Text of Udall bill

[Andrew McKeen <amckeen@xxxxxxxxx>]

Hi,

  I found this on-line and thought it would be of interest to the
list.  It is the text of the Udall bill as it was introduced to
congress last year.  I have not been able to find out the current
status, but would be interested in finding out more information (is it
in committee? when is it going to be voted on?).

 -Andy


103d CONGRESS S. 2294  As Introduced in the Senate

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 Senate
CONGRESS  103d CONGRESS
           2d Session
BILL                                    S. 2294
TITLE     To amend the Public Health Service Act to provide for the expansion
              and coordination of research concerning Parkinson`s disease and
              related disorders, and to improve care and assistance for its
              victims and their family caregivers, and for other purposes.
                                  --------------------
                           IN THE SENATE OF THE UNITED STATES
                        JULY 19 (LEGISLATIVE DAY, JULY 11), 1994
          Mr. Hatfield (for himself, Mr. Simpson, and Mr. Wellstone)
              introduced the following bill; which was read twice and
              referred to the Committee on Labor and Human Resources
                                  --------------------
TEXT                                     A BILL
          To amend the Public Health Service Act to provide for the expansion
              and coordination of research concerning Parkinson`s disease and
              related disorders, and to improve care and assistance for its
              victims and their family caregivers, 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, Education, and Assistance Act of 1994`.
          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 its victims incapable of
              caring for themselves.  In addition to causing disability and
              suffering for its victims, 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 $30,000,000 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 its victims and their family
          caregivers.
          SEC. 3. BIOMEDICAL RESEARCH ON PARKINSON`S DISEASE.
            Part E of title IV of the Public Health Service Act (42 U.S.C.
          287 et seq.) is amended by adding at the end thereof the following
          new subpart:
                       `SUBPART 4 - PARKINSON`S DISEASE RESEARCH
          `SEC. 485G. PARKINSON`S DISEASE RESEARCH.
            `(a) Expansion of Biomedical Research  . -
                `(1) Coordination council  . - The Director of the National
          Institutes of Health shall establish a council to coordinate
          Parkinson`s research activities.  Members of the council shall
          include the Director of the National Institutes of Health, the
          Director of the National Institute of Neurological Disorders and
          Stroke, the Director of the National Institute on Aging, the
          Director of the National Institute of Environmental Health
          Sciences, patient advocates, and representatives of other
          departments and agencies conducting or supporting research on
          Parkinson`s.
                `(2) National consensus conference  . - The council
          established under paragraph (1) shall convene a National Consensus
          Conference on Parkinson`s Disease and Related Neuro-degenerative
          Disorders to aid in the development of a broad-based strategy for
          identifying the cause of and treating such disorders.
                `(3) Research agenda  . - Not later than 180 days after the
          date of enactment of this section, and annually thereafter, the
          Secretary, in consultation with the council established under
          paragraph (1), shall develop and submit to the Energy and Commerce
          Committee and the Appropriations Committee of the House of
          Representatives and the Labor and Human Resources Committee and the
          Appropriations Committee of the Senate, a coordinated research
          agenda.
                `(4) Research centers  . - The Secretary shall provide for
          the establishment of 10 Parkinson`s Research Centers. Such centers
          shall -
                    `(A) conduct research into the cause, prevention,
                  treatment, and management of Parkinson`s;
                    `(B) disseminate clinical information concerning
                  Parkinson`s and provide patient care services;
                    `(C) provide training for health care personnel
                  concerning Parkinson`s;
                    `(D) coordinate research with other such Centers and
                  related public and private research institutions;
                    `(E) develop and maintain, where appropriate, a tissue
                  bank to collect specimens related to the research and
                  treatment of Parkinson`s; and
                    `(F) enhance community awareness concerning Parkinson`s
                  and promote the involvement of advocate groups.
            `(b) Morris K. Udall Feasibility Study Grants  . - The Secretary
          may award feasibility study grants under this section to support
          the development of preliminary data sufficient to provide the basis

          for the submission of applications for independent research support
          grants or establishment of a Center under this section.
            `(c) Morris K. Udall Leadership and Excellence Awards  . - The
          Secretary 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.
            `(d) Patient and Family Registries  . - The Secretary shall
          establish a registry for screening and collecting patient and
          family data that may be useful in determining incidence and
          possible risk factors concerning Parkinson`s.
            `(e) Morris K. Udall Health Professions Training Grants  . - The
          Secretary may award grants to schools of medicine, nursing, social
          work, and health services administration, and other appropriate
          institutions, for the provision of training and continuing
          education concerning health and long-term care of individuals with
          Parkinson`s. In awarding grants under this subsection the Secretary
          shall ensure appropriate geographic coverage.
            `(f) National Parkinson`s Disease Education Program  . - The
          Secretary 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;
                `(2) the provision of technical assistance to public and
              private organizations that offer support and aid to families
              caring for individuals with Parkinson`s; and
                `(3) the establishment of a clearinghouse that will
              disseminate the most up-to-date research, treatment, and
              training information to families, health professionals, and the
              general public concerning Parkinson`s.
            `(g) Application  . - To be eligible to receive a grant or other
          assistance under this section, an individual or entity shall
          prepare and submit to the Secretary an application at such time, in
          such manner, and containing such information as the Secretary may
          require.
            `(h) Authorization of Appropriations  . -
                `(1) In general  . - For carrying out the activities
          described in this section, there are authorized to be appropriated
          $75,000,000 for fiscal year 1996, $100,000,000 for fiscal year
          1997, $200,000,000 for fiscal year 1998, and such sums as may be
          necessary for each of the fiscal years 1999 and 2000. Of amounts so
          appropriated, the Secretary shall make available -
                    `(A) $10,000,000 for fiscal year 1996, $20,000,000 for
                  fiscal year 1997, $30,000,000 for fiscal year 1998, and
                  such sums as may be necessary for each of the fiscal years
                  1999 and 2000, for establishing centers under subsection
                  (a)(4); and
                    `(B) $2,000,000 for fiscal year 1996, $4,000,000 for
                  fiscal year 1997, $6,000,000 for fiscal year 1998, and such
                  sums as may be necessary for each of the fiscal years 1999
                  and 2000 for carrying out feasibility study grants under
                  subsection (b).
                `(2) Leadership and excellence awards  . - For carrying out
          activities under subsection (c), there are authorized to be
          appropriated $10,000,000 for fiscal year 1996, $15,000,000 for
          fiscal year 1997, $20,000,000 for fiscal year 1998, and such sums
          as may be necessary for each of the fiscal years 1999 and 2000.
                `(3) Patient and family registries  . - For carrying out
          activities under subsection (d), there are authorized to be
          appropriated $2,000,000 for each of fiscal years 1996, 1997, and
          1998, and such sums as may be necessary for each of the fiscal
          years 1999 and 2000.
                `(4) Health professions training programs  . - For carrying
          out activities under subsection (e), there are authorized to be
          appropriated $2,000,000 for fiscal year 1996, $5,000,000 for fiscal
          year 1997, $8,000,000 for fiscal year 1998, and such sums as may be
          necessary for each of the fiscal years 1999 and 2000.
                `(5) National Parkinson`s Disease Education Program  . - For
          carrying out activities under subsection (f), there are authorized
          to be appropriated $2,000,000 for fiscal year 1996, $3,000,000 for
          fiscal year 1997, $4,000,000 for fiscal year 1998, and such sums as
          may be necessary for each of the fiscal years 1999 and 2000.`.
.