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Re: Udall Bill
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104th Congress H. R. 1462 As Introduced in the House
Note: This document is the unofficial version of a Bill or
Resolution.
The printed Bill and Resolution produced by the Government
Printing
Office is the only official version.
VERSION As Introduced in the House
CONGRESS 104th CONGRESS
1st Session
BILL H. R. 1462
TITLE To amend the Public Health Service Act to provide for
programs of
research regarding Parkinson`s disease, and for
other purposes.
--------------------
IN THE HOUSE OF REPRESENTATIVES
APRIL 6, 1995
Mr. Waxman (for himself, Mr. Upton, Mr. Dingell, Mr.
Abercrombie,
Mr. Andrews, Mr. Coyne, Mr. Deutsch, Mr. Dixon, Mr.
Frank of
Massachusetts, Mr. Greenwood, Mr. Kleczka, Mrs.
Lowey, Mr.
Markey, Mr. McDermott, Mr. Miller of California,
Mrs. Mink of
Hawaii, Mrs. Morella, Mr. Oberstar, Mr. Pallone,
Mr. Pastor,
Mr. Sisisky, Mr. Studds, Mr. Towns, and Ms.
Woolsey) introduced
the following bill; which was referred to the
Committee on
Commerce
--------------------
TEXT A BILL
To amend the Public Health Service Act to provide for
programs of
research regarding Parkinson`s disease, and for
other purposes.
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 `Morris K. Udall
Parkinson`s
Research, Assistance, and Education Act of 1995`.
SEC. 2. FINDINGS AND PURPOSE.
(a) Findings . - Congress finds the following:
(1) Parkinson`s disease and related disorders
(hereafter
referred to in this Act as `Parkinson`s`) is a
neurological
disorder affecting as many as 1,500,000 Americans.
(2) Approximately 40 percent of persons with
Parkinson`s are
under the age of 60.
(3) While science has yet to determine what
causes the
disease, research has found that cells that produce
a
neurochemical called dopamine inexplicably
degenerate, causing
uncontrollable tremors, muscle stiffness, and loss
of motor
function.
(4) Eventually, Parkinson`s renders the afflicted
individuals
incapable of caring for themselves. In addition to
causing
disability and suffering for the afflicted
individuals,
Parkinson`s places tremendous and prolonged
physical,
emotional, and financial strain on family and loved
ones.
(5) It is estimated that the disease costs
society nearly
$6,000,000,000 annually.
(6) To date, the federally funded research effort
has been
grossly underfunded. Only $26,000,000 is allocated
specifically for research on Parkinson`s, or only
about one
dollar for every $200 in annual societal costs.
(7) In order to take full advantage of the
tremendous
potential for finding a cure or effective
treatment, the
Federal investment in Parkinson`s must be expanded,
as well as
the coordination strengthened among the National
Institutes of
Health research institutes.
(b) Purpose . - It is the purpose of this Act to
provide for the
expansion and coordination of research concerning
Parkinson`s, and
to improve care and assistance for afflicted
individuals and their
family caregivers.
SEC. 3. BIOMEDICAL RESEARCH ON PARKINSON`S DISEASE.
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:
`PARKINSON`S DISEASE
`Sec. 409B. (a) In General . - The Director of NIH
shall
establish a program for the conduct and support of
research and
training, the dissemination of health information, and
other
programs with respect to Parkinson`s disease.
`(b) Interagency Coordinating Committee . -
`(1) In general. - The Director of NIH shall
establish a
committee to be known as the Interagency
Coordinating Committee
on Parkinson`s Disease (in this subsection referred
to as the
`Coordinating Committee`).
`(2) Duties. - With respect to Parkinson`s, the
Coordinating
Committee shall -
`(A) provide for the coordination of the
activities of
the national research institutes; and
`(B) coordinate the aspects of all Federal
health
programs and activities relating to Parkinson`s
in order to
assure the adequacy, effectiveness, and
technical soundness
of such programs and activities and in order to
provide for
the full communication and exchange of
information
necessary to maintain adequate coordination of
such
programs and activities.
`(3) Composition. - The Coordinating Committee
shall be
composed of -
`(A) the directors of each of the national
research
institutes and other agencies involved in
research with
respect to Parkinson`s;
`(B) one representative of the relevant
Federal
departments and agencies whose programs involve
health
functions or responsibilities relevant to such
disease;
`(C) individuals with the disease and
individuals who
have a family history with the disease; and
`(D) health professionals or allied health
professionals.
`(4) Chair. - The Coordinating Committee shall be
chaired by
the Director of NIH (or the designee of the
Director). The
Committee shall meet at the call of the chair, but
not less
often than once each year.
`(5) Annual report. - Not later than 120 days
after the end
of each fiscal year, the Coordinating Committee
shall prepare
and submit to the Secretary, the Director of NIH,
and the
directors specified in paragraph (3)(A) a report
detailing the
activities of the Committee in such fiscal year in
carrying out
paragraph (2).
`(c) Morris K. Udall Research Centers. -
`(1) In general. - The Director of NIH shall
award Core
Center Grants to encourage the development of
innovative
multidisciplinary research and provide training
concerning
Parkinson`s. The Director shall award not more than
10 Core
Center
Grants and designate each center funded under such
grants as a
Morris K. Udall Center for Research on Parkinson`s
Disease.
`(2) Requirements. -
`(A) In general . - With respect to
Parkinson`s, each
center assisted under this subsection shall -
`(i) use the facilities of a single
institution or a
consortium of cooperating institutions, and
meet such
qualifications as may be prescribed by the
Director of
the NIH; and
`(ii) conduct basic and clinical research
and provide
patient care services.
`(B) Discretionary requirements . - With
respect to
Parkinson`s, each center assisted under this subsection
may -
`(i) conduct training programs for
scientists and
health professionals;
`(ii) conduct programs to provide
information and
continuing education to health
professionals;
`(iii) conduct programs for the
dissemination of
information to the public; and
`(iv) develop and maintain, where
appropriate, a
brain bank to collect specimens related to
the research
and treatment of Parkinson`s.
`(3) Stipends regarding training programs. - A
center may use
funds provided under paragraph (1) to provide
stipends for
scientists and health professionals enrolled in
training
programs under paragraph (2)(C).
`(4) Duration of support. - Support of a center
under this
subsection may be for a period not exceeding five
years. Such
period may be extended by the Director of NIH for
one or more
additional periods of not more than five years if
the
operations of such center have been reviewed by an
appropriate
technical and scientific peer review group
established by the
Director and if such group has recommended to the
Director that
such period should be extended.
`(d) Data System; Information Clearinghouse. -
`(1) Data system. - The Director of NIH shall
establish the
National Parkinson`s Disease Data System for the
collection,
storage, analysis, retrieval, and dissemination of
data derived
from patient populations with such disease,
including, where
possible, data involving general populations for
the purpose of
detection of individuals with a risk of developing
the disease.
`(2) Information clearinghouse. - The Director of
NIH shall
establish the National Parkinson`s Disease
Information
Clearinghouse to facilitate and enhance knowledge
and
understanding of such disease on the part of health
professionals, patients, and the public through the
effective
dissemination of information.
`(e) Morris K. Udall Leadership and Excellence Awards
. - The
Director of NIH shall establish a grant program to
support
scientists who have distinguished themselves in the
field of
Parkinson`s research. Grants under this subsection
shall be
utilized to enable established investigators to devote
greater time
and resources in laboratories to conduct research on
Parkinson`s
and to encourage the development of a new generation of
investigators, with the support and guidance of the
most productive
and innovative senior researchers.
`(f) National Parkinson`s Disease Education Program
. - The
Director of NIH shall establish a national education
program that
is designed to foster a national focus on Parkinson`s
and the care
of those with Parkinson`s. Activities under such
program shall
include -
`(1) the bringing together of public and private
organizations to develop better ways to provide
care to
individuals with Parkinson`s, and assist the
families of such
individuals; and
`(2) the provision of technical assistance to
public and
private organizations that offer support and aid to
individuals
with Parkinson`s and their families.
`(g) Authorization of Appropriations . -
`(1) In general . - For the purpose of carrying
out this
section, there are authorized to be appropriated
$100,000,000 for
fiscal year 1996, and such sums as may be necessary for
each of the
fiscal years 1997 through 2000.
`(2) Availability . - Of the amount appropriated
under
paragraph (1), the Secretary shall make available not
to exceed
$10,000,000 for fiscal year 1996, and such sums as may
be necessary
for each of the fiscal years 1997 through 2000, to
establish Morris
K. Udall Centers under subsection (c).`.
.
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Jeffrey S. Kaye jskaye@xxxxxxx
Eugene, Oregon, USA
Check out the Parkinson's Disease Information Center at...
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