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.`.
.
