[Congressional Record Volume 149, Number 174 (Tuesday, November 25, 2003)]
[Senate]
[Pages S16064-S16068]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




              ORGAN DONATION AND RECOVERY IMPROVEMENT ACT

  Mr. McCONNELL. I ask unanimous consent that the Senate proceed to the 
immediate consideration of Calendar No. 410, S. 573.
  The PRESIDING OFFICER. The clerk will report the bill by title.
  The assistant legislative clerk read as follows:

       A bill (S. 573) to amend the Public Health Service Act to 
     promote organ donation, and for other purposes.

  There being no objection, the Senate proceeded to consider the bill 
which had been reported from the Committee on Health, Education, Labor, 
and Pension with an amendment.
  [Strike the part shown in black brackets and insert the part shown in 
italic.]

                                 S. 573

     [SECTION 1. SHORT TITLE.

       [This Act may be cited as the ``Organ Donation and Recovery 
     Improvement Act''.

                 [TITLE I--ORGAN DONATION AND RECOVERY

     [SEC. 101. INTERAGENCY TASK FORCE ON ORGAN DONATION.

       [Part H of title III of the Public Health Service Act (42 
     U.S.C. 273 et seq.) is amended--
       [(1) by redesignating section 378 (42 U.S.C. 274g) as 
     section 378E; and
       [(2) by inserting after section 377 (42 U.S.C. 274f) the 
     following:

     [``SEC. 378. INTER-AGENCY TASK FORCE ON ORGAN DONATION AND 
                   RESEARCH.

       [``(a) In General.--The Secretary shall establish an inter-
     agency task force on organ donation and research (referred to 
     in this section as the `task force') to improve the 
     coordination and evaluation of--
       [``(1) federally supported or conducted organ donation 
     efforts and policies; and
       [``(2) federally supported or conducted basic, clinical and 
     health services research (including research on preservation 
     techniques and organ rejection and compatibility).
       [``(b) Composition.--
       [``(1) In general.--The task force shall be composed of--
       [``(A) the Surgeon General, who shall serve as the 
     chairperson; and
       [``(B) representatives to be appointed by the Secretary 
     from relevant agencies within the Department of Health and 
     Human Services (including the Health Resources and Services 
     Administration, Centers for Medicare & Medicaid Services, 
     National Institutes of Health, and Agency for Healthcare 
     Research and Quality).
       [``(2) Other ex officio members.--The Secretary shall 
     invite the following individuals to serve as ex officio 
     members of the task force:
       [``(A) A representative from the Department of 
     Transportation.
       [``(B) A representative from the Department of Defense.
       [``(C) A representative from the Department of Veterans 
     Affairs.
       [``(D) A representative from the Office of Personnel 
     Management.
       [``(E) A physician representative from the board of 
     directors of the Organ Procurement and Transplantation 
     Network.
       [``(F) Representatives of other Federal agencies or 
     departments as determined to be appropriate by the Secretary.
       [``(c) Annual Report.--In addition to activities carried 
     out under subsection (a), the task force shall support the 
     development of the annual report under section 378D(c).
       [``(d) Termination.--The task force may be terminated at 
     the discretion of the Secretary following the completion of 
     at least 2 annual reports under section 378D(c). Upon such 
     termination, the Secretary shall provide for the on-going 
     coordination of federally supported or conducted organ 
     donation and research activities.''.

     [SEC. 102. DEMONSTRATION PROJECTS, EDUCATION, AND PUBLIC 
                   AWARENESS.

       [Part H of title III of the Public Health Service Act (42 
     U.S.C 273 et seq.) is amended by inserting after section 378, 
     as added by section 101, the following:

     [``SEC. 378A. DEMONSTRATION PROJECTS, EDUCATION, AND PUBLIC 
                   AWARENESS.

       [``(a) Grants To Increase Donation Rates.--The Secretary 
     shall award peer-reviewed grants to public and non-profit 
     private entities, including States, to carry out studies and 
     demonstration projects to increase organ donation and 
     recovery rates, including living donation.
       [``(b) Organ Donation Public Awareness Program.--The 
     Secretary shall establish a public education program in 
     cooperation with existing national public awareness campaigns 
     to increase awareness about organ donation and the need to 
     provide for an adequate rate of such donations.
       [``(c) Development of Curricula and Other Education 
     Activities.--
       [``(1) In general.--The Secretary, in coordination with the 
     Organ Procurement and Transplantation Network and other 
     appropriate organizations, shall support the development and 
     dissemination of model curricula to train health care 
     professionals and other appropriate professionals (including 
     religious leaders in the community, funeral directors, and 
     law enforcement officials) in issues surrounding organ 
     donation, including methods to approach patients and their 
     families, cultural sensitivities, and other relevant issues.
       [``(2) Health care professionals.--For purposes of 
     subparagraph (A), the term `health care professionals' 
     includes--
       [``(A) medical students, residents and fellows, attending 
     physicians (through continuing medical education courses and 
     other methods), nurses, social workers, and other allied 
     health professionals;
       [``(B) hospital- or other health care-facility based 
     chaplains; and
       [``(C) emergency medical personnel.
       [``(d) Limited Demonstration Projects.--
       [``(1) Reports.--Not later than 1 year after the date of 
     enactment of this section, the Secretary shall prepare and 
     submit to the appropriate committees of Congress a report 
     evaluating the ethical implications of proposals for 
     demonstration projects to increase cadaveric donation.
       [``(2) Authority.--Notwithstanding section 301 of the 
     National Organ Transplant Act (42 U.S.C. 274e), upon the 
     submission of and consistent with the report by the Secretary 
     under paragraph (1), the Secretary may conduct up to 3 
     demonstration projects to increase cadaveric donation.
       [``(3) Duration.--Each project shall last no more than 3 
     years, and shall be conducted in a limited number of sites or 
     areas.
       [``(4) Review.--The Secretary shall provide for the ongoing 
     ethical review and evaluation of such projects to ensure that 
     such projects are administered effectively as possible and in 
     accordance with the stated purpose of this subsection under 
     paragraph (2).
       [``(e) Authorization of Appropriations.--There is 
     authorized to be appropriated to carry out this section, 
     $5,000,000 for fiscal year 2004, and such sums as may be 
     necessary for each of the fiscal years 2005 through 2008.

     [``SEC. 378B. GRANTS REGARDING HOSPITAL ORGAN DONATION 
                   COORDINATORS.

       [``(a) Authority.--
       [``(1) In general.--The Secretary may award grants to 
     qualified organ procurement organizations under section 371 
     to establish programs coordinating organ donation activities 
     of eligible hospitals and qualified organ procurement 
     organizations under section 371. Such activities shall be 
     coordinated to increase the rate of organ donations for such 
     hospitals.
       [``(2) Eligible hospital.--For purposes of this section, an 
     eligible hospital is a hospital that performs significant 
     trauma care, or a hospital or consortium of hospitals that 
     serves a population base of not fewer than 200,000 
     individuals.
       [``(b) Administration of Coordination Program.--A condition 
     for the receipt of a grant under subsection (a) is that the 
     applicant involved agree that the program under such 
     subsection will be carried out jointly--
       [``(1) by representatives from the eligible hospital and 
     the qualified organ procurement organization with respect to 
     which the grant is made; and
       [``(2) by such other entities as the representatives 
     referred to in paragraph (1) may designate.
       [``(c) Evaluations.--Within 3 years after the award of 
     grants under this section, the Secretary shall ensure an 
     evaluation of programs carried out pursuant to subsection (a) 
     in order to determine the extent to which the programs have 
     increased the rate of organ donation for the eligible 
     hospitals involved. Such evaluation shall include 
     recommendations on whether the program should be expanded to 
     include other grantees, such as hospitals.
       [``(d) Matching Requirement.--The Secretary may not award a 
     grant to a qualifying organ donation entity under this 
     section unless such entity agrees that, with respect to costs 
     to be incurred by the entity in carrying out activities for 
     which the grant was awarded, the entity shall contribute 
     (directly or through donations from public or private 
     entities) non-Federal contributions in cash or in kind, in an 
     amount equal to not less than 30 percent of the amount of the 
     grant awarded to such entity.
       [``(e) Funding.--For the purpose of carrying out this 
     section, there are authorized to be appropriated $3,000,000 
     for fiscal year 2004, and such sums as may be necessary for 
     each of fiscal years 2005 through 2008.''.

     [SEC. 103. STUDIES RELATING TO ORGAN DONATION AND THE 
                   RECOVERY, PRESERVATION, AND TRANSPORTATION OF 
                   ORGANS.

       [Part H of title III of the Public Health Service Act (42 
     U.S.C. 273 et seq.) is amended by inserting after section 
     378B, as added by section 102, the following:

[[Page S16065]]

     [``SEC. 378C. STUDIES RELATING TO ORGAN DONATION AND THE 
                   RECOVERY, PRESERVATION, AND TRANSPORTATION OF 
                   ORGANS.

       [``(a) Development of Supportive Information.--The 
     Secretary, acting through the Administrator of the Health 
     Resources and Services Administration and the Director of the 
     Agency for Healthcare Research and Quality shall develop 
     scientific evidence in support of efforts to increase organ 
     donation and improve the recovery, preservation, and 
     transportation of organs.
       [``(b) Activities.--In carrying out subsection (a), the 
     Secretary shall--
       [``(1) conduct or support evaluation research to determine 
     whether interventions, technologies, or other activities 
     improve the effectiveness, efficiency, or quality of existing 
     organ donation practice;
       [``(2) undertake or support periodic reviews of the 
     scientific literature to assist efforts of professional 
     societies to ensure that the clinical practice guidelines 
     that they develop reflect the latest scientific findings;
       [``(3) ensure that scientific evidence of the research and 
     other activities undertaken under this section is readily 
     accessible by the organ procurement workforce; and
       [``(4) work in coordination with the appropriate 
     professional societies as well as the Organ Procurement and 
     Transplantation Network and other organ procurement and 
     transplantation organizations to develop evidence and promote 
     the adoption of such proven practices.
       [``(c) Research, Demonstrations, and Training.--The 
     Secretary, acting through the Administrator of the Health 
     Resources and Services Administration and the Director of the 
     Agency for Healthcare Research and Quality, as appropriate, 
     shall provide support for research, demonstrations, and 
     training as appropriate, to--
       [``(1) develop a uniform clinical vocabulary for organ 
     recovery;
       [``(2) apply information technology and telecommunications 
     to support the clinical operations of organ procurement 
     organizations;
       [``(3) enhance the skill levels of the organ procurement 
     workforce in undertaking quality improvement activities; and
       [``(4) assess specific organ recovery, preservation, and 
     transportation technologies.
       [``(d) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there are authorized to be 
     appropriated $5,000,000 for fiscal year 2004, and such sums 
     as may be necessary for each of fiscal years 2005 through 
     2008.''.

     [SEC. 104. REPORTS.

       [Part H of title III of the Public Health Service Act (42 
     U.S.C. 273 et seq.) is amended by inserting after section 
     378C, as added by section 103, the following:

     [``SEC. 378D. REPORTS.

       [``(a) IOM Report on Best Practices.--
       [``(1) In general.--The Secretary shall enter into a 
     contract with the Institute of Medicine to conduct an 
     evaluation of the organ donation practices of organ 
     procurement organizations, States, other countries, and other 
     appropriate organizations.
       [``(2) Considerations.--In conducting the evaluation under 
     paragraph (1), the Institute of Medicine shall examine--
       [``(A) existing barriers to organ donation, including among 
     minority populations; and
       [``(B) best donation and recovery practices, including--
       [``(i) mandated choice and presumed consent;
       [``(ii) organ procurement organization and provider consent 
     practices (including consent best practices);
       [``(iii) the efficacy and reach of existing State routine 
     notification laws with respect to organ procurement 
     organizations;
       [``(iv) the impact of requests for consent in States where 
     registry registration constitutes express consent under State 
     law; and
       [``(v) recommendations with respect to achieving higher 
     donation rates, including among minority populations.
       [``(3) Report.--Not later than 18 months after the date of 
     enactment of this section, the Institute of Medicine shall 
     submit to the Secretary a report concerning the evaluation 
     conducted under this subsection. Such report shall include 
     recommendations for administrative actions and, if necessary, 
     legislation in order to replicate the best practices 
     identified in the evaluation and to otherwise increase organ 
     donation and recovery rates.
       [``(b) IOM Report on Living Donations.--
       [``(1) In general.--The Secretary shall enter into a 
     contract with the Institute of Medicine to conduct an 
     evaluation of living donation practices and procedures. Such 
     evaluation shall include, but is not limited to an assessment 
     of issues relating to informed consent and the health risks 
     associated with living donation (including possible reduction 
     of long-term effects).
       [``(2) Report.--Not later than 18 months after the date of 
     enactment of this section, the Institute of Medicine shall 
     submit to the Secretary a report concerning the evaluation 
     conducted under this subsection.
       [``(c) Report on Donation and Recovery Activities.--
       [``(1) In general.--The Secretary as part of the report 
     specified in 274d shall submit an evaluation concerning 
     federally supported or conducted organ donation and recovery 
     activities, including donation and recovery activities 
     evaluated or conducted under the amendments made by the Organ 
     Donation and Recovery Improvement Act to increase organ 
     donation and recovery rates.
       [``(2) Requirements.--To the extent practicable, each 
     evaluation submitted under paragraph (1) shall--
       [``(A) evaluate the effectiveness of activities, identify 
     best practices, and make recommendations regarding the 
     adoption of best practices with respect to organ donation and 
     recovery; and
       [``(B) assess organ donation and recovery activities that 
     are recently completed, ongoing, or planned.''.

     [SEC. 105. TECHNICAL AMENDMENT CONCERNING ORGAN PURCHASES.

       [Section 301(c)(2) of the National Organ Transplant Act (42 
     U.S.C. 274e(c)(2)) is amended by adding at the end the 
     following: ``Such term does not include familial, emotional, 
     psychological, or physical benefit to an organ donor, 
     recipient, or any other party to an organ donation event.''.

                  [TITLE II--LIVING DONATION EXPENSES

     [SEC. 201. REIMBURSEMENT OF TRAVEL AND SUBSISTENCE EXPENSES 
                   INCURRED TOWARD LIVING ORGAN DONATION.

       [Section 377 of the Public Health Service Act (42 U.S.C. 
     274f) is amended to read as follows:

     [``SEC. 377. REIMBURSEMENT OF TRAVEL AND SUBSISTENCE EXPENSES 
                   INCURRED TOWARD LIVING ORGAN DONATION.

       [``(a) In General.--The Secretary may award grants to 
     States, transplant centers, qualified organ procurement 
     organizations under section 371, or other public or private 
     entities for the purpose of--
       [``(1) providing for the reimbursement of travel and 
     subsistence expenses incurred by individuals toward making 
     living donations of their organs (in this section referred as 
     `donating individuals'); and
       [``(2) providing for the reimbursement of such incidental 
     nonmedical expenses that are so incurred as the Secretary 
     determines by regulation to be appropriate.
       [``(b) Preference.--The Secretary shall, in carrying out 
     subsection (a), give preference to those individuals that the 
     Secretary determines are more likely to be otherwise unable 
     to meet such expenses.
       [``(c) Certain Circumstances.--The Secretary may, in 
     carrying out subsection (a), consider--
       [``(1) the term `donating individuals' as including 
     individuals who in good faith incur qualifying expenses 
     toward the intended donation of an organ but with respect to 
     whom, for such reasons as the Secretary determines to be 
     appropriate, no donation of the organ occurs; and
       [``(2) the term `qualifying expenses' as including the 
     expenses of having relatives or other individuals, not to 
     exceed 2, who accompany or assist the donating individual for 
     purposes of subsection (a) (subject to making payment for 
     only such types of expenses as are paid for donating 
     individual).
       [``(d) Relationship to Payments Under Other Programs.--An 
     award may be made under subsection (a) only if the applicant 
     involved agrees that the award will not be expended to pay 
     the qualifying expenses of a donating individual to the 
     extent that payment has been made, or can reasonably be 
     expected to be made, with respect to such expenses--
       [``(1) under any State compensation program, under an 
     insurance policy, or under any Federal or State health 
     benefits program;
       [``(2) by an entity that provides health services on a 
     prepaid basis; or
       [``(3) by the recipient of the organ.
       [``(e) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there is authorized to be 
     appropriated $5,000,000 for fiscal year 2004, and such sums 
     as may be necessary for each of fiscal years 2005 through 
     2008.''.

                      [TITLE III--ORGAN REGISTRIES

     [SEC. 301. ADVISORY COMMITTEE.

       [Part H of title III of the Public Health Service Act (42 
     U.S.C. 273 et seq.) is amended by inserting after section 371 
     the following:

     [``SEC. 371A. ADVISORY COMMITTEE.

       [``(a) In General.--Not later than 6 months after 
     enactment, the Secretary shall establish an advisory 
     committee to study existing organ donor registries and make 
     recommendations to Congress regarding the costs, benefits, 
     and expansion of such registries.
       [``(b) Membership.--The committee shall be composed of 10 
     members of whom--
       [``(1) at least 1 member shall be a physician with 
     experience performing transplants;
       [``(2) at least 1 member shall have experience in organ 
     recovery;
       [``(3) at least 1 member shall be representative of an 
     organization with experience conducting national awareness 
     campaigns and donor outreach;
       [``(4) at least 1 member shall be representative of a State 
     with an existing donor registry;
       [``(5) at least 1 member shall have experience with 
     national information systems where coordination occurs with 
     State-based systems; and
       [``(6) at least 1 member shall represent donor families, 
     transplant recipients, and those awaiting transplantation.
       [``(c) Initial Meeting.--Not later than 30 days after the 
     date on which all members of the committee have been 
     appointed, the committee shall hold its first meeting.
       [``(d) Meetings.--The committee shall meet at the call of 
     the Chairman who shall be selected by the Secretary.
       [``(e) Compensation.--Each member of the committee shall 
     not receive compensation for services provided under this 
     section.

[[Page S16066]]

       [``(f) Travel Expenses.--The members of the committee shall 
     be allowed travel expenses, including per diem in lieu of 
     subsistence, at rates authorized for employees of agencies 
     under subchapter I of chapter 57 of title 5, United States 
     Code, while away from their homes or regular places of 
     business in the performance of services for the committee.
       [``(g) Administrative Support.--The Secretary shall ensure 
     that the committee is provided with administrative support or 
     any other technical assistance that such committee needs in 
     carrying out its duties.
       [``(h) Permanent Committee.--Section 14 of the Federal 
     Advisory Committee Act shall not apply to the committee 
     established under this section.
       [``(i) Report.--Not later than 1 year after the date on 
     which the committee is established under subsection (a), the 
     committee shall prepare and submit to Congress a report 
     regarding the status of organ donor registries, current best 
     practices, the effect of organ donor registries on organ 
     donation rates, the merits of expanding organ donor 
     registries, issues relating to consent, the efficacy of 
     current privacy protections, potential forms of technical 
     assistance, and recommendations regarding improving the 
     effectiveness and establishing formal linkages between organ 
     donor registries.
       [``(j) Definition.--In this section, the term `organ donor 
     registry' means a listing of individuals who have indicated 
     their desire to donate their organs and tissue upon their 
     death through driver's license preferences or other formal 
     mechanisms.''.

     [SEC. 302. NATIONAL LIVING DONOR REGISTRY.

       [Part H of title III of the Public Health Service Act (42 
     U.S.C. 273 et seq.), as amended by section 301, is further 
     amended by inserting after section 371A the following:

     [``SEC. 371B. NATIONAL LIVING DONOR REGISTRY.

       [``The Secretary shall by contract establish and maintain a 
     registry of individuals who have served as living organ 
     donors for the purpose of evaluating the long-term health 
     effects associated with living organ donations.''.

     [SEC. 303. QUALIFIED ORGAN PROCUREMENT ORGANIZATIONS.

       [Section 371(a) of the Public Health Service Act (42 U.S.C. 
     273(a)) is amended by striking paragraph (3).]

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Organ Donation and Recovery 
     Improvement Act''.

     SEC. 2. SENSE OF CONGRESS.

       (a) Public Awareness of Need for Organ Donation.--It is the 
     sense of Congress that the Federal Government should carry 
     out programs to educate the public with respect to organ 
     donation, including the need to provide for an adequate rate 
     of such donations.
       (b) Family Discussions of Organ Donations.--Congress 
     recognizes the importance of families pledging to each other 
     to share their lives as organ and tissue donors and 
     acknowledges the importance of discussing organ and tissue 
     donation as a family.
       (c) Living Donations of Organs.--Congress--
       (1) recognizes the generous contribution made by each 
     living individual who has donated an organ to save a life; 
     and
       (2) acknowledges the advances in medical technology that 
     have enabled organ transplantation with organs donated by 
     living individuals to become a viable treatment option for an 
     increasing number of patients.

     SEC. 3. REIMBURSEMENT OF TRAVEL AND SUBSISTENCE EXPENSES 
                   INCURRED TOWARD LIVING ORGAN DONATION.

       Section 377 of the Public Health Service Act (42 U.S.C. 
     274f) is amended to read as follows:

     ``SEC. 377. REIMBURSEMENT OF TRAVEL AND SUBSISTENCE EXPENSES 
                   INCURRED TOWARD LIVING ORGAN DONATION.

       ``(a) In General.--The Secretary may award grants to 
     States, transplant centers, qualified organ procurement 
     organizations under section 371, or other public or private 
     entities for the purpose of--
       ``(1) providing for the reimbursement of travel and 
     subsistence expenses incurred by individuals toward making 
     living donations of their organs (in this section referred to 
     as `donating individuals'); and
       ``(2) providing for the reimbursement of such incidental 
     nonmedical expenses that are so incurred as the Secretary 
     determines by regulation to be appropriate.
       ``(b) Preference.--The Secretary shall, in carrying out 
     subsection (a), give preference to those individuals that the 
     Secretary determines are more likely to be otherwise unable 
     to meet such expenses.
       ``(c) Certain Circumstances.--The Secretary may, in 
     carrying out subsection (a), consider--
       ``(1) the term `donating individuals' as including 
     individuals who in good faith incur qualifying expenses 
     toward the intended donation of an organ but with respect to 
     whom, for such reasons as the Secretary determines to be 
     appropriate, no donation of the organ occurs; and
       ``(2) the term `qualifying expenses' as including the 
     expenses of having relatives or other individuals, not to 
     exceed 2, who accompany or assist the donating individual for 
     purposes of subsection (a) (subject to making payment for 
     only those types of expenses that are paid for a donating 
     individual).
       ``(d) Relationship to Payments Under Other Programs.--An 
     award may be made under subsection (a) only if the applicant 
     involved agrees that the award will not be expended to pay 
     the qualifying expenses of a donating individual to the 
     extent that payment has been made, or can reasonably be 
     expected to be made, with respect to such expenses--
       ``(1) under any State compensation program, under an 
     insurance policy, or under any Federal or State health 
     benefits program;
       ``(2) by an entity that provides health services on a 
     prepaid basis; or
       ``(3) by the recipient of the organ.
       ``(e) Definitions.--For purposes of this section:
       ``(1) The term `donating individuals' has the meaning 
     indicated for such term in subsection (a)(1), subject to 
     subsection (c)(1).
       ``(2) The term `qualifying expenses' means the expenses 
     authorized for purposes of subsection (a), subject to 
     subsection (c)(2).
       ``(f) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there is authorized to be 
     appropriated $5,000,000 for each of the fiscal years 2004 
     through 2008.''.

     SEC. 4. PUBLIC AWARENESS; STUDIES AND DEMONSTRATIONS.

       Part H of title III of the Public Health Service Act (42 
     U.S.C. 273 et seq.) is amended by inserting after section 377 
     the following:

     ``SEC. 377A. PUBLIC AWARENESS; STUDIES AND DEMONSTRATIONS.

       ``(a) Organ Donation Public Awareness Program.--The 
     Secretary shall, directly or through grants or contracts, 
     establish a public education program in cooperation with 
     existing national public awareness campaigns to increase 
     awareness about organ donation and the need to provide for an 
     adequate rate of such donations.
       ``(b) Studies and Demonstrations.--The Secretary may make 
     peer reviewed grants or contracts to public and nonprofit 
     private entities for the purpose of carrying out studies and 
     demonstration projects to increase organ donation and 
     recovery rates, including living donation.
       ``(c) Grants to States.--The Secretary may make grants to 
     States for the purpose of assisting States in carrying out 
     organ donor awareness, public education and outreach 
     activities, and programs designed to increase the number of 
     organ donors within the State, including living donors. To be 
     eligible, each State shall--
       ``(1) submit an application to the Department in the form 
     prescribed;
       ``(2) establish yearly benchmarks for improvement in organ 
     donation rates in the State; and
       ``(3) report to the Secretary on an annual basis a 
     description and assessment of the State's use of these grant 
     funds, accompanied by an assessment of initiatives for 
     potential replication in other States.

     Funds may be used by the State or in partnership with other 
     public agencies or private sector institutions for education 
     and awareness efforts, information dissemination, activities 
     pertaining to the State donor registry, and other innovative 
     donation specific initiatives, including living donation.
       ``(d) Educational Activities.--The Secretary, in 
     coordination with the Organ Procurement and Transplantation 
     Network and other appropriate organizations, shall support 
     the development and dissemination of educational materials to 
     inform health care professionals and other appropriate 
     professionals in issues surrounding organ, tissue, and eye 
     donation including evidence-based proven methods to approach 
     patients and their families, cultural sensitivities, and 
     other relevant issues.
       ``(e) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there are authorized to be 
     appropriated $15,000,000 for fiscal year 2004, and such sums 
     as may be necessary for each of the fiscal years 2005 through 
     2008. Such authorization of appropriations is in addition to 
     any other authorizations of appropriations that are available 
     for such purpose.

     ``SEC. 377B. GRANTS REGARDING HOSPITAL ORGAN DONATION 
                   COORDINATORS.

       ``(a) Authority.--
       ``(1) In general.--The Secretary may award grants to 
     qualified organ procurement organizations and hospitals under 
     section 371 to establish programs coordinating organ donation 
     activities of eligible hospitals and qualified organ 
     procurement organizations under section 371. Such activities 
     shall be coordinated to increase the rate of organ donations 
     for such hospitals.
       ``(2) Eligible hospital.--For purposes of this section, an 
     eligible hospital is a hospital that performs significant 
     trauma care, or a hospital or consortium of hospitals that 
     serves a population base of not fewer than 200,000 
     individuals.
       ``(b) Administration of Coordination Program.--A condition 
     for the receipt of a grant under subsection (a) is that the 
     applicant involved agree that the program under such 
     subsection will be carried out jointly--
       ``(1) by representatives from the eligible hospital and the 
     qualified organ procurement organization with respect to 
     which the grant is made; and
       ``(2) by such other entities as the representatives 
     referred to in paragraph (1) may designate.
       ``(c) Requirements.--Each entity receiving a grant under 
     subsection (a) shall--
       ``(1) establish joint organ procurement organization and 
     hospital designated leadership responsibility and 
     accountability for the project;
       ``(2) develop mutually agreed upon overall project 
     performance goals and outcome measures, including interim 
     outcome targets; and
       ``(3) collaboratively design and implement an appropriate 
     data collection process to provide ongoing feedback to 
     hospital and organ procurement organization leadership on 
     project progress and results.
       ``(d) Rule of Construction.--Nothing in this section shall 
     be construed to interfere with regulations in force on the 
     date of enactment of the Organ Donation and Recovery 
     Improvement Act.
       ``(e) Evaluations.--Within 3 years after the award of 
     grants under this section, the Secretary shall ensure an 
     evaluation of programs

[[Page S16067]]

     carried out pursuant to subsection (a) in order to determine 
     the extent to which the programs have increased the rate of 
     organ donation for the eligible hospitals involved.
       ``(f) Matching Requirement.--The Secretary may not award a 
     grant to a qualifying organ donation entity under this 
     section unless such entity agrees that, with respect to costs 
     to be incurred by the entity in carrying out activities for 
     which the grant was awarded, the entity shall contribute 
     (directly or through donations from public or private 
     entities) non-Federal contributions in cash or in kind, in an 
     amount equal to not less than 30 percent of the amount of the 
     grant awarded to such entity.
       ``(g) Funding.--For the purpose of carrying out this 
     section, there are authorized to be appropriated $3,000,000 
     for fiscal year 2004, and such sums as may be necessary for 
     each of fiscal years 2005 through 2008.''.

     SEC. 5. STUDIES RELATING TO ORGAN DONATION AND THE RECOVERY, 
                   PRESERVATION, AND TRANSPORTATION OF ORGANS.

       Part H of title III of the Public Health Service Act (42 
     U.S.C. 273 et seq.) is amended by inserting after section 
     377B, as added by section 4, the following:

     ``SEC. 377C. STUDIES RELATING TO ORGAN DONATION AND THE 
                   RECOVERY, PRESERVATION, AND TRANSPORTATION OF 
                   ORGANS.

       ``(a) Development of Supportive Information.--The 
     Secretary, acting through the Director of the Agency for 
     Healthcare Research and Quality shall develop scientific 
     evidence in support of efforts to increase organ donation and 
     improve the recovery, preservation, and transportation of 
     organs.
       ``(b) Activities.--In carrying out subsection (a), the 
     Secretary shall--
       ``(1) conduct or support evaluation research to determine 
     whether interventions, technologies, or other activities 
     improve the effectiveness, efficiency, or quality of existing 
     organ donation practice;
       ``(2) undertake or support periodic reviews of the 
     scientific literature to assist efforts of professional 
     societies to ensure that the clinical practice guidelines 
     that they develop reflect the latest scientific findings;
       ``(3) ensure that scientific evidence of the research and 
     other activities undertaken under this section is readily 
     accessible by the organ procurement workforce; and
       ``(4) work in coordination with the appropriate 
     professional societies as well as the Organ Procurement and 
     Transplantation Network and other organ procurement and 
     transplantation organizations to develop evidence and promote 
     the adoption of such proven practices.
       ``(c) Research and Dissemination.--The Secretary, acting 
     through the Director of the Agency for Healthcare Research 
     and Quality, as appropriate, shall provide support for 
     research and dissemination of findings, to--
       ``(1) develop a uniform clinical vocabulary for organ 
     recovery;
       ``(2) apply information technology and telecommunications 
     to support the clinical operations of organ procurement 
     organizations;
       ``(3) enhance the skill levels of the organ procurement 
     workforce in undertaking quality improvement activities; and
       ``(4) assess specific organ recovery, preservation, and 
     transportation technologies.
       ``(d) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there are authorized to be 
     appropriated $2,000,000 for fiscal year 2004, and such sums 
     as may be necessary for each of fiscal years 2005 through 
     2008.''.

     SEC. 6. REPORT RELATING TO ORGAN DONATION AND THE RECOVERY, 
                   PRESERVATION, AND TRANSPORTATION OF ORGANS.

       Part H of title III of the Public Health Service Act (42 
     U.S.C. 273 et seq.) is amended by inserting after section 
     377C, as added by section 5, the following:

     ``SEC. 377D. REPORT RELATING TO ORGAN DONATION AND THE 
                   RECOVERY, PRESERVATION, AND TRANSPORTATION OF 
                   ORGANS.

       ``(a) In General.--Not later than December 31, 2005, and 
     every 2 years thereafter, the Secretary shall report to the 
     appropriate committees of Congress on the activities of the 
     Department carried out pursuant to this part, including an 
     evaluation describing the extent to which the activities have 
     affected the rate of organ donation and recovery.
       ``(b) Requirements.--To the extent practicable, each report 
     submitted under subsection (a) shall--
       ``(1) evaluate the effectiveness of activities, identify 
     effective activities, and disseminate such findings with 
     respect to organ donation and recovery;
       ``(2) assess organ donation and recovery activities that 
     are recently completed, ongoing, or planned; and
       ``(3) evaluate progress on the implementation of the plan 
     required under subsection (c)(4).
       ``(c) Initial Report Requirements.--The initial report 
     under subsection (a) shall include the following:
       ``(1) An evaluation of the organ donation practices of 
     organ procurement organizations, States, other countries, and 
     other appropriate organizations including an examination 
     across all populations, including those with low organ 
     donation rates, of--
       ``(A) existing barriers to organ donation; and
       ``(B) the most effective donation and recovery practices.
       ``(2) An evaluation of living donation practices and 
     procedures. Such evaluation shall include an assessment of 
     issues relating to informed consent and the health risks 
     associated with living donation (including possible reduction 
     of long-term effects).
       ``(3) An evaluation of--
       ``(A) federally supported or conducted organ donation 
     efforts and policies, as well as federally supported or 
     conducted basic, clinical, and health services research 
     (including research on preservation techniques an organ 
     rejection and compatibility); and
       ``(B) the coordination of such efforts across relevant 
     agencies within the Department and throughout the Federal 
     Government.
       ``(4) An evaluation of the costs and benefits of State 
     donor registries, including the status of existing State 
     donor registries, the effect of State donor registries on 
     organ donation rates, issues relating to consent, and 
     recommendations regarding improving the effectiveness of 
     State donor registries in increasing overall organ donation 
     rates.
       ``(5) A plan to improve federally supported or conducted 
     organ donation and recovery activities, including, when 
     appropriate, the establishment of baselines and benchmarks to 
     measure overall outcomes of these programs. Such plan shall 
     provide for the ongoing coordination of federally supported 
     or conducted organ donation and research activities.''.

     SEC. 7. NATIONAL LIVING DONOR MECHANISMS.

       Part H of title III of the Public Health Service Act (42 
     U.S.C. 273 et seq.), is amended by inserting after section 
     371 the following:

     ``SEC. 371A. NATIONAL LIVING DONOR MECHANISMS.

       ``The Secretary is authorized to establish and maintain 
     mechanisms to evaluate the long-term effects associated with 
     living organ donations by individuals who have served as 
     living donors.''.

     SEC. 8. STUDY.

       Not later than December 31, 2004, the Secretary of Health 
     and Human Services, in consultation with appropriate 
     entities, including advocacy groups representing those 
     populations that are likely to be disproportionately affected 
     by proposals to increase cadaveric donation, shall submit to 
     the appropriate committees of Congress a report that 
     evaluates the ethical implications of such proposals.

     SEC. 9. QUALIFIED ORGAN PROCUREMENT ORGANIZATIONS.

       Section 371(a) of the Public Health Service Act (42 U.S.C. 
     273(a)) is amended by striking paragraph (3).


         african americans on the organ transplant waiting list

  Mr. KENNEDY. Mr. President, I wish to engage in a colloquy with the 
distinguished majority leader, the Senator from Tennessee, Mr. Frist. I 
appreciate his efforts on the bill before us today, and agree that this 
is a vitally important area. I believe this bill represents a good 
first step, but I would point out that minorities comprise over 40 
percent of the organ transplant waiting list, even though they 
represent approximately 25 percent of the population. Half of the 
patients who needlessly die while awaiting a transplant are minorities.
  African Americans are more likely to have end stage renal disease 
because they have the highest rate of hypertension in the world. Almost 
40 percent of Americans on the waiting list for kidneys are African 
American, but they receive only 20 percent of available kidneys.
  Evidence suggests that African Americans may face discrimination 
during the transplantation process. White patients are 5 times more 
likely than African Americans to receive transplants, even when they 
are equally qualified.
  We must increase our commitment to ending health disparities. I 
believe that more must be done to improve the rates of organ donation 
among minority communities and focus specifically among these 
populations to determine what the barriers to organ donation and 
transplantation currently are, as well as devise mechanisms to reduce 
or eliminate such barriers.
  I am disappointed that the legislation did not include provisions to 
directly address the disparity in organ donation and transplantation 
and the special needs of minority populations. I had hoped to include 
these provisions.
  Nonetheless, the need to enhance organ donation is too compelling to 
ignore, and for that reason, I am supporting the current legislation. 
It is our expectation that recipients of grant awards and contracts 
authorized under this Act will include consideration of minority 
concerns in all activities.
  I hope to work with the majority leader next year to address this 
critical issue.
  Mr. FRIST. I appreciate the remarks of the Senator from 
Massachusetts. As the Senator knows, the question of health care 
disparities is a keenly important issue to me. He and I have 
successfully worked in this area in the past, and I hope will be able 
to similarly collaborate in the future.
  Much work in the area of minorities and organ donation is happening 
today.

[[Page S16068]]

These issues were strong recommendations of the Secretary's Advisory 
Committee on Transplantation, and COT in fact went further and 
requested a study from NIH to define the reasons for African Americans 
to have diminished graft survival. And just earlier this fall, HRSA 
announced 8 grants that it was funding to test social and behavioral 
interventions to increase organ and tissue donation--five of these, 
totaling more than $1.6 million, focused on minority and underserved 
populations.
  And we have a bill today that has been developed through a 
bipartisan, bicameral process intended to allow us to make quick action 
on the bill. I appreciate the Senator's willingness to support this 
bill, and look forward to working with him in this area next year.
  Mr. KENNEDY. I commend his work and congratulate him on passage of 
this bill. I look forward to working with the Senator from Tennessee 
and others to build on this important start and draft bipartisan 
legislation in the next session to address the unique health and health 
care needs of minority and underserved populations.
  Mr. McCONNELL. I ask unanimous consent that the committee substitute 
be agreed to; the bill, as amended, be read the third time and passed; 
the motion to reconsider be laid upon the table, and any statements be 
printed in the Record.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The committee amendment in the nature of a substitute was agreed to.
  The bill (S. 573), as amended, was read the third time and passed.

                          ____________________