FOR IMMEDIATE RELEASE
Children's Health Act of 2000 Passes House and Senate
Awaiting Signature by President Clinton to Become Law
FOR IMMEDIATE RELEASE -- 9/27
CHILDREN'S HEALTH BILL PASSES SENATE AND HOUSE: FRAGILE X RESEARCH TO BE
EXPANDED, INTENSIFIED AND COORDINATED BY THE NICHD
Today the U.S. Senate (9/22) and House of Representatives (9/27) passed the
Children's Health Act of 2000, which provides research and other funding for diseases and
conditions afflicting millions of children. One provision of this bill directs the
National Institute of Child Health and Human Development (NICHD) to "expand,
intensify, and coordinate the activities of the Institute with respect to research on ...
fragile X", the most common cause of inherited mental retardation. In
addition, it requires the Director of the Institute to "make grants ... for the
development and operation of [at least 3] centers
to conduct research for ... improving the diagnosis and treatment of, and finding the cure
for, fragile X"
In a separate section dealing with pediatric research, including Fragile X research,
the Secretary of Health, Education and Welfare is required to enter into agreements with
"qualified health professionals who agree to
conduct pediatric research in consideration of the Federal government agreeing to repay,
for each year of such service, not more than $35, 000 of the principal and interest of the
educational loans of such professionals".
Katie Clapp, President of FRAXA Research Foundation and Jeffrey Cohen, President
of the National Fragile X Foundation, both Fragile X parents, each extolled the
passage of this legislation. Clapp said, "We appreciate, more than we can say,
the sponsorship, leadership, and hard work of Senators Bill Frist R.TN) and Edward Kennedy
(D.MA) and their staffs---along with so many others. They listened to the thousands
of Fragile X parents, families, and friends throughout the United States. We appreciate,
as well, the bipartisan statesmanship and help of Senators Chuck Hagel (R.NE) and John
Edwards D.NC) that tells us in the Fragile X community that when children's health is
concerned, the system does indeed work for the children, our nation's most precious
resource."
Cohen said, "We have every confidence that the House of Representatives, which passed
its version of this legislation on May 9 by 419 to 2 will now pass the agreed version and
send it to the President for signature into law this year. This is just the
beginning. Fragile X is finally being recognized. It affects up to 900,000
Americans. One of every 267 women is a carrier. This single gene deficiency
must be cured -- and it will be. Also, Fragile X research benefits research into many
other genetic
diseases."
TEXT FOLLOWS:
*******************************************************
TITLE II-RESEARCH AND DEVELOPMENT REGARDING FRAGILE X SEC. 201. 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
[Page S9051]
"(b) RESEARCH CENTERS.-
"(1) IN GENERAL.-The Director of the
Institute shall make grants or enter into contracts 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.-
"(A) IN
GENERAL.-In carrying out paragraph (1), the Director of the Institute shall, to the extent
that amounts are appropriated, and subject to subparagraph (B), provide for the
establishment of at least three
fragile X research centers.
"(B) PEER
REVIEW REQUIREMENT.-The Director of the Institute shall make a grant to, or enter into a
contract with, an entity for purposes of establishing a center under paragraph (1) only if
the grant or contract has been recommended after technical and scientific peer review
required by regulations under section 492.
"(3) ACTIVITIES.-The Director of the
Institute, with the assistance of centers established under paragraph (1), shall conduct
and support basic and biomedical research into the detection and treatment of fragile X.
"(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.".
TITLE X-PEDIATRIC RESEARCH INITIATIVE
SEC. 1001. ESTABLISHMENT OF PEDIATRIC RESEARCH INITIATIVE.
Part B of title IV of the Public Health Service Act, as amended
by section 101 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´) to conduct and support research that is directly
related to diseases, disorders, and other conditionsin children. 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-
"(1) to increase support for
pediatric biomedical research within the National Institutes of Health to realize the
expanding opportunities for advancement in scientific investigations and care for
children;
"(2) to enhance collaborative
efforts among the Institutes to conduct and support multidisciplinary research in the
areas that the Director deems most promising; and
"(3) in coordination with the Food
and Drug Administration, to increase 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 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 assistance is directly related to the
illnesses and conditions of children; 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 funds obligated to conduct or support pediatric
research
across the National Institutes of Health, 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 $50,000,000 for fiscal year 2001, and
such sums as may be necessary for each of the fiscal years 2002 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. 1002. INVESTMENT IN TOMORROW´S PEDIATRIC RESEARCHERS.
(a) IN GENERAL.-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) ENHANCED SUPPORT.-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 institutions supporting pediatric training; and
"(2) an increase in the number of
career development awards for health professionals who intend to build careers in
pediatric basic and clinical research.
"(b) AUTHORIZATION.-For the purpose of carrying out
subsection (a), there are authorized to be appropriated such sums as may be necessary for
each of the fiscal years 2001 through 2005.".
(b) PEDIATRIC RESEARCH LOAN REPAYMENT PROGRAM.-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:
"PEDIATRIC RESEARCH LOAN REPAYMENT PROGRAM
"SEC. 487F. (a) IN GENERAL.-The Secretary, in consultation
with the Director of NIH, may establish a pediatric research loan repayment program.
Through such program-
"(1) the Secretary shall enter into
contracts with qualified health professionals under which such professionals will agree to
conduct pediatric research, in consideration of the Federal government agreeing to
repay, for each year of such service, not more than $35,000 of the principal and interest
of the educational loans of such professionals; and [Page S9056]
"(2) the Secretary shall, for the
purpose of providing reimbursements for tax liability resulting from payments made under
paragraph (1) on behalf of an individual, make payments, in addition to payments under
such paragraph, to the individual in an amount equal to 39 percent of the total amount of
loan repayments made for the taxable year involved.
"(b) APPLICATION OF OTHER PROVISIONS.-The provisions of
sections 338B, 338C, and 338E shall, except as inconsistent with paragraph (1), apply to
the program established under such paragraph to the same extent and in the same manner as
such provisions apply to the National Health Service Corps Loan Repayment Program
established under subpart III of part D of title III.
"(c) FUNDING.-
"(1) IN GENERAL.-For the purpose of
carrying out this section with respect to a national research institute, the Secretary may
reserve, from amounts appropriated for such institute for the fiscal year involved, such
amounts as the Secretary determines to be appropriate.
"(2) AVAILABILITY OF FUNDS.-Amounts
made available to carry out this section shall remain available until the expiration of
the second fiscal year beginning after the fiscal year for which such amounts were made
available.".
For More Information Contact:
FRAGILE X ASSOCIATION OF SOUTHERN CALIFORNIA
P.O. BOX 6924, BURBANK, CA 91510-6924
Tel: 818-754-4227
FAX: 310 276-9251
Internet: Info@fraxsocal.org
