I
103D CONGRESS
2D SESSION
H. R. 4789
To amend the Public Health Service Act to provide for the expansion and
coordination of research concerning Parkinson’s disease and related dis-
orders, and to improve care and assistance for its victims and their
family caregivers, and for other purposes.
IN THE HOUSE OF REPRESENTATIVES
JULY 19, 1994
Mr. WAXMAN (for himself, Mr. UPTON, and Mr. RICHARDSON) introduced the
following bill; which was referred to the Committee on Energy and Commerce
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 Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘‘Morris K. Udall Par-
kinson’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 trem-
ors, 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, Par-
kinson’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 soci-
etal costs.
(7) In order to take full advantage of the tre-
mendous 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 pro-
vide for the expansion and coordination of research con-
cerning 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 activi-
ties. Members of the council shall include the Direc-
tor 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 En-
vironmental 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 Par-
kinson’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 Com-
merce Committee and the Appropriations Committee
of the House of Representatives and the Labor and
Human Resources Committee and the Appropria-
tions Committee of the Senate, a coordinated re-
search agenda.
‘‘(4) RESEARCH CENTERS.—The Secretary shall
provide for the establishment of 10 Parkinson’s Re-
search Centers. Such centers shall—
‘‘(A) conduct research into the cause, pre-
vention, treatment, and management of Parkin-
son’s;
‘‘(B) disseminate clinical information con-
cerning Parkinson’s and provide patient care
services;
‘‘(C) provide training for health care per-
sonnel concerning Parkinson’s;
‘‘(D) coordinate research with other such
Centers and related public and private research
institutions;
‘‘(E) develop and maintain, where appro-
priate, a tissue bank to collect specimens relat-
ed to the research and treatment of Parkin-
son’s; and
‘‘(F) enhance community awareness con-
cerning Parkinson’s and promote the involve-
ment 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 sup-
port grants or establishment of a Center under this sec-
tion.
‘‘(c) MORRIS K. UDALL LEADERSHIP AND EXCEL-
LENCE 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 lab-
oratories to conduct research on Parkinson’s and to en-
courage the development of a new generation of investiga-
tors, with the support and guidance of the most productive
and innovative senior researchers.
‘‘(d) PATIENT AND FAMILY REGISTRIES.—The Sec-
retary shall establish a registry for screening and collect-
ing patient and family data that may be useful in deter-
mining incidence and possible risk factors concerning Par-
kinson’s.
‘‘(e) MORRIS K. UDALL HEALTH PROFESSIONS
TRAINING GRANTS.—The Secretary may award grants to
schools of medicine, nursing, social work, and health serv-
ices administration, and other appropriate institutions, for
the provision of training and continuing education con-
cerning health and long-term care of individuals with Par-
kinson’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 edu-
cation 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 fami-
lies 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 Par-
kinson’s; and
‘‘(3) the establishment of a clearinghouse that
will disseminate the most up-to-date research, treat-
ment, and training information to families, health
professionals, and the general public concerning Par-
kinson’s.
‘‘(g) APPLICATION.—To be eligible to receive a grant
or other assistance under this section, an individual or en-
tity shall prepare and submit to the Secretary an applica-
tion 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 activi-
ties 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 nec-
essary 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 nec-
essary 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 sub-
section (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.