HR 3301 IH
106th CONGRESS
1st Session
H. R. 3301
To amend the Public Health Service Act with respect to children's
health.
IN THE HOUSE OF REPRESENTATIVES
November 10, 1999
Mr. BILIRAKIS (for himself, Mr. BROWN of Ohio, Mrs. EMERSON, Mr. TOWNS, Mr.
GREENWOOD, Mr. UPTON, Ms. DEGETTE, Mr. SMITH of New Jersey, Mr. WAXMAN, and Mr.
WALSH) introduced the following bill; which was referred to the Committee on
Commerce
A BILL
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 Research and Prevention
Amendments of 1999'.
SEC. 2. TABLE OF CONTENTS.
The table of contents for this Act is as follows:
Sec. 2. Table of contents.
TITLE I--REVISION AND EXTENSION OF PROGRAMS
Subtitle A--Pediatric Research Initiative
Sec. 102. Establishment of a pediatric research initiative.
Sec. 103. Investment in tomorrow's pediatric researchers.
Subtitle B--Other Programs
Sec. 111. Childhood immunizations.
Sec. 112. Screenings, referrals, and education regarding lead
poisoning.
Sec. 113. Prevention and control of injuries; traumatic brain
injury.
TITLE II--CHILDREN'S HEALTH RESEARCH AND PREVENTION ACTIVITIES
Subtitle A--Early Detection, Diagnosis, and Treatment Regarding Hearing Loss
in Infants
Sec. 202. Early detection, diagnosis, and interventions for newborns and
infants with hearing loss.
Subtitle B--Autism
Chapter 1--Surveillance and Research Regarding Prevalence and Pattern of
Autism
Sec. 212. Developmental disabilities surveillance and research
programs.
Sec. 214. Advisory committee.
Sec. 215. Report to Congress.
Sec. 217. Authorization of appropriations.
Chapter 2--Expansion, Intensification, and Coordination of Activities of
Department of Health and Human Services With Respect to Autism
Sec. 218A. Expansion, intensification, and coordination of activities of
National Institutes of Health.
Sec. 219. Developmental disabilities surveillance and research
programs.
Sec. 220. Information and education.
Sec. 220A. Interagency autism coordinating committee.
Sec. 220B. Report to Congress.
Subtitle C--Poison Control Center Enhancement and Awareness
Sec. 223. Establishment of a national toll-free number.
Sec. 224. Establishment of nationwide media campaign.
Sec. 225. Establishment of a grant program.
Subtitle D--Birth Defects Prevention Activities
Chapter 1--Folic Acid Promotion
Sec. 232. Program regarding effects of folic acid in prevention of birth
defects.
Chapter 2--National Center on Birth Defects and Developmental
Disabilities
Sec. 236. National Center on Birth Defects and Developmental
Disabilities.
Subtitle E--Safe Motherhood Monitoring and Prevention Research
Sec. 242. Amendment to Public Health Service Act.
Subtitle F--Pregnant Mothers and Infants Health Promotion
Subtitle G--Utilization of Preventive Health Services
Sec. 261. Grants regarding utilization of preventive health
services.
Subtitle H--Research and Development Regarding Fragile X
Sec. 267. National Institute of Child Health and Human Development;
research on fragile X.
Sec. 268. National Institute of Child Health and Human Development; loan
repayment program regarding research on fragile X.
Subtitle I--Children and Epilepsy
Sec. 271. Programs of the Centers for Disease Control and Prevention;
national public health campaign on epilepsy.
Sec. 272. Programs of Health Resources and Services Administration;
State and local grants for seizure disorder demonstration projects in
medically underserved areas.
Subtitle J--Asthma Treatment Services for Children
Sec. 277. Children's asthma relief.
Sec. 278. Incorporation of asthma prevention treatment and services into
State children's health insurance programs.
Sec. 279. Preventive health and health services block grant; systems for
reducing asthma and asthma-related illnesses through urban cockroach
management.
Sec. 279A. Coordination of Federal activities to address asthma-related
health care needs.
Sec. 279B. Compilation of data by the Centers for Disease Control and
Prevention.
Subtitle K--Juvenile Arthritis and Related Conditions
Sec. 281. Research on juvenile arthritis and related conditions.
Subtitle L--Childhood Skeletal Malignancies
Sec. 286. Programs of Centers for Disease Control and Prevention.
Subtitle M--Reducing Burden of Diabetes Among Children and Youth
Sec. 291. Programs regarding diabetes in children and youth.
Subtitle N--Miscellaneous Provisions
Sec. 296. Report regarding research on rare diseases in children.
TITLE I--REVISION AND EXTENSION OF PROGRAMS
Subtitle A--Pediatric Research Initiative
SEC. 101. SHORT TITLE.
This subtitle may be cited as the `Pediatric Research Initiative Act of
1999'.
SEC. 102. ESTABLISHMENT OF A PEDIATRIC RESEARCH INITIATIVE.
Part A of title IV of the Public Health Service Act (42 U.S.C. 281 et
seq.) is amended by adding at the end the following:
`SEC. 404F. PEDIATRIC RESEARCH INITIATIVE.
`(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 encourage--
`(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 Institute of Child Health and Human Development
and the other Institutes, in considering their requests for new or expanded
pediatric research efforts, and consult with other advisors as the Director
determines 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 2000 through 2003.
`(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. 103. INVESTMENT IN TOMORROW'S PEDIATRIC RESEARCHERS.
Subpart 7 of part C of title IV of the Public Health Service Act (42
U.S.C. 285g et seq.) is amended by adding at the end the following:
`SEC. 452E. INVESTMENT IN TOMORROW'S PEDIATRIC RESEARCHERS.
`(a) IN GENERAL- The Secretary shall make available within the National
Institute of Child Health and Human Development enhanced support for
extramural activities relating to the training and career development of
pediatric researchers.
`(b) PURPOSE- The purpose of support provided under subsection (a) shall
be to ensure the future supply of researchers dedicated to the care and
research needs of children by providing for--
`(1) an increase in the number and size of institutional training grants
to medical school pediatric departments and children's hospitals; and
`(2) an increase in the number of career development awards for
pediatricians building careers in pediatric basic and clinical
research.
`(c) 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 2000 through 2003.'.
Subtitle B--Other Programs
SEC. 111. 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. 112. 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.'.
SEC. 113. PREVENTION AND CONTROL OF INJURIES; TRAUMATIC BRAIN INJURY.
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
2000 through 2003.'.
TITLE II--CHILDREN'S HEALTH RESEARCH AND PREVENTION
ACTIVITIES
Subtitle A--Early Detection, Diagnosis, and Treatment Regarding Hearing
Loss in Infants
SEC. 201. SHORT TITLE.
This subtitle may be cited as the `Newborn and Infant Hearing Screening
and Intervention Act of 1999'.
SEC. 202. EARLY DETECTION, DIAGNOSIS, AND INTERVENTIONS FOR NEWBORNS AND
INFANTS WITH HEARING LOSS.
(a) DEFINITIONS- For the purposes of this subtitle only, the following
terms in this section are defined as follows:
(1) HEARING SCREENING- Newborn and infant hearing screening consists of
objective physiologic procedures to detect possible hearing loss and to
identify newborns and infants who, after rescreening, require further
audiologic and medical evaluations.
(2) AUDIOLOGIC EVALUATION- Audiologic evaluation consists of 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 IDEA Part C coordinating agencies 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.
(3) MEDICAL EVALUATION- Medical evaluation by a physician consists of
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.
(4) MEDICAL INTERVENTION- Medical intervention is 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.
(5) AUDIOLOGIC REHABILITATION- Audiologic rehabilitation (intervention)
consists of procedures, techniques, and technologies to facilitate the
receptive and expressive communication abilities of a child with hearing
loss.
(6) EARLY INTERVENTION- Early intervention (e.g., nonmedical) means
providing appropriate services for the child with hearing loss 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.
(b) PURPOSES- The purposes of this subtitle 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.
(c) STATEWIDE NEWBORN AND INFANT HEARING SCREENING, EVALUATION AND
INTERVENTION PROGRAMS AND SYSTEMS- The Secretary of Health and Human Services
(in this subtitle referred to as 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.
(d) 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.
(e) 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 (c) and to develop a data collection
system under subsection (d).
(f) RULE OF CONSTRUCTION- Nothing in this subtitle shall be construed to
preempt any State law.
(g) AUTHORIZATION OF APPROPRIATIONS-
(1) STATEWIDE NEWBORN AND INFANT HEARING SCREENING, EVALUATION AND
INTERVENTION PROGRAMS AND SYSTEMS- For the purpose of carrying out
subsection (c), 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 2000 through 2003.
(2) TECHNICAL ASSISTANCE, DATA MANAGEMENT, AND APPLIED RESEARCH; CENTERS
FOR DISEASE CONTROL AND PREVENTION- For the purpose of carrying out
subsection (d)(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 2000 through 2003.
(3) TECHNICAL ASSISTANCE, DATA MANAGEMENT, AND APPLIED RESEARCH;
NATIONAL INSTITUTE ON DEAFNESS AND OTHER COMMUNICATION DISORDERS- For the
purpose of carrying out subsection (d)(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 2000
through 2003.
Subtitle B--Autism
CHAPTER 1--SURVEILLANCE AND RESEARCH REGARDING PREVALENCE AND PATTERN OF
AUTISM
SEC. 211. SHORT TITLE.
This chapter may be cited as the `Autism Statistics, Surveillance,
Research, and Epidemiology Act of 1999 (ASSURE)'.
SEC. 212. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH
PROGRAMS.
(a) NATIONAL AUTISM AND PERVASIVE DEVELOPMENTAL DISABILITIES SURVEILLANCE
PROGRAM- The Secretary of Health and Human Services (in this chapter referred
to as 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 disabilities. 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
DISABILITIES 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 disabilities epidemiology for the purpose of
collecting and analyzing information on the number, incidence, correlates,
and causes of autism and related developmental disabilities.
(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 disabilities data according to guidelines prescribed by the
Director, after consultation with relevant State and local public health
officials, private sector developmental disability researchers, and
advocates for those with developmental disabilities;
(B) The center will assist with the development and coordination of
State autism and pervasive developmental disabilities 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 disabilities; 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 disabilities; 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).
SEC. 213. 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 disabilities
surveillance activities through the establishment of a clearinghouse for the
collection and storage of data generated from the monitoring programs
created by this chapter. 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
disabilities.
(2) The Secretary, acting through the Centers for Disease Control and
Prevention, shall coordinate the Federal response to requests for assistance
from State health department officials regarding potential or alleged autism
or developmental disability clusters.
SEC. 214. ADVISORY COMMITTEE.
(a) IN GENERAL- The Secretary shall establish an Advisory Committee for
Autism and Pervasive Developmental Disabilities 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--
(1) the establishment of a national autism and pervasive developmental
disabilities surveillance program;
(2) the establishment of centers of excellence in autism and pervasive
developmental disabilities epidemiology;
(3) methods and procedures to more effectively coordinate government and
non-government programs and research on autism and pervasive developmental
disabilities epidemiology; and
(4) the effective operation of autism and pervasive developmental
disabilities epidemiology research activities.
(1) IN GENERAL- The Committee shall be composed of ex officio members in
accordance with paragraph (2) and 11 appointed members in accordance with
paragraph (3).
(2) EX OFFICIO MEMBERS- The following officials shall serve as ex
officio members of the Committee:
(A) The Director of the National Center for Environmental
Health.
(B) The Assistant Administrator of the Agency for Toxic Substances and
Disease Registry.
(C) The Director of the National Institute of Child Health and Human
Development.
(D) The Director of the National Institute of Neurological Disorders
and Stroke.
(3) APPOINTED MEMBERS- Appointments to the Committee shall be made in
accordance with the following:
(A) Two members shall be research scientists with demonstrated
achievements in research related to autism and related developmental
disabilities. The scientists shall be appointed by the Secretary in
consultation with the National Academy of Sciences.
(B) Five members shall be representatives of the five national
organizations whose primary
emphasis is on research into autism and other pervasive developmental
disabilities. One representative from each of such organizations shall be
appointed by the Secretary in consultation with the National Academy of
Sciences.
(C) Two members shall be clinicians whose practice is primarily
devoted to the treatment of individuals with autism and other pervasive
developmental disabilities. The clinicians shall be appointed by the
Secretary in consultation with the Institute of Medicine and the National
Academy of Sciences.
(D) Two members shall be individuals who are the parents or legal
guardians of a person or persons with autism or other pervasive
developmental disabilities. The individuals shall be appointed by the
Secretary in consultation with the ex officio members under paragraph (1)
and the five national organizations referred to in subparagraph
(B).
(c) ADMINISTRATIVE SUPPORT; TERMS OF SERVICE; OTHER PROVISIONS- The
following apply with respect to the Committee:
(1) The Committee shall receive necessary and appropriate administrative
support from the Department of Health and Human Services.
(2) Members of the Committee shall be appointed for a term of three
years, and may serve for an unlimited number of terms if reappointed.
(3) The Committee shall meet no less than two times per year.
(4) 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.
SEC. 215. REPORT TO CONGRESS.
The Secretary shall prepare and submit to the Congress, after consultation
and comment by the Advisory Committee, 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.
SEC. 216. DEFINITION.
For purposes of this chapter, the term `State' means each of the several
States, the District of Columbia, the Commonwealth of Puerto Rico, American
Samoa, Guam, the Commonwealth of the Northern Mariana Islands, the Virgin
Islands, and the Trust Territory of the Pacific Islands.
SEC. 217. AUTHORIZATION OF APPROPRIATIONS.
For the purpose of carrying out this chapter, there are authorized to be
appropriated such sums as may be necessary for each of the fiscal years 2000
through 2003.
CHAPTER 2--EXPANSION, INTENSIFICATION, AND COORDINATION OF ACTIVITIES OF
DEPARTMENT OF HEALTH AND HUMAN SERVICES WITH RESPECT TO AUTISM
SEC. 218. SHORT TITLE.
This Act may be cited as the `Advancement in Pediatric Autism Research Act
of 1999'.
SEC. 218A. EXPANSION, INTENSIFICATION, AND COORDINATION OF ACTIVITIES OF
NATIONAL INSTITUTES OF HEALTH.
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 acting through the Director of the
National Institute of Mental Health and in collaboration with any other
agencies that the Director determines appropriate.
`(b) 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).
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.
`(c) 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.
`(d) 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.
`(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 2000 through 2003. Such authorizations of appropriations are in
addition to any other authorization of appropriations that is available for
such purpose.'.
SEC. 219. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH
PROGRAMS.
(a) NATIONAL AUTISM AND PERVASIVE DEVELOPMENTAL DISABILITIES SURVEILLANCE
PROGRAM- The Secretary of Health and Human Services (in this chapter referred
to as 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 disabilities. 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
DISABILITIES EPIDEMIOLOGY-
(1) IN GENERAL- The Secretary, acting through the Director of the
Centers for Disease Control and Prevention, shall establish not less than 3,
regional centers of excellence in autism and pervasive developmental
disabilities epidemiology for the purpose of collecting and analyzing
information on the number, incidence, correlates, and causes of autism and
related developmental disabilities.
(2) RECIPIENTS OF AWARDS FOR ESTABLISHMENT OF CENTERS- Centers under
paragraph (1) shall be established and operated through the awarding 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 disabilities data according to guidelines prescribed by the
Director, after consultation with relevant State and local public health
officials, private sector developmental disability researchers, and
advocates for those with developmental disabilities.
(B) The center will assist with the development and coordination of
State autism and pervasive developmental disabilities surveillance efforts
within a region.
(C) The center will identify eligible cases and controls through its
surveillance systems and conduct research into factors which may cause
autism and related developmental disabilities. Each program will develop
or extend an area of special research expertise (including 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 Secretary shall establish a clearinghouse within the Centers for
Disease Control and Prevention for the collection and storage of data
generated from the monitoring programs created by this chapter. Through the
clearinghouse, such Centers shall serve as the coordinating agency for
autism and pervasive developmental disabilities surveillance activities. 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 disabilities.
(2) The Secretary, acting through the Centers for Disease Control and
Prevention, shall coordinate the Federal response to requests for assistance
from State health department officials regarding potential
or alleged autism or developmental disability clusters.
(d) DEFINITION- In this chapter, the term `State' means each of the
several States, the District of Columbia, the Commonwealth of Puerto Rico,
American Samoa, Guam, the Commonwealth of the Northern Mariana Islands, the
Virgin Islands, and the Trust Territory of the Pacific Islands.
(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 2000 through 2003.
SEC. 220. INFORMATION AND EDUCATION.
(a) IN GENERAL- The Secretary 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.
(b) STIPENDS- The Secretary may use amounts made available under this
section to provide stipends for health professionals who are enrolled in
training programs under 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 2000 through 2003.
SEC. 220A. INTERAGENCY AUTISM COORDINATING COMMITTEE.
(a) ESTABLISHMENT- The Secretary shall establish a committee to be known
as the `Autism Coordinating Committee' (in this section referred to 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 and the Centers for Disease Control and
Prevention under this chapter (and the amendment made by this chapter).
(1) IN GENERAL- The Committee shall be composed of the Directors of such
national research institutes, of the Centers for Disease Control and
Prevention, and of such other agencies and such other officials as the
Secretary determines appropriate.
(2) ADDITIONAL MEMBERS- If determined appropriate by the Secretary, the
Secretary may appoint to the Committee--
(A) parents or legal guardians of individuals with autism or other
pervasive developmental disorders; and
(B) representatives of other governmental agencies that serve children
with autism such as the Department of Education.
(c) ADMINISTRATIVE SUPPORT; TERMS OF SERVICE; OTHER PROVISIONS- The
following shall apply with respect to the Committee:
(1) The Committee shall receive necessary and appropriate administrative
support from the Department of Health and Human Services.
(2) Members of the Committee appointed under subsection (b)(2)(A) shall
serve for a term of 3 years, and may serve for an unlimited number of terms
if reappointed.
(3) The Committee shall meet not less than 2 times per year.
SEC. 220B. REPORT TO CONGRESS.
Not later than January 1, 2000, and each January 1 thereafter, the
Secretary shall prepare and submit to the appropriate committees of Congress,
a report concerning the implementation of this chapter and the amendments made
by this chapter.
Subtitle C--Poison Control Center Enhancement and
Awareness
SEC. 221. SHORT TITLE.
This subtitle may be cited as the `Poison Control Center Enhancement and
Awareness Act'.
SEC. 222. DEFINITION.
For purposes of this subtitle, the term `Secretary' means the Secretary of
Health and Human Services.
SEC. 223. ESTABLISHMENT OF A NATIONAL TOLL-FREE NUMBER.
(a) IN GENERAL- The Secretary shall provide coordination and assistance to
regional poison control centers for the establishment of a nationwide
toll-free phone number to be used to access such centers.
(b) RULE OF CONSTRUCTION- Nothing in this section shall be construed as
prohibiting the establishment or continued operation of any privately funded
nationwide toll-free phone number used to provide advice and other assistance
for poisonings or accidental exposures.
(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 2000 through 2003. Funds appropriated under this
subsection shall not be used to fund any toll-free phone number described in
subsection (b).
SEC. 224. ESTABLISHMENT OF NATIONWIDE MEDIA CAMPAIGN.
(a) IN GENERAL- The Secretary shall establish a national media campaign to
educate the public and health care providers about poison prevention and the
availability of poison control resources in local communities and to conduct
advertising campaigns concerning the nationwide toll-free number established
under section 223.
(b) CONTRACT WITH ENTITY- The Secretary may carry out subsection (a) by
entering into contracts with 1 or more nationally recognized media firms for
the development and distribution of monthly television, radio, and newspaper
public service announcements.
(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 2000 through 2003.
SEC. 225. ESTABLISHMENT OF A GRANT PROGRAM.
(a) REGIONAL POISON CONTROL CENTERS- The Secretary shall award grants to
certified regional poison control centers for the purposes of achieving the
financial stability of such centers, and for preventing and providing
treatment recommendations for poisonings.
(b) OTHER IMPROVEMENTS- The Secretary shall also use amounts received
under this section to--
(1) develop standard education programs;
(2) develop standard patient management protocols for commonly
encountered toxic exposures;
(3) improve and expand the poison control data collection systems;
(4) improve national toxic exposure surveillance; and
(5) expand the physician/medical toxicologist supervision of poison
control centers.
(c) CERTIFICATION- Except as provided in subsection (d), the Secretary may
make a grant to a center under subsection (a) only if--
(1) the center has been certified by a professional organization in the
field of poison control, and the Secretary has approved the organization as
having in effect standards for certification that reasonably provide for the
protection of the public health with respect to poisoning; or
(2) the center has been certified by a State government, and the
Secretary has approved the State government as having in effect standards
for certification that reasonably provide for the protection of the public
health with respect to poisoning.
(d) WAIVER OF CERTIFICATION REQUIREMENTS-
(1) IN GENERAL- The Secretary may grant a waiver of the certification
requirement of subsection (c) with respect to a noncertified poison control
center or a newly established center that applies for a grant under this
section if such center can reasonably demonstrate that the center will
obtain such a certification within a reasonable period of time as determined
appropriate by the Secretary.
(2) RENEWAL- The Secretary may only renew a waiver under paragraph (1)
for a period of 3 years.
(e) SUPPLEMENT NOT SUPPLANT- Amounts made available to a poison control
center under this section shall be used to supplement and not supplant other
Federal, State, or local funds provided for such center.
(f) MAINTENANCE OF EFFORT- A poison control center, in utilizing the
proceeds of a grant under this section, shall maintain the expenditures of the
center for activities of the center at a level that is not less than the level
of such expenditures maintained by the center for the fiscal year preceding
the fiscal year for which the grant is received.
(g) MATCHING REQUIREMENT- The Secretary may impose a matching requirement
with respect to amounts provided under a grant under this section if the
Secretary determines appropriate.
(h) 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 2003.
Subtitle D--Birth Defects Prevention Activities
CHAPTER 1--FOLIC ACID
SEC. 231. SHORT TITLE.
This chapter may be cited as the `Folic Acid Promotion and Birth Defects
Prevention Act of 1999'.
SEC. 232. PROGRAM REGARDING EFFECTS OF FOLIC ACID IN PREVENTION OF BIRTH
DEFECTS.
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:
`EFFECTS OF FOLIC ACID IN PREVENTION OF BIRTH DEFECTS
`SEC. 317H. (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 2000 through 2003.'.
CHAPTER 2--NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL
DISABILITIES
SEC. 236. NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL
DISABILITIES.
Title III of the Public Health Service Act (42 U.S.C. 241 et seq.) is
amended--
(A) by redesignating sections 399G through 399J as sections 399M
through 399P, respectively;
(B) in section 399O(b) (as so redesignated), by striking `section
399G(d)' and inserting `section 399M(d)'; and
(C) in section 399P (as so redesignated), by striking `section
399G(d)(1)' and inserting `section 399M(d)(1)'; and
(2) by adding at the end the following part:
`Part P--Pediatric Public Health Promotion
`SEC. 399Q. NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL
DISABILITIES.
`(a) ESTABLISHMENT- 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.
`(b) PURPOSE- The general purpose of the National Center established under
subsection (a) shall be to--
`(1) collect, analyze, and make available data on birth defects,
including data on the causes of such defects and on the incidence and
prevalence of such defects;
`(2) conduct applied epidemiological research on the prevention of such
defects; and
`(3) provide information and education to the public on the prevention
of such defects.
`(c) DIRECTOR- The National Center established under subsection (a) shall
be headed by a director to be appointed by the Secretary.
`(d) TRANSFERS- There shall be transferred to the National Center
established under subsection (a) all activities, budgets and personnel of the
National Center for Environmental Health that relate to birth defects, folic
acid, cerebral palsy, mental retardation, child development, newborn
screening, autism, fragile X syndrome, fetal alcohol syndrome, pediatric
genetics, and disability prevention.
`(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 2000 through 2003.'.
Subtitle E--Safe Motherhood Monitoring and Prevention
Research
SEC. 241. SHORT TITLE.
This subtitle may be cited as the `Safe Motherhood Monitoring and
Prevention Research Act'.
SEC. 242. AMENDMENT TO PUBLIC HEALTH SERVICE ACT.
Title III of the Public Health Service Act, as amended by section 236 of
this Act, is amended by adding at the end the following part:
`Part Q--Safe Motherhood
`SEC. 399R. SAFE MOTHERHOOD MONITORING.
`(a) PURPOSE- It is the purpose of this section 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.
`(b) ACTIVITIES- For the purpose described in subsection (a), the
Secretary may carry out the following activities:
`(1) 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.
`(2) The Secretary may expand the Pregnancy Risk Assessment Monitoring
System to provide surveillance and collect data in each of the 50
States.
`(3) 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.
`(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 2000 through 2003.'.
`SEC. 399S. PREVENTION RESEARCH TO ENSURE SAFE MOTHERHOOD.
`(a) PURPOSE- It is the purpose of this section 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.
`(b) RESEARCH- The Secretary may carry out activities to expand research
relating to--
`(1) encouraging preconception counseling, especially for at risk
populations such as diabetics;
`(2) the identification of critical components of prenatal delivery and
postpartum care;
`(3) the identification of outreach and support services, such as folic
acid education, that are available for pregnant women;
`(4) the identification of women who are at high risk for
complications;
`(5) preventing preterm delivery;
`(6) preventing urinary tract infections;
`(7) preventing unnecessary caesarean sections;
`(8) an examination of the higher rates of maternal mortality among
African American women;
`(9) an examination of the relationship between domestic violence and
maternal complications and mortality;
`(10) preventing smoking, alcohol and illegal drug usage before, during
and after pregnancy;
`(11) preventing infections that cause maternal and infant
complications; and
`(12) other areas determined appropriate by the Secretary.
`(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 2000 through 2003.
`SEC. 399T. PREVENTION PROGRAMS TO ENSURE SAFE MOTHERHOOD.
`(a) IN GENERAL- The Secretary may carry out activities to promote safe
motherhood, including--
`(1) public education campaigns on healthy pregnancies and the building
of partnerships with outside organizations concerned about safe
motherhood;
`(2) education programs for physicians, nurses and other health care
providers; and
`(3) activities to promote community support services for pregnant
women.
`(b) 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 2003.'.
Subtitle F--Pregnant Mothers and Infants Health Promotion
SEC. 251. SHORT TITLE.
This subtitle may be cited as the `Pregnant Mothers and Infants Health
Protection Act'.
SEC. 252. ESTABLISHMENT.
Title III of the Public Health Service Act, as amended by section 242 of
this Act, is amended by adding at the end the following part:
`Part R--Additional Programs
`SEC. 399U. PROGRAMS REGARDING PRENATAL AND POSTNATAL HEALTH.
`(a) IN GENERAL- The Secretary 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 2000 through 2003.'.
Subtitle G--Utilization of Preventive Health Services
SEC. 261. GRANTS REGARDING UTILIZATION OF PREVENTIVE HEALTH SERVICES.
Part D of title III of the Public Health Service Act (42 U.S.C. 254b et
seq.) is amended by adding at the end the following section:
`SEC. 330D. CENTERS FOR STRATEGIES ON FACILITATING UTILIZATION OF PREVENTIVE
HEALTH SERVICES AMONG VARIOUS POPULATIONS.
`(a) IN GENERAL- The Secretary, acting through the appropriate agencies of
the Public Health Service, shall make grants to public or nonprofit private
entities for the establishment and operation of regional centers whose purpose
is to identify particular populations of patients and facilitate the
appropriate utilization of preventive health services by patients in the
populations through developing and disseminating strategies to improve the
methods used by public and private health care programs and providers in
interacting with such patients.
`(b) RESEARCH AND TRAINING- The activities carried out by a center under
subsection (a) may include establishing programs of research and training with
respect to the purpose described in such subsection, including the development
of curricula for training individuals in implementing the strategies developed
under such subsection.
`(c) QUALITY MANAGEMENT- A condition for the receipt of a grant under
subsection (a) is that the applicant involved agree that, in order to ensure
that the strategies developed under such subsection take into account
principles of quality management with respect to consumer satisfaction, the
applicant will make arrangements with one or more private entities that have
experience in applying such principles.
`(d) PRIORITY REGARDING INFANTS AND CHILDREN- In carrying out the purpose
described in subsection (a), the Secretary shall give priority to various
populations of infants, young children, and their mothers.
`(e) EVALUATIONS- The Secretary, acting through the appropriate agencies
of the Public Health Service, shall (directly or through grants or contracts)
provide for the evaluation of strategies under subsection (a) in order to
determine the extent to which the strategies have been effective in
facilitating the appropriate utilization of preventive health services in the
populations with respect to which the strategies were developed.
`(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 2000 through 2003.'.
Subtitle H--Research and Development Regarding Fragile X
SEC. 266. SHORT TITLE.
This subtitle may be cited as the `Fragile X Research Breakthrough Act of
1999'.
SEC. 267. 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, as
amended by section 103 of this Act, is amended by adding at the end the
following section:
`FRAGILE X
`SEC. 452F. (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 2000 through 2003.'.
SEC. 268. 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 2000 through 2003.'.
Subtitle I--Children and Epilepsy
SEC. 271. PROGRAMS OF THE CENTERS FOR DISEASE CONTROL AND PREVENTION;
NATIONAL PUBLIC HEALTH CAMPAIGN ON EPILEPSY.
(a) IN GENERAL- The Secretary of Health and Human Services (in this
subtitle referred to as the `Secretary'), acting through the Director of the
Centers for Disease Control and Prevention, 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.
(b) CERTAIN ACTIVITIES- Activities under subsection (a) shall include--
(1) expanding current surveillance activities through existing
monitoring systems and improving registries that maintain data on
individuals with epilepsy, including children;
(2) enhancing research activities on the management and control of
epilepsy;
(3) 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;
(4) 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;
(5) utilizing and expanding partnerships with organizations with
experience addressing the health and related needs of people with
disabilities; and
(6) other activities the Secretary deems appropriate.
(c) COORDINATION OF ACTIVITIES- The Secretary shall ensure that activities
under this section are coordinated as appropriate with other agencies of the
Public Health Service that carry out activities regarding epilepsy and
seizure.
(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 2000 through 2003.
SEC. 272. PROGRAMS OF HEALTH RESOURCES AND SERVICES ADMINISTRATION; STATE
AND LOCAL GRANTS FOR SEIZURE DISORDER DEMONSTRATION PROJECTS IN MEDICALLY
UNDERSERVED AREAS.
(a) 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.
(b) APPLICATION FOR GRANT- The Secretary may make a grant under subsection
(a) 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 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 2000 through 2003.
SEC. 273. DEFINITIONS.
For purposes of this subtitle:
(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) of the Public Health Service Act.
Subtitle J--Asthma Treatment Services for Children
SEC. 276. SHORT TITLE.
This subtitle may be cited as the `Children's Asthma Relief Act of
1999'.
SEC. 277. CHILDREN'S ASTHMA RELIEF.
Title III of the Public Health Service Act, as amended by section 252 of
this Act, is amended by adding at the end the following:
`Part S--Children's Asthma Relief
`SEC. 399V. ASTHMA TREATMENT GRANTS PROGRAM.
`(a) PURPOSES- The purposes of this section are as follows:
`(1) 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.
`(2) 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 prevent and treat
asthma.
`(3) 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 prevention of asthma.
`(4) 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.
`(b) 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 purposes of this section, including
grants that are designed to develop and expand projects to--
`(A) provide comprehensive asthma services to children, including
access to care and treatment for asthma in a community-based
setting;
`(B) fully equip mobile health care clinics that provide preventive
asthma care including diagnosis, physical examinations, pharmacological
therapy, skin testing, peak flow meter testing, and other asthma-related
health care services;
`(C) conduct study 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; and
`(D) identify eligible children for the medicaid program under title
XIX of the Social Security Act, the State Children's Health Insurance
Program under title XXI of such Act, or other children's health
programs.
`(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 high prevalence of childhood asthma or high
asthma-related mortality (relative to the average asthma incidence 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.
`(c) 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).
`(d) 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.
`(e) APPLICABILITY OF CERTAIN PROVISIONS- The following provisions of
title V of the Social Security Act shall apply to a grant made under this
section to the same extent and in the same manner as such provisions apply to
allotments made under section 502(c) of such Act:
`(1) Section 504(b)(4) (relating to expenditures of funds as a condition
of receipt of Federal funds).
`(2) Section 504(b)(6) (relating to prohibition on payments to excluded
individuals and entities).
`(3) Section 506 (relating to reports and audits, but only to the extent
determined by the Secretary to be appropriate for grants made under this
section).
`(4) Section 508 (relating to nondiscrimination).
`(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 2000 through 2003.'.
SEC. 278. INCORPORATION OF ASTHMA PREVENTION TREATMENT AND SERVICES INTO
STATE CHILDREN'S HEALTH INSURANCE PROGRAMS.
(a) IN GENERAL- The Secretary of Health and Human Services (in this
section referred to as the `Secretary') shall, in accordance with subsection
(b), carry out a program to encourage States to implement plans to carry out
activities to assist children with respect to asthma in accordance with
guidelines of the National Asthma Education and Prevention Program (NAEPP) and
the National Heart, Lung and Blood Institute.
(b) RELATION TO CHILDREN'S HEALTH INSURANCE PROGRAM-
(1) IN GENERAL- Subject to paragraph (2), if a State child health plan
under title XXI of the Social Security Act (42 U.S.C. 1397aa et seq.)
provides for activities described in subsection (a) to an extent
satisfactory to the Secretary, the Secretary shall, with amounts
appropriated under subsection
(c), make a grant to the State involved to assist the State in carrying out
such activities.
(2) CRITERIA REGARDING ELIGIBILITY FOR GRANT; RULE OF CONSTRUCTION
REGARDING AUTHORITY OF SECRETARY- The Secretary shall publish in the Federal
Register criteria describing the circumstances in which the Secretary will
consider a State plan to be satisfactory for purposes of paragraph (1),
subject to the condition that this section may not be construed as modifying
(or authorizing the Secretary to modify) any requirement or authority
established in or under title XXI of the Social Security Act.
(3) REQUIREMENT OF MATCHING FUNDS-
(A) IN GENERAL- With respect to the costs of the activities to be
carried out by a State pursuant to paragraph (1), the Secretary may make a
grant under such paragraph only if the State agrees 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 15 percent of the costs.
(B) DETERMINATION OF AMOUNT CONTRIBUTED- Non-Federal contributions
required in subparagraph (A) may be in cash or in kind, fairly evaluated,
including 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 non-Federal contributions.
(4) TECHNICAL ASSISTANCE- With respect to State child health plans under
title XXI of the Social Security Act (42 U.S.C. 1397aa et seq.), the
Secretary, acting through the Director of the Centers for Disease Control
and Prevention, in consultation with the heads of other Federal agencies
involved in asthma treatment and prevention, shall make available to the
States technical assistance in developing the provision of such plans that
will provide for activities pursuant to paragraph (1).
(c) 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 2000 through 2003.
SEC. 279. PREVENTIVE HEALTH AND HEALTH SERVICES BLOCK GRANT; SYSTEMS FOR
REDUCING ASTHMA AND 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 structural rehabilitation of housing, public schools,
and other public facilities to reduce cockroach infestation, 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)'.
SEC. 279A. COORDINATION OF FEDERAL ACTIVITIES TO ADDRESS ASTHMA-RELATED
HEALTH CARE NEEDS.
(a) IN GENERAL- The Director of the National Heart, Lung, and Blood
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 enactment of this Act,
submit recommendations to 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 2000 through 2003.
SEC. 279B. COMPILATION OF DATA BY THE CENTERS FOR DISEASE CONTROL AND
PREVENTION.
(a) IN GENERAL- The Director of the Centers for Disease Control and
Prevention, in consultation with the National Asthma Education Prevention
Program Coordinating Committee, shall--
(1) conduct local asthma surveillance activities to collect data on the
prevalence and severity of
asthma and the quality of asthma management, including--
(A) telephone surveys to collect sample household data on the local
burden of asthma; and
(B) health care facility specific surveillance to collect asthma data
on the prevalence and severity of asthma, and on the quality of asthma
care; and
(2) compile and annually publish data on--
(A) the prevalence of children suffering from asthma in each State;
and
(B) the childhood mortality rate associated with asthma nationally and
in each State.
(b) COLLABORATIVE EFFORTS- The activities described in subsection (a)(1)
may be conducted in collaboration with eligible entities awarded a grant under
section 399V of the Public Health Service Act (as added by section 277 of this
Act).
Subtitle K--Juvenile Arthritis and Related Conditions
SEC. 281. RESEARCH ON JUVENILE ARTHRITIS AND RELATED CONDITIONS.
(a) ESTABLISHMENT- The Directors of the National Institute of Arthritis
and Musculoskeletal and Skin Diseases and 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) INFORMATION RESOURCE CENTER-
(1) IN GENERAL- In order to assist in carrying out the purpose described
in subsection (a), the Director of the National Institutes of Health shall
provide for the establishment of an information resource center on arthritis
and related conditions, including juvenile arthritis, to facilitate and
enhance knowledge and understanding on the part of patients, health
professionals, and the public through the effective dissemination of
information.
(2) ESTABLISHMENT THROUGH GRANT OR CONTRACT- For the purpose of carrying
out paragraph (1), the Director of the National Institutes of Health shall
enter into a grant, cooperative agreement, or contract with a national,
nonprofit private entity involved in activities regarding the prevention and
control of arthritis and related conditions through the National Arthritis
Action Plan.
(c) PEDIATRIC RHEUMATOLOGY- The Secretary of Health and Human Services,
acting through the Director of the National Institutes of Health and the
Administrator of the Health Resources and Services Administration, shall
develop a coordinated effort to 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 2000 through 2003.
Subtitle L--Childhood Skeletal Malignancies
SEC. 286. PROGRAMS OF CENTERS FOR DISEASE CONTROL AND PREVENTION.
(a) IN GENERAL- The Secretary of Health and Human Services (in this
section referred to as the `Secretary'), acting through the Director of the
Centers for Disease Control and Prevention, 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 revise the definition of such term as determined necessary
to carry out the intent of this effort.
(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 2000 through 2003.
Subtitle M--Reducing Burden of Diabetes Among Children and
Youth
SEC. 291. PROGRAMS REGARDING DIABETES IN CHILDREN AND YOUTH.
(a) NATIONAL REGISTRY ON JUVENILE DIABETES- The Secretary of Health and
Human Services (in this section referred to as 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) LONG-TERM EPIDEMIOLOGY STUDIES ON JUVENILE DIABETES-
(1) IN GENERAL- The Secretary, acting through the Director of the
National Institutes of Health, 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.
(c) TYPE 2 DIABETES IN YOUTH- The Secretary, acting through the Director
of the Centers for Disease Control and Prevention, 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; and
(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.
(d) 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.
(e) 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.
(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 2000 through 2003.
Subtitle N--Miscellaneous Provisions
SEC. 296. 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 1999, 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 2000
through 2003.
END