[Congressional Bills 103th Congress]
[From the U.S. Government Publishing Office]
[S. 1595 Introduced in Senate (IS)]

103d CONGRESS
  1st Session
                                S. 1595

 To amend the Public Health Service Act to revise and extend the bone 
             marrow donor program, and for other purposes.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

             October 27 (legislative day, October 13), 1993

 Mr. Kennedy (for himself and Mrs. Kassebaum) introduced the following 
 bill; which was read twice and referred to the Committee on Labor and 
                            Human Resources

_______________________________________________________________________

                                 A BILL


 
 To amend the Public Health Service Act to revise and extend the bone 
             marrow donor program, 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 ``Bone Marrow Donor Program 
Reauthorization Act of 1993''.

SEC. 2. REAUTHORIZATION.

    Section 379 of the Public Health Service Act (42 U.S.C. 274k) is 
amended--
            (1) in subsection (a), by adding at the end thereof the 
        following: ``With respect to the board of directors--
            ``(1) each member of the board shall serve for a term of 5 
        years, except that the terms of each member who is serving on 
        the date of enactment of the Organ Transplant Program 
        Reauthorization Act of 1993 shall expire at times determined by 
        the Secretary, in consultation with the board;
            ``(2) a member of the board may continue to serve after the 
        expiration of the term of such member until a successor is 
        appointed; and
            ``(3) to ensure the continuity of the board, not more than 
        one-fifth of the board shall be composed of newly appointed 
        members each year.'';
            (2) in subsection (b)--
                    (A) in paragraph (2), by striking ``establish'' and 
                all that follows through ``directly assists'' and 
                inserting ``cooperate with the patient advocacy and 
                case management office established under subsection (j) 
                and make available information on (A) the resources 
                available through the National Bone Marrow Donor 
                Program, (B) the comparative costs incurred by patients 
                prior to transplant, and (C) the marrow donor 
                registries that meet the standards described in 
                subsection (c)(3) and (d)(1), to assist'';
                    (B) in paragraph (5), to read as follows:
            ``(5) establish a program for the recruitment of bone 
        marrow donors that includes the compilation and distribution of 
        informational materials and processes to educate and update 
        potential donors;'';
                    (C) by redesignating paragraphs (6) and (7) as 
                paragraphs (7) and (8), respectively; and
                    (D) by inserting after paragraph (5), the following 
                new paragraph:
            ``(6) regularly update the Registry to account for changes 
        in potential donor status;'';
            (3) by redesignating subsection (j) as subsection (l);
            (4) by inserting after subsection (i), the following new 
        subsections:
    ``(j) Patient Advocacy and Case Management.--
            ``(1) Establishment.--The Secretary shall by grant or 
        contract establish and maintain an office of patient advocacy 
        and case management that meets the requirements of this 
        subsection.
            ``(2) Provisions relating to grants and contracts.--
                    ``(A) Application.--To be eligible for a grant or 
                contract under this subsection an entity shall prepare 
                and submit to the Secretary for approval an application 
                that shall be in such form, submitted in such manner, 
                and contain such information as the Secretary shall by 
                regulation prescribe.
                    ``(B) Limitations.--A grant or contract under this 
                subsection shall be for a period of 3 years. No grant 
                or contract may exceed $500,000 for any such year.
            ``(3) Functions.--The office established under paragraph 
        (1) shall--
                    ``(A) be headed by a director who shall serve as an 
                advocate on behalf of--
                            ``(i) individuals who are registered with 
                        the Registry to search for a biologically 
                        unrelated bone marrow donor; and
                            ``(ii) the physicians involved;
                    ``(B) establish and maintain a system for patient 
                advocacy that directly assists patients, their 
                families, and their physicians in a search for an 
                unrelated donor;
                    ``(C) provide individual case management services 
                to directly assist individuals and physicians referred 
                to in subparagraph (A), including--
                            ``(i) individualized case assessment, 
                        tracking of preliminary search through 
                        activation, and follow up when the search 
                        process is interrupted or discontinued;
                            ``(ii) informing individuals and physicians 
                        of progress made in searching for appropriate 
                        donors; and
                            ``(iii) identifying and resolving 
                        individual search problems or concerns;
                    ``(D) collect and analyze data concerning the 
                number and percentage of individuals proceeding from 
                preliminary to formal search and the number and 
                percentage of patients unable to complete the search 
                process; and
                    ``(E) survey patients to evaluate how well such 
                patients are being served and make recommendations for 
                streamlining the search process.
            ``(4) Evaluation.--
                    ``(A) In general.--The Secretary shall evaluate the 
                system established under paragraph (1) and make 
                recommendations to Congress concerning the success or 
                failure of such system in improving patient 
                satisfaction, and any impact the system has had on 
                assisting individuals in proceeding to transplant.
                    ``(B) Report.--Not later than January 1, 1995, the 
                Secretary shall prepare and submit to the Committee on 
                Energy and Commerce of the House of Representatives and 
                the Committee on Labor and Human Resources of the 
                Senate a report concerning the evaluation conducted 
                under subparagraph (A), including the recommendations 
                developed under such subparagraph.
    ``(k) Information and Education Program.--
            ``(1) In general.--The Secretary may award grants to, and 
        enter into contracts with, public or nonprofit private entities 
        for the purpose of increasing bone marrow donation by enabling 
        such entities to--
                    ``(A) plan and conduct programs to provide 
                information and education to the public on the need for 
                donations of bone marrow;
                    ``(B) train individuals in requesting such 
                donations; and
                    ``(C) test and enroll marrow donors.
            ``(2) Enrollment.--Donors enrolled under this subsection 
        with Federal Government funds must be enrolled with the 
        Registry described in section 379. Such donors may be enrolled 
        at other registries.
            ``(3) Priorities.--In awarding grants and contracts under 
        paragraph (1), the Secretary shall give priority to carrying 
        out the purposes described in such paragraph with respect to 
        minority populations and other populations that donate at a 
        rate lower than that of the general public.''; and
            (5) in subsection (l) (as so redesignated), by striking 
        ``1991'' and all that follows and inserting ``1994, and such 
        sums as may be necessary for each of the fiscal years 1995 and 
        1996.''.

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