[Congressional Bills 104th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1462 Introduced in House (IH)]







104th CONGRESS
  1st Session
                                H. R. 1462

   To amend the Public Health Service Act to provide for programs of 
    research regarding Parkinson's disease, and for other purposes.


_______________________________________________________________________


                    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

_______________________________________________________________________

                                 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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