press conferences
without press. They came and they did everything humanly possible to
make the country and to make the Members of the United States Congress
aware of their children's special needs. They came to the hearings and
they testified. It is a scary thing to come to a hearing before the
United States Congress and talk about your child, but they did that.
Then they suffered the agonies of the congressional clock, and they
waited month after month, year after year for Congress to slowly get
around to this bill. Today that day has finally come. Then finally in
the last few days, they suffered the agonies of watching the
possibility that this bill would get hijacked by other agendas,
perfectly good agendas but agendas that would make the bill
controversial.
{time} 1415
Finally, today, just about when they had been ready to give up hope,
the system worked and today we take up their bill, and we should be
proud to do so.
Mr. BROWN of Ohio. Mr. Speaker, I yield 3 minutes to the gentlewoman
from Colorado (Ms. DeGette), my friend who has done as much or more on
this legislation than any Member of the House.
Ms. DeGETTE. Mr. Speaker, I would like to thank the gentleman from
Florida (Mr. Bilirakis), the chairman of our subcommittee and the
gentleman from Ohio (Mr. Brown) for their tireless efforts on what was
not an easy process here. This is a good bill, and I am proud to
support it.
Mr. Speaker, nothing can be more important to our Nation's future
than our children. Numerous indicators of the well-being of our
children paint a mixed picture of both success and shortcomings. I
think this will give us a mixed view of what our Nation's future holds.
Reports of both gains and continued unmet needs are also apparent
with regard to a variety of other pediatric
[[Page H2713]]
health care needs. Infant mortality, immunization rates, pediatric
asthma care, youth violence, and the critically important fact that we
still have 11 million children in this country who do not have health
insurance.
Mr. Speaker, H.R. 4365 will increase research and prevention efforts
targeted to improve the lives of the children. I do not think that we
can question such a focus, but some have. If we have any doubt,
according to a report issued by the President's National Science and
Technology Council, the combined research spending for children in
adolescence throughout the Federal Government represents less than 3
percent of the total Federal research enterprise. Thus, the Federal
Government commits less than 3 percent of its research focused on the
lives of children, despite the fact that they are 30 percent of our
population and they are our future.
I would like to take the opportunity to highlight 2 important
provisions of this bill. First of all, diabetes affects 16 million
Americans and their families, often striking in childhood and becoming
a lifelong disease. Type 1 diabetes is one of the most costly, chronic
diseases of childhood. Now we are seeing Type 2 diabetes increasing
among children.
I am pleased that this bill includes a provision authorizing the
Centers for Disease Control and Prevention to implement a national
public health effort to address Type 2 in youth. It also expands
clinical trials for children with diabetes to move some of the
remarkable research on diabetes from the laboratory bench to the
patient's bedside.
Today's bill also incorporates the provisions from my legislation,
H.R. 4008, that will require the Organ Transplantation Network to adopt
criteria policies and procedures that will address the unique health
care needs of children and organ transplantation. Virtually identical
language was passed by this House just last month by a vote of 420 to
zero. It improves the lives of children by requiring the Organ
Transplantation Network to adopt criteria policies and procedures that
address the unique needs of children.
Through the passage of this bill, we have the opportunity to help
millions of children in this country. We owe to our children, our
families, and our Nation nothing less than this sound investment in our
future.
Mr. BILIRAKIS. Mr. Speaker, I yield 2 minutes to the gentleman from
New Jersey (Mr. Smith).
Mr. SMITH of New Jersey. Mr. Speaker, I thank my friend for yielding
me this time.
Mr. Speaker, H.R. 4365, the Child Health Act of 2000, must be passed
today and sent swiftly to the President for his signature.
Mr. Speaker, I would like to focus a few moments on the silent
epidemic of autism, we are in the midst of a silent epidemic of autism.
No State, no county, no Federal agency systematically tracks cases of
autism, but even faint glimpses of the truth are terrifying to behold.
According to the Federal Department of Education, autistic special
education students have increased by 153 percent from 1994 to 1999. In
my home State of New Jersey, the Department of Education has said the
number of kids classified as autistic in our school system has
increased from 241 in 1991 to an incredible, astonishing 2,354 in 1999,
an 876 percent increase.
Mr. Speaker, at my request, the CDC conducted a ground-breaking
autism prevalence investigation in Brick Township in New Jersey. The
findings of the 2-year investigation were released just last month. We
are informed that Brick's rate of classic autism was a whopping 4 per
1,000 children between ages 3 and 10, and the rate of autism spectrum
disorders was 6.7 cases per 1,000. That is higher than most people had
thought. Normally it is about 2 per 1,000. We had an incidence of 4 per
1,000.
Mr. Speaker, I want to thank the gentleman from Florida (Mr.
Bilirakis) for including the essence of my ASSURE bill which will
create 3 to 5 ``Centers of Excellence in Autism'' under the auspices of
the CDC so that the Federal Government will now be able to monitor the
prevalence of autism at the national level and develop, hopefully,
better teaching methods and health professionals to improve the
treatment. It also authorizes CDC to create a National Autism and
Pervasive Developmental Disability Surveillance Program. This program
would use a combination of grants, cooperative agreements, and
technical assistance to improve the collection, analysis and reporting
on this very serious anomaly that is afflicting so many of our
children.
Mr. Speaker, once again, I want to congratulate the gentleman from
Florida (Mr. Bilirakis) on a great bill and I hope all of my colleagues
will support it.
Most experts in autism research believe that while genetics are a
major determinant in developing autism, something else is at work. The
epidemiological research provided under H.R. 4365 will help researchers
sort out how much of the problem is genetic and how much is
environmental or developmental. If autism has a link to certain
environmental pollutants, the surveillance programs established under
ASSURE will be able to tell us more about these links. If autism is
related to an immunological response to certain vaccines, the data
provided by ASSURE can be used to support or dismiss this hypothesis.
Regardless of one's opinion on what causes autism, the bottom line is
that we will never be able to get the answers parents need without the
data generated by this bill. Once the CDC has established the centers
of excellence, they will serve as a model for states to copy and form
their own registries and surveillance programs. The centers will also
improve the standard of care for autistic persons by providing
education and training for health professionals, so that the latest
proven treatments and interventions can be utilized to the maximum
possible extent.
Also included in the Children's Health Act are provisions of H.R.
997, introduced by Congressman Jim Greenwood and myself, to improve
autism research programs at the National Institutes of Health (NIH).
This proposal, Section (B) of Title I, boosts the biomedical research
needed to help solve the puzzle of autism.
And that's just Title I. In addition, there are a host of vital
initiatives to improve surveillance efforts of children with diabetes,
promote adoption, and reduce asthma and enhance services to asthmatics.
All of these other provisions deserve out full support.
Today, Congress has an enormous opportunity to speak out on behalf of
those whose voices have been silenced by autism. Kids like Alanna and
Austin Gallagher in Brick Township, New Jersey.
Today, we can help restore breath to kids afflicted with asthma.
People like Tommy Farese of Spring Lake, and my own two daughters
Melissa and Elyse.
Today, we may save and extend the lives of children stricken by
juvenile diabetes, such as young Charlie Coats of East Windsor.
It is for these children, their mothers and fathers, and the
countless others like them across out nation, that we enact H.R. 4365.
Join with me in supporting this legislation.
Ms. DeGETTE. Mr. Speaker, I yield 2 minutes to the gentleman from New
Jersey (Mr. Rothman).
Mr. ROTHMAN. Mr. Speaker, I thank the gentlewoman for yielding me
this time.
I rise today in strong support of H.R. 4365, the Children's Health
Act of 2000. In particular, I want to commend the authors of this
legislation for the great strides it makes in autism research.
Mr. Speaker, autism is not rare. Four hundred thousand people in the
United States, mostly children, are affected by this terrible disease.
While 5 percent of those with autism may gain some progress with early
intervention, 95 percent of them, or more than 350,000 people, will
still suffer. They will never marry, they will never live on their own,
and more than half of them will never even learn to speak.
Families affected by autism are forced to bear an extraordinary
burden. Parents and siblings and friends have to learn to try to
communicate with a child, many of whom are incapable of either verbal
or nonverbal communication, and children who have often erratic
behavior. It is a disease little understood. I have been trying since I
came to Congress for find funding for autism research for the various
autism clusters that we believe are occurring throughout New Jersey. I
am proud that this bill lays the foundation for a comprehensive
research effort on autism.
Mr. Speaker, this day has been a long time in coming, and I know
those families who have been affected are grateful that it is now here.
I urge all of my colleagues on behalf of my nephew, Jack, who suffers
with autism and on behalf of a girl by the name of Heather Simms, who
has been in confinement
[[Page H2714]]
for 5 years, having been brought into an institution at the age of 12,
who today celebrates her 17th birthday, that this is a special day for
all of the autistic children in the United States, their parents and
loved ones. I urge my colleagues to support H.R. 4365 for its dramatic
increase in national funding and attention for autism research.
Mr. BILIRAKIS. Mr. Speaker, I yield 2 minutes to the gentlewoman from
Ohio (Ms. Pryce).
Ms. PRYCE of Ohio. Mr. Speaker, let me first congratulate the
gentleman from Florida (Mr. Bilirakis) and my colleague, the gentleman
from Ohio (Mr. Brown) for their very, very important work.
We all hope that the wealth of our Nation and the amazing
technological advances that have been made in medicine will give us the
necessary resources to protect our children from harm. We have made
tremendous progress, but the sad fact is that there are still so many
diseases that affect our children for which there is no cure, or even
effective treatment.
The legislation before us will give child victims and their families
hope by devoting more Federal resources to diseases such as autism,
Fragile X, asthma, skeletal malignancies, juvenile diabetes, the list
goes on and on. Sadly, it is quite long.
This legislation will also focus on prevention by encouraging healthy
pregnancies, analyzing data about birth defects, and investigating the
deaths and severe complications through pregnancy. In addition, a new
pediatric research initiative at NIH, along with reauthorization for
money to train physicians at children's hospitals, will help us better
understand the way in which diseases attack children and how to give
them the most effective and appropriate care. There are critical
differences between medical care for adults and medical care for
children, which must be reflected in training of physicians and
treatments designed for a child's system, which is still developing.
This legislation recognizes and focuses on these important differences.
Mr. Speaker, while we may never be able to make a child understand
why they are sick or are made to suffer, we can invest in the research
that will allow our best and brightest scientists to solve the
mysteries of childhood disease so that more children can live the
carefree youths to which they are entitled. What better way to invest
our Nation's resources.
Mr. Speaker, I urge my colleagues to support this important child
health initiative that will give hope to children and families across
America who are searching for answers and praying for a return to the
normalcy that will come with good health. As America's leaders, this
investment in our children's health is really the least we can do to
secure a better future for our Nation.
Ms. DeGETTE. Mr. Speaker, I yield 2 minutes to the gentleman from
Texas (Mr. Green), a distinguished member of the committee.
(Mr. GREEN of Texas asked and was given permission to revise and
extend his remarks.)
Mr. GREEN of Texas. Mr. Speaker, I want to thank the gentleman from
Florida (Mr. Bilirakis), the chairman of our Subcommittee on Health of
the Committee on Commerce, and the gentleman from Ohio (Mr. Brown), the
ranking member, for this legislation.
Just two weeks ago during our Easter Passover break at Texas
Children's Hospital in Houston, the gentleman from Texas (Mr. Bentsen)
and I held a juvenile diabetes forum to hear from parents and experts
on that terrible disease. Every member of the audience cried,
literally, as we heard from the parents of 3-year-old Larry Baltazar
who has recently been diagnosed with this disease. This legislation
will help Larry, along with helping millions of other children who are
diagnosed with juvenile diabetes, asthma, Fragile X and autism. It will
help children who are diagnosed with birth defects and those who suffer
a traumatic brain injury.
One thing that this legislation does not do, and I hope we can get
this remedied in the conference committee, is increase funds to States
for immunizations. Despite gains in recent years, we still are not
doing enough to make sure that children get the right immunizations
when they need it. In States like Texas, Michigan and Nevada, one in
four children are not receiving the proper immunizations. In Houston,
over 44 percent of the children do not receive at least one of their
immunizations. In California, 27 percent do not receive at least one of
their immunizations.
Over the past 5 years, Federal infrastructure funding to States, used
by States and cities to identify needs, conduct community outreach,
establish registries, deal with disease outbreaks and undertake
educational and tracking efforts, among other things, has been cut from
$271 million in 1995 to $139 million for the past 3 years. The
gentleman from Pennsylvania (Mr. Greenwood) and I have introduced H.
Con. Res. 315, which calls for an increase in funds to section 317, and
we hope this increase will be included in the final version of the
children's health legislation as it comes out of conference.
Mr. BILIRAKIS. Mr. Speaker, I yield 2 minutes to the gentleman from
Oklahoma (Mr. Watkins).
Mr. WATKINS. Mr. Speaker, I rise today in strong support of H.R.
4365, the Children'S Health Act of 2000. More specifically, I would
like to call to the attention of my colleagues one very important
aspect of this legislation that authorizes further research into a
disease known as Fragile X, the most commonly inherited cause of mental
retardation.
Fragile X affects one in every 2,000 newborn boys, and one in every
4,000 newborn girls. One in every 260 women is a carrier and has a 50
percent chance with each pregnancy of having a child with Fragile X.
Most of these afflicted children will require a lifetime of special
loving care at a cost of over $2 million each.
However, there is good news. One of the first discoveries of the
human genome project, the cause of Fragile X has been linked to the
absence of a single protein.
{time} 1430
Since that time, great strides have been made in understanding how
this disease causes mental retardation, seizures, aggressive outbursts,
and severe anxiety.
This research has led Dr. James Watson, who shared the Nobel Peace
Prize with Dr. Francis Crick on their discovery of DNA, to believe that
a cure for this heartbreaking disease is within sight.
H.R. 4365 authorizes the establishment of at least three fragile X
research centers through grants or contracts with public or private
institutions. It also provides a program encouraging health
professionals to conduct fragile X research by repaying a portion of
the educational costs.
Mr. Speaker, I dedicate this day and legislation to my friends, David
and Mary Beth Busby, who have two mentally retarded sons who suffer
because of fragile X and, along with many good people of the FRAXA
Research Foundation and many fine scientists within the National
Institutes of Health, have completely devoted themselves to finding a
cure for this disease.
I also dedicate this legislation to the mentally retarded children of
McCall's Chapel in Ada, Oklahoma, and to Harman Samples, a childhood
friend, mentally retarded from fragile X, with whom I shared many noon
hours in school and shared two-stick nickel popsicle with as a boy in
elementary and high school. Harmon's mother, Christine Sample, told me
Harmon provided the physical strength to move and lift his invalid
father before his death.
Much more remains to be done, however, and having co-sponsored
legislation authorizing more research into Fragile X in the past, I
whole heartedly offer my support for H.R. 4365 and encourage my
colleagues to do likewise.
Ms. DeGETTE. Mr. Speaker, I am very pleased to yield 2 minutes to the
gentleman from California (Mr. Waxman), someone who has worked on these
issues for many, many years.
Mr. WAXMAN. Mr. Speaker, I thank the gentlewoman for yielding time to
me.
Mr. Speaker, I rise in support of this bill. I want to commend the
gentleman from Florida (Mr. Bilirakis) and the gentleman from Ohio (Mr.
Brown), our chairman and ranking member, for their work on this
legislation.
[[Page H2715]]
Mr. Speaker, this bill includes many important provisions which will
advance the treatment, the cure, and prevention of childhood diseases
and disorders. I am also pleased to point out that this bill includes
two titles which I have authored. Both titles promise to make
significant advances in the treatment and prevention of childhood
asthma and of autoimmune diseases like multiple sclerosis, juvenile
diabetes, and lupus.
Title V of the bill, the Children Asthma Relief Act of 1999, was
introduced by the gentleman from Michigan (Mr. Upton) and myself, and
title XIX is based on H.R. 2573, the NIH Autoimmune Disease Initiative
Act of 1999, which was authored by the gentlewoman from Maryland (Mrs.
Morella) and myself.
Today more than 5 million children suffer from asthma. It is one of
the most significant and prevalent chronic diseases in America. That is
why this bill provides new funding for pediatric asthma prevention and
treatment programs, allowing States and local communities to target and
improve the health of low-income children suffering from asthma.
As regards the autoimmune diseases, this would expand, intensify, and
coordinate the efforts of NIH in research and education on autoimmune
diseases. There are more than 80 autoimmune diseases, including
multiple sclerosis, lupus, and rheumatoid arthritis, in which the
body's immune system mistakenly attacks healthy tissues.
These diseases affect more than 13.5 million Americans and are major
causes of disability. Most striking of all, three-quarters of those
infected with an autoimmune disease are women.
The research efforts at NIH will be coordinated as a result of an
office that would look at the activities throughout the NIH.
I do want to point out some serious concerns over one section of the
bill, title XII's adoption awareness provisions. This title was the
subject of great controversy and debate. The original language raised
many serious objections regarding adoption and abortion policy.
I hope we will continue to look at this part of the bill, because it
does offer some troublesome issues to be resolved.
Mr. BILIRAKIS. Mr. Speaker, I am pleased to yield 2 minutes to the
gentlewoman from New Jersey (Mrs. Roukema).
(Mrs. ROUKEMA asked and was given permission to revise and extend her
remarks.)
Mrs. ROUKEMA. Mr. Speaker, I certainly thank the chairman for
yielding time to me, and thank him most deeply and sincerely for all
his leadership on this.
Mr. Speaker, all of us recognize the trauma and heartbreak that
parents and all family members endure when serious illness strikes a
child in the family. We must take this step today to set us on the way
to making a happier, healthy life for all our children and for future
generations.
I specifically want to thank Mary Higgins Clark, the notable author,
and her son, David Clark, for reaching out to me on behalf of not only
of her son and grandson, but for the millions of the dear children who
suffer from fragile X.
As has been noted, fragile X is the most common inherited cause of
mental retardation. With this legislation, we are clearly on the brink
of a breakthrough against this tragic mental defect. The research
models that have been identified here in this legislation would put us
well on the road to researching recovery and a cure.
Again, I want to thank those who have brought this to my attention. I
want to thank all those who did the work on this legislation, but
specifically, let me dedicate this research in the name of David
Frederick Clark of Hillsdale, New Jersey.
Ms. DeGETTE. Mr. Speaker, I am pleased to yield 1\1/2\ minutes to the
gentlewoman from California (Mrs. Capps), our distinguished colleague
on the committee.
Mrs. CAPPS. Mr. Speaker, I rise in strong support of H.R. 4365, the
Children's Health Act of 2000.
As a school nurse, a mother, a grandmother, children's health is an
issue that has been of great concern to me throughout my life. This
bill would dedicate more Federal spending to childhood diseases,
including autism, early hearing loss, juvenile diabetes, and many
others.
I want to highlight the new focus on infant hearing loss. I recently
served as a panelist at a briefing on infant hearing held by the
National Campaign for Hearing Health. Every day, 33 newborns leave
hospitals in this country with undiagnosed hearing loss. Yet, only one-
third of all infants are tested for this most common birth defect. More
than half of the infants born today with hearing impairments go
undetected until age two or three, which can have a long-term impact on
language, social, and cognitive skills.
We can do better than that for our children, especially since new and
effective treatments are now available. This legislation will provide
needed grants to develop statewide newborn and infant hearing screening
evaluations and intervention programs and systems.
Mr. Speaker, I urge my colleagues to join parents and grandparents
with children and grandchildren who suffer from these childhood
diseases in supporting this very important bill.
Mr. BILIRAKIS. Mr. Speaker, I am pleased to yield 2 minutes to the
gentleman from South Carolina (Mr. DeMint).
Mr. DeMINT. Mr. Speaker, I thank the gentleman for yielding time to
me.
As the original sponsor of H.R. 2511, the Adoption Awareness Act,
along with the gentleman from Virginia (Chairman Bliley), a champion of
adoption issues, I am pleased to endorse the Infant Adoption Awareness
Act included in the child health bill.
While this language is not as broad as the original legislation, it
does reflect significant efforts to advance the purpose of the Adoption
Awareness Act. This language was drafted with input from a wide variety
of organizations, including those in the adoption and public health
communities.
Women facing unplanned pregnancies deserve to hear about their
options from a well-trained counselor who can provide accurate, up-to-
date information on adoption. This Act provides professional
development for pregnancy counselors in adoption counseling. The
training will enable pregnancy counselors to feel confident in their
knowledge of the adoption process, relevant State and local laws, and
the legal, medical, and financial resources which can be provided to
women with unplanned pregnancies.
Furthermore, there are true experts in the field of adoption
counseling who are extremely familiar with the adoption process from
the viewpoint of the birth mother placing a child for adoption. These
individuals should be the trainers for the pregnancy counselors
receiving the training.
I am pleased to support the Infant Adoption Awareness Act as a step
in the right direction to bring complete and accurate adoption
information to women facing unplanned pregnancies. I hope that this
step significantly advances our Nation in the direction of eliminating
a perceived anti-adoption bias in pregnancy counseling in providing
lasting answers to difficult circumstances.
I truly believe that in our great Nation, while there may be unwanted
pregnancies, there are no unwanted children.
Ms. DeGETTE. Mr. Speaker, I am pleased to yield 1 minute to our
colleague, the gentleman from Iowa (Mr. Ganske), a member of the
committee.
Mr. GANSKE. Mr. Speaker, I thank the gentlewoman for yielding time to
me.
Mr. Speaker, I will vote for this bill. It does many good things. But
Mr. Speaker, I have to ask, if we are going to legislate on this floor
on fragile X, autism, juvenile diabetes, then why do we not address on
this floor the number one public health issue before the country, and
that is the use of tobacco?
It has been well recognized that tobacco companies for a long time
have been targeting kids to get them to smoke. Why? Because nicotine is
one of the most addicting substances known. It is as addicting as
morphine. Those tobacco companies know if they get kids hooked early it
is very, very difficult to get them to quit.
Three thousand kids today will start smoking. One thousand of those
kids will eventually die of a tobacco-related disease. I think it is a
travesty that we
[[Page H2716]]
are not bringing that issue to this floor. I and the gentleman from
Michigan (Mr. Dingell) have a bipartisan bill, the tobacco authorities
bill, that gives the FDA authority to regulate tobacco. It is not a tax
bill, it is not a liability bill. It simply says that those tobacco
companies that have been targeting kids have to stop.
Mr. BILIRAKIS. Mr. Speaker, I yield 1\1/2\ minutes to the gentleman
from Florida (Mr. Stearns).
(Mr. STEARNS asked and was given permission to revise and extend his
remarks.)
Mr. STEARNS. Mr. Speaker, I thank the gentleman for yielding me the
time.
Mr. Speaker, I rise in support of H.R. 4365 and applaud the chairman
for the work he is doing here. He has lots of Members who want
priorities. I think this is a very important bill.
Part of the bill is this adoption awareness, and specifically infant
adoption awareness ensures that family planning counselors have access
to training on presenting complete and accurate adoption information
and referrals to women facing unplanned pregnancies.
Two, the special needs adoption awareness directs the Secretary of
Health and Human Services to make grants to carry out a national
campaign to provide information to the public on adoption of special
needs children, establishes a toll-free telephone line for providing
information, makes grants to support groups for adoptive parents, and
for research on reasons for adoption disruptions.
I think this is extremely important here in Congress to realize that
adoption awareness is a solution for many women. I applaud the chairman
for all the work he is doing. I am pleased to be a cosponsor and to
provide support.
Mr. BROWN of Ohio. Mr. Speaker, I yield 2 minutes to my friend, the
gentlewoman from California (Ms. Roybal-Allard).
Ms. ROYBAL-ALLARD. Mr. Speaker, I rise in support of H.R. 4365, and
would like to focus on one element of this bill, the Folic Acid
Promotion and Birth Defects Prevention Act, which I introduced last
year with the gentlewoman from Missouri (Mrs. Emerson).
This provision will help prevent an estimated 2,500 U.S. babies a
year from being born with serious birth defects of the brain and spine,
such as spina bifida. Added to this tragedy is the fact that up to 70
percent of these birth defects can be prevented if women of
childbearing age consume 400 micrograms of folic acid daily.
Unfortunately, thousands of U.S. women are unaware of this fact. The
Folic Acid Promotion and Birth Defects Prevention Act in this bill
addresses this problem by authorizing the Centers for Disease Control
to launch a national education and public awareness campaign to inform
women of the benefits of folic acid.
Like so many public health needs, common sense tells us that devoting
a few extra dollars to this problem today will save thousands of
dollars in future health care costs, but more importantly, will prevent
the occurrence of these tragic birth defects.
On behalf of our Nation's families, I urge my colleagues to support
H.R. 4365.
Mr. BROWN of Ohio. Mr. Speaker, I yield 2 minutes to the gentleman
from Texas (Mr. Bentsen).
(Mr. BENTSEN asked and was given permission to revise and extend his
remarks.)
Mr. BENTSEN. Mr. Speaker, I rise in strong support of H.R. 4365, the
Children's Health Act of 2000.
I want to focus on one point of this bill. While I support every part
of it, particularly the pediatric research, I want to talk a little bit
about the graduate medical education part of this bill, because I have
the honor of representing the Texas Medical Center, which is the
largest Medical Center in the world and includes the largest children
hospital, Texas Children's Hospital, as well as Hermann Children's
Hospital in the Harris County Hospital District.
{time} 1445
That being said, there is a great deal of clinical research that is
done through graduate medical education at Children's Hospital which is
not reimbursed because our medical education system is funded through
the Medicare program and really does need to be restructured.
This bill is the first step following up on what we did last year in
funding, at least in part, some of that medical education that is
conducted at children's hospitals. Congress should go a lot further,
frankly, but I am pleased that this bill includes that.
Mr. Speaker, let me say what I regret about this bill. What I regret
is where it is lacking, and that is in the Medicaid program itself.
There are 3 million children, including 800,000 children in my home
State of Texas, who are eligible for Medicaid but not enrolled in the
program. Texas leads the Nation in the number of children, nearly a
million children, not enrolled in the program.
The gentlewoman from Colorado (Ms. DeGette) and myself have both
offered bills that would begin to address this problem and bring these
children into the system. This creates an even greater burden in our
children's hospitals because when these kids get sick, they end up at
the children's hospitals and we pay for it through the disproportionate
share program. The fact is they ought to be enrolled in the Medicaid
program and getting the preventive health care they need, instead of
showing up at the emergency room at the last minute at a much higher
cost structure.
So I regret the fact that the committee chose not to include these
bills in this bill. I think overall, this is a good bill. But I would
hope that the Committee on Commerce will move swiftly to bring these
children into the Medicaid program and start to address this problem.
And I think by doing that, we will not only be doing a lot for these
kids, but we will be doing a lot for our children's hospitals
throughout the country.
Mr. BILIRAKIS. Mr. Speaker, I yield 2 minutes to the gentlewoman from
Maryland (Mrs. Morella).
Mrs. MORELLA. Mr. Speaker, I thank the gentleman from Florida (Mr.
Bilirakis) for yielding the time to me, and I certainly commend the
gentleman for his leadership, along with the leadership of the
gentleman from Ohio (Mr. Brown), ranking member, for this legislation,
the Children's Health Act of 2000. I strongly support it.
Mr. Speaker, the bill attempts to foster Federal and State
cooperation in creating public awareness about some of the devastating
effects of disorders such as autism, epilepsy, fragile X, asthma and
skeletal cancer in children.
I am pleased that it authorizes the Director of NIH to expand
programs and activities dealing with autoimmune diseases, including the
formation of coordinating committee and advisory councils to develop
NIH activities in this area and report to Congress on how funds are
being spend on autoimmune diseases.
Mr. Speaker, let me put a face on these dreaded diseases. They
include juvenile diabetes, juvenile arthritis, rheumatic fever, Crohn's
disease, pediatric lupus, Grave's disease, Evans syndrome, autoimmune
hepatitis, primary biliary cirrhosis, and the list goes on and on.
There have been so few epidemiology studies on the prevalence of
these diseases in children that we can only give a best effort estimate
that upwards of 9 million pediatric and adolescent children are
afflicted with one or more autoimmune diseases. The lack of
epidemiology studies clearly shows that there is a need for
comprehensive approach to research in these areas.
This is a comprehensive approach; this is a comprehensive bill. It is
a bill that I urge my colleagues to support unanimously, H.R. 4365.
Mr. BROWN of Ohio. Mr. Speaker, I yield 2 minutes to the gentlewoman
from New York (Mrs. Lowey).
Mrs. LOWEY. Mr. Speaker, I rise in strong support of H.R. 4365. By
expanding pediatric research efforts and providing additional resources
for a number of diseases which afflict children, this bill will go a
long way toward improving health care for our children and enhancing
their health and safety.
As the main Democratic sponsor of the Safe Motherhood Monitoring and
Prevention Research Act, I am particularly pleased that H.R. 4365
includes provisions to ensure that maternal health and safe motherhood
research and programs are top public health priorities.
As we all know, the CDC is the premier source of health surveillance
in
[[Page H1717]]
this country, and for the past 13 years they have been monitoring the
maternal deaths, risks, and complications through the Pregnancy
Mortality Surveillance System. The CDC also assists States in
determining which women may be at increased risk for pregnancy-related
complications and what types of interventions can decrease these risks
through the Pregnancy Risk Assessment Monitoring System or PRAMS.
While most of us think that childbirth and pregnancy are completely
safe, CDC's research tells us otherwise. According to the CDC, two to
three women die each day from pregnancy-related conditions and nearly
5,000 women experience major complications either before or after labor
begins. Even more disturbing is the news that black women are four
times more likely and Hispanic women 1.7 times per likely to die during
pregnancy than their white counterparts and that access to prenatal
care does not close this gap.
That is why it is critical that we give the CDC the tools they need
to collect data, investigate maternal deaths, research risks, and
examine problems like domestic violence during pregnancy. Armed with
that information and research, the CDC will also get the word out to
women who need it most and the doctors who serve them.
Mr. Speaker, no woman should die due to pregnancy in 2000. So as we
approach Mother's Day, I am delighted that this bill will enable CDC to
do its good work.
The SPEAKER pro tempore (Mr. Barrett of Nebraska). The gentleman from
Ohio (Mr. Brown) is advised that he has 30 seconds remaining, as does
the gentleman from Florida (Mr. Bilirakis).
Mr. BROWN of Ohio. Mr. Speaker, I yield myself such time as I may
consume.
Mr. Speaker, I ask House support of H.R. 4365. This legislation has
been a good faith effort with the gentleman from Florida (Mr.
Bilirakis), my office, and this committee working together. It will
mean an absolute difference in children's lives; children who have
often been ignored by the system in juvenile arthritis or juvenile
diabetes and tests conducted not always for children and the unique
diseases they have.
Mr. Speaker, I ask House support of this legislation.
Mr. Speaker, I yield back the balance of my time.
Mr. BILIRAKIS. Mr. Speaker, I yield myself the balance of my time.
Mr. Speaker, an awful lot of blood, sweat and tears has gone into
trying to secure a better future for our children by helping to reduce
the incidence of disease and illness. I thank my Committee on Commerce
colleagues, particularly the gentleman from Ohio (Mr. Brown) and I
applaud all the Members for having the good sense to set aside some of
our partisan agendas in order to improve the lives of our children and
all of their families throughout this country. I ask all of the Members
to support this legislation.
Mr. WEYGAND. Mr. Speaker, while I am in support of H.R. 4365, the
Child Health Research and Prevention Amendments, this bill should not
be on the floor today under the suspension of the rules--where no
member can offer an amendment to strengthen and improve this bill.
I commend those of my colleagues who drafted this bill in the back
rooms of Congress. They have drafted a good piece of legislation. But
Congress works best when more than a minority of the members are
involved in developing legislation. As a cosponsor of H.R. 3301, the
base bill for this new draft legislation, I will vote in favor of the
bill on the floor today. Make no mistake, however, that thousands of
extremely ill children are being ignored by the House of
Representatives today.
Well over a month ago, my staff contacted the Commerce Committee--
both the majority and the minority--asking if this bill could also
direct the NIH to review their work on children with the rare illness
``Hutchinson-Gilford Progeria Syndrome,'' similar to the study being
asked for in the bill regarding Friedreich's ataxia. Other members of
the House worked with me on this effort. I also joined with a member of
the Majority to inquire if we could similarly add Spinal Muscular
Atrophy to the same section of the bill. These measures are not in the
bill today, and this process--which bars amendments--has kept these
children and thousands of others from being heard, and helped by this
bill.
In fact, this bill has not been open to amendments at any point since
its introduction. Two committee mark-up sessions for this bill were
canceled, and yet we are here voting for final passage! I ask you, Mr.
Speaker, why has the leadership forgone the democratic process in order
to pass a children's health bill? I would say it is because of tobacco
and guns, the soft spot on the heart of the Republican leadership.
The failure of the leadership with regard to this bill represents a
terrible missed opportunity for thousands of sick children. Because the
Republican leadership couldn't stomach a vote on tobacco or gun
safety--both huge problems for children's health--we bypassed regular
order. That act has forced the House to forgo working together to
develop a bill that could have helped even more children. My efforts to
improve the bill are only one of 435 stories of members in this body.
We have not only ignored the democratic process, we have ignored the
needs of thousands of children in order to avoid some tough votes.
Shame on the leadership for failing our nation's children--not
through the good of this bill, but through the leadership's failure to
do even more for children.
Mrs. EMERSON. Mr. Speaker, it is with pleasure that I speak in
support of this essential Children's Health Act of 2000. There are many
of us who have worked very hard to get to this day, and I applaud the
Commerce Committee and Mr. Bilirakis and Mr. Brown for getting a
consensus on this bill so it could come to the floor.
I represent 26 rural counties in Southern Missouri. These counties
are home to some of the most poverty stricken communities in the State.
Most of them lack even basic health care services. And many lack decent
roads and reliable phone service. Many people in these communities find
themselves isolated from their extended family, their friends and their
neighbors.
Many young mothers-to-be in my rural district are isolated from
family and friends--and they live miles away from nurses and doctors.
This isolation often prevents them from getting prenatal care and adds
to the fears and uncertainties that come along with being a new or
expectant mother. Many American women fall through the cracks of our
health system. Women throughout our nation face great challenges in
securing healthy pregnancies and healthy children.
Consider the following: At the turn of this century more American
women died in childbirth than from any other cause except for
tuberculosis. At the close of this century, after all of the medical
advances made in this country, it's easy to assume that today pregnancy
and childbirth are safer for American women and their babies.
But this is a false assumption.
Last June, the CDC released a report that makes it painfully clear
that the promise of safe motherhood is eluding too many women. In fact,
during the past 15 years alone, total maternal deaths have not declined
one bit in our nation. Just think of it. Today, tuberculosis claims
about one American life out of 1,000 a year. But 2-3 women out of
10,000 lose their lives each day due to pregnancy-related conditions.
And out of 1,000 live births in our country each year, 8 babies die.
More infants die each year in the United States than in 24 other
developed nations.
As a Member of Congress and as a mother of four daughters, this
maternal and infant mortality rate is simply unacceptable. We've got to
find out why safe motherhood is still out of reach for so many American
women. I am very proud to join many of my esteemed colleagues in
supporting this legislation that will have significant progress of
maternal and infant health in this country.
The legislation includes several provisions that my colleague Nita
Lowey and I introduced as a stand alone bill, Safe Motherhood
Monitoring and Prevention Research Act of 1999, which are especially
beneficial to pregnant women, infants, and children.
The Safe Motherhood Portion of the bill achieves 3 key goals, all
necessary components to true progress in the enhancement of material
and infant care.
First, it expands CDC's Pregnancy Risk Assessment Monitoring System
(PRAMA) so that all 50 states will benefit from a public health
monitoring system of pregnancy-risk related factors.
Second, this bill authorizes an increase in federal funding for
preventive research, so we can identify basic health prevention
activities to improve maternal health.
The third and final component of this section of the bill directs the
Secretary to help states and localities create public education and
prevention programs to prevent poor maternal outcomes for American
women.
In addition, this bill emphasizes the need to expand existing
prevention programs and pregnancy risk assessment systems to include
those areas of the country where underserved and at-risk populations
reside.
Finally, I am also pleased that this bill includes many of the
provisions in a bill I introduced last year called the Healthy Kids
2000
[[Page H2718]]
Act. This bill expands the opportunities for Pediatric Research by
creating a pediatric research initiative within NIH, promotes the use
of folic acid as a way to prevent birth defects, and creates a national
Center on Birth Defects and Developmental Disabilities.
There are so many wonderful parts of this bill. On behalf of our
youngest and most vulnerable citizens, I urge my colleagues to Vote for
the Children's Health Act of 2000, and I urge the Senate to take action
on this bill to move the process forward.
Mr. TIERNEY, Mr. Speaker, I commend the bipartisan effort that has
produced this important bill, H.R. 4365, the Children's Health Act of
2000. I understand that in the spirit of cooperation, many amendments
to this bill were laid aside in order to bring this legislation to the
floor and ensure that the urgently needed programs included in H.R.
4365 were not jeopardized by disagreements on other matters.
I would like to mention one change to the bill that I believe is
quite worthy and would not raise controversy. Had this bill come up
under a rule rather than as a suspension, Mr. Weygand and I would have
sought an amendment to include Hutchinson-Gilford Progeria Syndrome
under Section 2201 of the bill as one of the rare childhood diseases on
which NIH would have to report its activities.
This syndrome, commonly known as Progeria, is a genetic condition
that manifests itself as accelerated aging in children. While it is
quite rare, with an estimated incidence of roughly one in every 8
million newborns, Progeria is devastating. The average life span of an
affected child is 13 years, and the disease is, without exception,
fatal. Up until now, there has been little to no NIH research directly
in this area. However, such research has the potential to benefit many
individuals in addition to the victims of Progeria. According to Dr.
Ted Brown, Professor and Chairman of the Department of Human Genetics
at the New York State institute for Basic Research, ``Finding a cure
for Progeria may provide keys for treating millions of people with
heart disease associated with natural aging.''
Requiring the NIH report on activities relating to rare childhood
diseases to include Progeria as one of those conditions is thoroughly
consistent with the purpose of the bill before us today, and we thank
the sponsors and managers of the bill who have been sympathetic to our
suggested change. However, because of the process by which H.R. 4365
came to the floor, it was not possible to include this important and
justified amendment. Mr. Weygand and I hope that the Senate's
consideration of this legislation will proceed in a more deliberative
manner, and we will work with our Senate counterparts to include
Progeria language when this bill moves in the other Congressional
chamber. It is our hope that the bill that emerges from conference will
contain language bringing much-needed attention to this underrecognized
and tragic condition.
Mr. BLILEY. Mr. Speaker, I commend the gentlemen from Florida and
Ohio for introducing H.R. 4365, the Children's Health Act of 2000. This
important legislation, introduced by Representatives Bilirakis and
Brown, contains a host of significant provisions that, when enacted
into law, will improve the lives of untold numbers of children and
families throughout this country.
Though too numerous to mention each provision individually, I want to
comment on a few that I believe are parrticularly important. This Act
makes important strides in the fight against autism--a heart-breaking
condition. Autism is a serious disease, affecting 1 in every 500
children born today. More prevalent than Down's syndrome, childhood
cancer or cystic fibrosis, it hits children during the first two years
of life and causes severe impairment in language, cognition and
communication.
As a proud adoptive father of two, I am pleased that this Act also
advances adoption policy in this country by ensuring family planning
counselors have access to training on presenting complete and accurate
adoption information to women facing unplanned pregnancies. In the
interest of time, I ask that I be permitted to extend my remarks for a
more full discussion of this aspect of the legislation. Moreover, this
bill contains several initiatives that will foster the adoption of
special needs children. The Act also authorizes the Healthy Start
program for the first time. For at-risk pregnant women served by this
program, it authorizes ultra-sound screening and expands access to
surgical services to the fetus, mother, and infant during the first
year after birth.
The Act will enable the families of children who have had an adverse
reaction to rotavirus vaccine to receive compensation under the vaccine
injury compensation program. It extends the authorization of
appropriations for graduate medical education in children's hospitals--
an authorization that the Commerce Committee initiated in a bill signed
into law last year.
The list goes on: the Act will bring help to children suffering from
juvenile diabetes, pediatric asthma, juvenile arthritis, birth defects,
hearing loss, epilepsy, skeletal malignancies, traumatic brain injury,
dental disease, and a wide range of autoimmune diseases. It also
ensures that our nation's organ transplantation system recognizes
children's unique health care needs.
It is important that the Members of this House vote for passage of
this critically important bill to secure a better future for America's
children by helping to reduce the incidence of disease and illness. We
know we can lessen the incidence of these diseases through heightened
research activities, and through the use of successful interventions
that still remain out of reach by many in our society.
Again, I thank my Commerce Committee colleagues and many other
Members who have contributed to this bill. By voting to pass this bill,
I applaud those Members for having the good sense to set aside some of
our more partisan agendas in order to do a good work for our children
and all of their families throughout this country.
Ten months ago, Congressman Jim DeMint of South Carolina and I
introduced H.R. 2511, the Adoption Awareness Act. During consideration
by the Committee on Commerce, the language of H.R. 2511 changed but the
central purpose remained the same: the Infant Adoption Awareness Act
ensures that counselors in health clinics and other settings provide
women who have unplanned pregnancies complete and accurate information
on adoption.
As Chairman of the Commerce Committee, I have been responsible for
the negotiations leading to the Infant Adoption Awareness Act for these
many months, and I want to take this opportunity to explain the bill at
length to my colleagues in case there is any confusion with the text of
the original Adoption Awareness Act, H.R. 2511.
What struck Congressman DeMint and me was that the studies and
statistics available in this field show a lack of activity which may
well reflect an anti-adoption bias in pregnancy counseling. According
to a University of Illinois study by Professor Edmund Mech,
Orientations of Pregnancy Counselors Toward Adoption, 40 percent of
self-identified ``pregnancy counselors'' in settings such as health,
family planning, and social service agencies do not even raise the
issue of adoption with their pregnant clients. Of the 60 percent who
raise the issue of adoption in some form, 40 percent provide inaccurate
or incomplete information. Furthermore, while pregnancy counselors
themselves may not have a negative bias towards adoption, they
presuppose that their client is not interested and therefore do not
present adoption as a true option for women facing unplanned
pregnancies (Source: Mech, Pregnant Adolescents: Communicating the
Adoption Option). The Infant Adoption Awareness Act would set up a
training program by which clinic workers and others could receive
professional inservice training in educational adoption counseling. By
being properly trained, these counselors would be equipped to provide
valuable information on adoption to their clients.
While many societal factors have changed in the last twenty years,
including the acceptance of non-marital teen parenting, the
availability of welfare, and increased availability of abortion
services, there has been a dramatic drop in the number of adoptions
among live births to unwed mothers. Prior to 1973, an adoption
placement occurred for almost one of every ten premarital births. By
the 1990s, the number had dropped to an adoption placement for one of
less than every hundred premarital births. A long-term study of the
Adolescent Family Life (AFL) pregnancy programs which included an
adoption counseling component showed that--given necessary adjustments
for client and community characteristics--more women chose to place
their child for adoption when enrolled in an AFL Care project which
provided adoption counseling as a part of pregnancy resolution
decision-making (Source: McLaughlin and Johnson, Battelle Human Affairs
Research Centers, The Relationship of Client and Project
Characteristics to the Relinquishment Rates of the AFL Care
Demonstration Projects). Thus, this Act intends to ensure that the
public health and other professionals coming in contact with a high
percentage of women facing unplanned pregnancies--often unwed
adolescents--are properly prepared to have a complete and accurate
discussion of adoption.
The Act allows for a six month period in which representatives of the
adoption community come together to adopt or develop best-practices
guidelines for counseling on adoption to women facing unplanned
pregnancies. Specifically, the Secretary should include representatives
of diverse viewpoints in the adoption community, including
organizations representing agencies arranging infant adoptions,
adoption attorneys, adoptive parents, social services, and appropriate
groups representing the adoption triad (birth parents, infant, and
adoptive parents). Organizations with significant expertise and history
in this arena include
[[Page H2719]]
the National Council For Adoption, Loving and Caring, Bethany Christian
Services, the American Academy of Adoption Attorneys, and the American
Bar Association Family Law Section's Adoption Committee and these
organizations should be represented on the panel. While recognizing the
sensitivity of making an adoption decision, the organizations
represented should be those which promote adoption in a realistic,
positive manner as beneficial to the birth parents, child, and adoptive
parents. The best-practices guidelines should focus on the essential
components of adoption information and counseling to be presented
during a pregnancy counseling session. Furthermore, the guidelines
should include important variables to be presented, such as state laws
on adoption, and available medical, legal, and financial resources.
Previous curricula developed for these purposes should be the starting
point and, as an interim set of guidelines, be determinative.
The role of the public health clinics on the panel developing the
best practices guidelines (and organizations representing their
interests, such as the Family Planning Councils of America) is to
ensure the guidelines are relevant to the health clinic setting. The
experts in adoption counseling, including those who have a history of
developing and delivering training or tools to teach adoption
counseling, should shape the best-practices guidelines to provide an
excellent model for presenting adoption to women facing unplanned
pregnancies. Since different attitudes towards adoption exist
throughout the country which can be attributed to racial, ethnic,
religious, social, and geographic differences, the best-practices
guidelines should act as a blueprint or model while still allowing
localities the flexibility to address their local situation. Therefore,
the best-practices guidelines would be a model which could be tailored
to address the individual needs of the pregnant woman.
After the best-practices guidelines are developed, the Secretary
shall make grants to adoption organizations to carry out training,
which will often be training trainers, to teach pregnancy counselors
how to present complete and accurate information on adoption. The
guidelines are meant to be the basis for the adoption, improvement, or
development of a training curriculum by grantees. Furthermore, the
grantees can carry out the training programs directly or through grants
or contracts with other adoption organizations. For instance, a
national office could subgrant or contract with local affiliates
throughout the nation or a region thereof. The Secretary should use
discretion in ensuring that all regions of the nation will have
adequate access to the training without having duplicate services in an
area with a small number of eligible health clinics. There are no
geographic limitations on where the trainers should be trained. The
intent is to provide for training of trainers, often on a statewide or
regional basis, so truly expert trainers can teach others.
The trainers should be highly qualified individuals with an expertise
in adoption counseling. ``Adoption counseling'' in the adoption
community implies an in-depth discussion of adoption which includes
knowledge of various types of adoption and familiarity with the
viewpoint and challenges of birth mothers, putative fathers, adoptive
parents, and the best interest of the child. Trainers should have
experience in providing adoption information and referrals in the
geographic area of the eligible health centers. With a knowledge of
state laws and access to local support networks, a trainer will be able
to provide a more extensive review of local information and resources
to the pregnancy counselors. The most essential component of the
training, however, is to teach pregnancy counselors how to accurately
and completely present adoption as an option to their clients and to
ensure counselors are able to answer the frequently asked questions
clients have regarding adoption.
The Infant Adoption Awareness Act refers to pregnancy counselors
providing adoption information and referrals as a part of pregnancy
counseling. It is important to note that handing a client a piece of
paper or booklet explaining the adoption process and providing phone
numbers of agencies or attorneys for adoption referrals does not
constitute adoption information and referrals. Adoption information
means a counselor is able to fully explore the option of adoption with
a client. This includes answering relevant questions such as the types
of adoptions, financial and medical resources for birth mothers, and
state laws regarding relinquishment procedures and putative father
involvement. Referral upon request includes following the procedures of
the health clinic to make an appointment for the client and follow-up
as necessary. Referral may be made to an in-house adoption provider,
such as a staff member of a licensed adoption agency. Since adoption is
explored in the context of pregnancy counseling sessions in which
counselors and clients have a limited amount of time, it is essential
that the counselors provide complete and accurate summary information
to their clients at that time.
The intent of this Act is to ensure that pregnancy counselors are
well-trained, knowledgeable and comfortable presenting adoption to
their clients. While adoption may not be the right choice for every
woman facing an unplanned pregnancy, each woman should be presented
adoption information to make a well-informed decision. Many women have
not thought of the possibility of adoption, do not know how to explore
the details of adoption, or have misconceptions of the adoption process
which hinder their consideration of the alternative of adoption. Since
pregnancy counselors act as an important resource for these women, they
must be equipped to fully address the option of adoption with their
clients.
The adoption organizations eligible to receive grants for training
(or subgrants or contracts) are those national, regional, or local
private, non-profit institutions among whose primary purposes is
adoption, and are knowledgeable on the process of adopting a child and
on providing adoption information and referrals to pregnant women.
These adoption organizations must work in collaboration with existing
Health Resources Services Administration (HRSA) funded ``training
centers.'' Of particular importance is the organization's experience in
explaining the process involved to the birth mother placing the child
for adoption. It is essential that adoption is among the primary
purposes of the entity, as it should be organizations with true experts
in adoption counseling who are training pregnancy counselors.
Health centers which are eligible to have staff receive training are
public and nonprofit private entities that provide health-related
services to pregnant women. The designated staff of the health centers
means the counselors who will interact and provide counseling to women
with unplanned pregnancies. The designated staff members are those who
provide pregnancy or adoption information and referrals (or will
provide such information and referrals after receiving training).
Furthermore, while the Act sets out those health centers which should
receive priority in being trained, nothing should be construed to
prohibit those who provide counseling in other settings, such as on
military bases and corrections facilities, to be eligible to
participate in the adoption counseling training sessions.
The grant is conditioned on the agreement of the adoption
organization to make reasonable efforts to ensure that the eligible
health centers which may receive training under this grant include, but
are not limited to, those that receive federal family planning funding,
community health centers, migrant health centers, centers for homeless
individuals and residents of public housing and school-based clinics.
The Secretary has the duty to provide eligible health centers (which
receive funding under Section 330 and 1001) with complete information
about the training available from the adoption organizations receiving
the training grants. Furthermore, the Secretary has the duty to
encourage eligible health centers to have their designated staff
participate in the training. The Secretary must make reasonable efforts
to encourage staff to undergo training within a reasonable period after
the Secretary begins making grants for such training. The grantees will
cover the costs of training the designated staff and reimbursing the
health center for costs associated with receiving the training.
Adoption counseling training is a type of professional development for
pregnancy counselors and should be reimbursed on a similar basis as
other professional development activities which staff receive in the
local area.
Within one year, the Secretary shall submit to the appropriate
Committees of Congress a report prepared by an independent evaluator,
paid for by funds set aside under this Act evaluating the extent to
which adoption information, and referral upon request, is provided by
eligible health centers. The study should be scientifically-based and
sufficiently broad so as to gain an understanding of the current
practices of providing adoption information in Federally funded health
clinics throughout the country. This should include the attention given
to adoption relative to other options discussed in pregnancy
counseling. Further, the study should indicate how often and in what
form (written, verbal) adoption information is offered, the
completeness and accuracy of the adoption information provided, and
non-identifying information about the options ultimately chosen by
clients.
Within a reasonable period of time, the Secretary shall submit to the
appropriate Committees of Congress a report evaluating the extent to
which adoption information, and referral upon request, is provided by
eligible health centers to determine the effectiveness of the training.
The study should be scientifically-based, that is, more than a
checklist asserting that adoption counseling, information, or referral
has been provided, and focus on those health centers in which
designated staff have been provided training through this Act. In
conducting these studies, the Secretary shall ensure that the research
does not allow any interference in the provider-patient relationship,
any breach of patient confidentiality, or
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any monitoring or auditing of the counseling process which breaches
patient confidentiality or reveals patient identity.
Funding for research in adoption counseling practices has been
sporadic at best. Despite the acknowledged need to ensure pregnancy
counselors can present adoption in a positive, accurate manner, funding
for such studies has not materialized in proportion to the need. The
Adolescent Family Life Program in the Office of Population Affairs
provided for limited studies in the 1980s and follow-up studies on the
effectiveness of the AFL Demonstration Programs into the early 1990s.
The Office of Adolescent Pregnancy Programs in the 1990s proposed an
objective of increasing to 90 percent the number of pregnancy
counselors who are able to counsel on adoption in a complete, accurate
manner. With a change of Administration, this goal never materialized
as one of the priorities of the Public Health Service. Furthermore,
plans for follow-up study by the Department of Health and Human
Services to determine if the orientations of pregnancy counselors
toward adoption had changed were dropped in 1995. Thus, research in
this area is of critical importance.
Additionally, there is an understanding that this Act would include
``charitable choice'' language allowing faith-based organizations to
compete for grants on the same basis as any other non-governmental
provider without impairing the religious character of such institution,
upon agreement by the White House and House Leadership on ``charitable
choice'' language for other legislation. Under charitable choice, the
Federal Government cannot discriminate against an organization that
applies to receive such a grant on the basis that the organization has
a religious character and programs must be implemented consistent with
the Establishment and Free Exercise Clauses of the United States
Constitution. While following the agreed upon charitable choice model,
the language must be crafted to conform it to the purpose and structure
of this Act.
While we have come a long way, much work remains to be done. I look
forward to working with my colleagues on the Appropriations Committee
on this adoption priority and with members of the other body to enact
this important provision into law this year, on which better and more
humane Federal policies can be built in the future.
Mr. DINGELL. Mr. Speaker, I am in support of H.R. 4365, the
Children's Health Act of 2000. This bill is an important first step
toward improving the health and well-being of our nation's next
generation.
H.R. 4365 enhances the national research infrastructure and
reinforces surveillance and prevention initiatives for such conditions
as fragile X, autism, asthma, juvenile arthritis, childhood
malignancies, traumatic brain injury, hepatitis C, and immediate
adverse reactions to vaccines. I am particularly pleased to see two
provisions that reflect the tireless efforts of my colleague Diana
DeGette: one to advance the quest for a treatment and cure for
juvenile-onset diabetes, and the second to improve pediatric organ
transplant services. H.R. 4365 also strengthens existing activities to
promote the use of folic acid in the prevention of certain birth
defects, a measure that will reduce human suffering and save healthcare
dollars.
Other highlights of the bill include the expansion of oral health and
epilepsy treatment services to undeserved children, and the
reauthorization of the Healthy Start initiative, a demonstration
program established to reduce infant mortality and improve pregnancy
outcomes.
Investments in America's researchers are also evidenced in H.R. 4365
through the extension of authorized appropriations to children's
hospitals for the cost of graduate medical education. The bill enhances
biomedical pediatric research by establishing a Pediatric Research
Initiative within NIH, and centralizes the coordination of NIH research
activities in the area of pediatric autoimmune disorders. Finally, to
attract the most promising young research minds in the country to work
on often overlooked childhood disorders, the bill contains loan
repayment programs for biomedical researchers and physician-scientists.
Regrettably, however, this children's health bill is not the best we
could do for America's children. A number of my colleagues had
amendments that would have strengthened H.R. 4365, but the irregular
procedures used by the majority for the bill blocked their
consideration. These include, but are not limited to: (1) supplementing
S-CHIP and Medicaid to provide seamless access to state-of-the-art
prenatal services to all pregnant women; (2) assuring equal access to
pediatric specialists, medically necessary drugs and clinical trials
for children with rare and/or serious health problems; (3) attending to
state-by-state disparities in new born screening for genetic diseases
by authorizing HHS to carry out the recommendations of the Task Force
on Newborn Screening, an issue of deep concern to my colleague Mr.
Pallone; and (4) an excellent proposal by my good friend Mr. Towns for
establishing guidelines for the administration of psychotropic
medications to children under five.
An even more glaring omission from this bill is the lack of a
provision to restore FDA's jurisdiction over the regulation of youth
tobacco use. This issue was thoughtfully raised in legislation
introduced by my colleague, Dr. Greg Ganske, which enjoys a broad base
of bipartisan support. The process by which the legislation comes
before us today is characterized by the majority's determination to
block any discussion of this important issue.
I have additional concerns about the difficulties that will arise for
this particular Children's Health bill, H.R. 4365, as companion
legislation is crafted by the Senate. Title XII, the Infant Adoption
Awareness Act of 2000, has drafting problems, and leaves the bill
vulnerable to a host of family planning and adoption issues that are
beyond the agreed upon scope of this Children's Health bill.
I will be one of the first to suggest that adoption is an important
national issue. As of March 31, 1999, America had 117,000 children in
the public foster care system who are awaiting adoptive parents and a
permanent place to call ``home.'' This represents an increase of over
7,000 children since 1998, perhaps in part because Public Law 105-89,
the Adoption and Safe Families Act has made more foster children, who
are unable to return home safely, available for adoption. Something is
wrong, however, when adoptive parents tell us that it is easier to
pursue an international adoption than to adopt a special needs child
from America.
If we wanted to address adoption issues, we should have considered
legislation sponsored by Senator Levin that the Senate has passed three
times. It would facilitate the creation of a national voluntary reunion
registry. In the era of genetic medicine, with its emphasis on family
medical history information, this not only makes sense as public
policy, but addresses the life-long psychological issues that often
shroud the adoption process. Again, irregular procedures blocked mere
discussion of this issue.
Mr. Speaker, I will support this bill. I do so, however, with the
fervent belief that we can, and should, do more for America's children
than is reflected in H.R. 4365. The children of every district in this
nation have waited too long for the many laudable provisions in the
bill; but they also deserve more, and they deserve it soon.
Mr. Bilirakis. Mr. Speaker, I yield back the balance of my time.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from Florida (Mr. Bilirakis) that the House suspend the rules
and pass the bill, H.R. 4365, as amended.
The question was taken.
Mr. BILIRAKIS. Mr. Speaker, on that I demand the yeas and nays.
The yeas and nays were ordered.
The SPEAKER pro tempore. Pursuant to clause 8 of rule XX and the
Chair's prior announcement, further proceedings on this motion will be
postponed.
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