106th CONGRESS
2d Session
H. R. 4365
AN ACT
To amend the Public Health Service Act with respect to children's health.
HR 4365 EH
106th CONGRESS
2d Session
H. R. 4365
AN ACT
To amend the Public Health Service Act with respect to children's
health.
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. 2. Table of contents.
TITLE I--AUTISM
Subtitle A--Surveillance and Research Regarding Prevalence and Pattern of
Autism
Sec. 102. Surveillance and research programs; clearinghouse; advisory
committee.
Subtitle B--Expansion, Intensification, and Coordination of Autism
Activities of National Institutes of Health
Sec. 112. Expansion, intensification, and coordination; information and
education; interagency coordinating committee.
TITLE II--RESEARCH AND DEVELOPMENT REGARDING FRAGILE X
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
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. 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. 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. 902. Monitoring; prevention research and other activities.
Subtitle B--Pregnant Mothers and Infants Health Promotion
Sec. 912. Programs regarding prenatal and postnatal health.
TITLE X--REVISION AND EXTENSION OF CERTAIN PROGRAMS
Subtitle A--Pediatric Research Initiative
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. 1202. Grants regarding infant adoption awareness.
Subtitle B--Special Needs Adoption Awareness
Sec. 1212. Special needs adoption programs; public awareness campaign
and other activities.
TITLE XIII--TRAUMATIC BRAIN INJURY
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. 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. 1702. Content of petitions.
TITLE XVIII--HEPATITIS C
Sec. 1802. Surveillance and education regarding hepatitis C.
TITLE XIX--NIH INITIATIVE ON AUTOIMMUNE DISEASES
Sec. 1902. Juvenile diabetes, juvenile arthritis, lupus, multiple
sclerosis, and other autoimmune-diseases; initiative through Directior 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. 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.
`(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.
`(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.
`(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.
`(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.
`(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:
`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.
`(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;
(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
(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).
`(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.
`(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 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;
`(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 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.
`(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 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--
(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.';
(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--
(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';
(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 the 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.
`(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.
`(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 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.
`(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.
`(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').
`(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--
`(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, Sjo.AE4gren'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.
`(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.
`(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
(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.
Passed the House of Representatives May 9, 2000.
Attest:
Clerk.
END