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104th Congress H. R. 1462  As Introduced in the House
 
 
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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.
 
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                            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
 
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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                                   [log in to unmask]
Eugene, Oregon, USA                   http://www.efn.org/~jskaye
 
  Check out the Parkinson's Disease Information Center at...
          http://www.efn.org/~jskaye/pd/index.html
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