[Congressional Bills 103th Congress]
[From the U.S. Government Publishing Office]
[H.R. 4789 Introduced in House (IH)]

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 
disorders, 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 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.''.
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