[Congressional Record Volume 149, Number 36 (Thursday, March 6, 2003)]
[Senate]
[Pages S3329-S3333]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. FRIST (for himself, Mr. Dodd, and Mr. Enzi):
  S. 573. A bill to amend the Public Health Service Act to promote 
organ donation, and for other purposes; to the Committee on Health, 
Education, Labor and Pensions.
  Mr. FRIST. Mr. President, this year, due to the rapid and tremendous 
advancements in our knowledge and in the science of organ 
transplantation, thousands of Americans will receive a life-saving 
organ transplant. These advances have allowed us to save the lives of 
patients who were once not considered candidates for transplantation.
  As a heart and lung transplant surgeon, I have had the opportunity to 
watch the field develop and grow over the past three decades. I 
remember my own experiences--of conducting some of the first 
transplants using hearts and lungs--and recognize our tremendous 
progress since that time. And I also know the hundreds of my own 
patients who live improved lives due to advances in transplantation.
  But I have also shared in the grief of patients who died before they 
could receive a transplant--a direct result of a large and growing 
shortage of organ donors. Medical advances have produced a staggering 
increase in the number of eligible transplant candidates, while the 
supply of organs fails to keep pace. Today, more than 80,000 patients 
await a transplant (a four-fold increase from just over a decade ago). 
At the same time, more patients die each year before they can receive 
that life-saving organ.
  I have also witnessed firsthand how great, lifesaving hope can spring 
from great tragedy. Earlier this year, I offered my assistance at the 
scene of a horrible automobile accident in Florida. Most of the family 
in the accident died--including two young children. While my heart goes 
out to his family for their terrible loss, from this tragedy has come 
new life. This family agreed to donate the organs of their loved ones. 
This gift has saved the life of a boy from the Virgin Islands. We must 
honor this family, and all other donor families, by redoubling our 
efforts to increasing organ donation.
  There is no need for people to die while awaiting a new organ. In my 
practice, I carried a card that listed my patients who were waiting on 
hearts--always aware that several of them would die before a live-
saving organ would become available. It was this needless loss of life 
that was the most painful, most frustrating and most disappointing part 
of my work.
  In 2000, there were almost 23,000 transplants--a significant increase 
over the roughly 13,000 transplant performed in 1988. Between 1990 and 
2001, the number of organ donors almost doubled, mainly as a result of 
an increase in organs from live donors. In fact, over those ten years, 
the number of cadaveric donors increased only 35 percent while the 
demand for transplant has more than tripled.
  More must be done. There are simply not enough organ donors; public 
awareness has not kept up with the rapid advances of transplantation. 
It is our duty to do all we can to raise awareness about the gift of 
life.
  We must do is work to encourage all Americans to share their desire 
to be an organ donor with their families.
  We must find other ways to improve organ donation--to identify 
eligible organs and work with families to help them better understand 
the value of donation. This is a new science--one that I have had the 
privilege of watching firsthand grow from theories and experiments to 
accepted medical practice. My mentor, Dr. Norman Shumway, was one of 
the leaders in the field; and the advent of cyclosporin was critical to 
its progress. But much remains to be learned, and we must continue to 
move forward.
  That is why one of my first priorities when I came to the Senate in 
1995 was

[[Page S3330]]

to establish the Congressional Task Force on Organ Donation--to promote 
awareness of this important issue and encourage a new dialogue seeking 
answers.
  Recent years have witnessed a new emphasis on highlighting public 
awareness of this need. In particular, I commend Secretary Thompson for 
making organ donation a top priority at the Department of Health and 
Human Services.
  There also are a number of complementary legislative approaches that 
we should pursue towards this end.
  We should provide funding for innovative and bold demonstration 
projects to improve donation and recovery rates. As part of this, we 
should ensure that the projects' results will be evaluated quickly and 
their lessons be disseminated broadly.
  We should provide for the placement and evaluation of organ donation 
coordinators in hospitals--a model that has worked with success in 
other countries.
  We should expand the authority of the Agency for Healthcare Research 
and Quality to conduct important research on the recovery, preservation 
and transportation of organs. The science of organ transplantation has 
been improved and refined since its inception. Yet all too often, organ 
donation efforts are conducted under the same practices as they were 
twenty years ago. We must establish a strong evidence-based approach to 
enhancing organ donation and recovery.
  We must encourage living organ donation by reducing potential 
financial disincentives facing living donors through the reimbursement 
of travel and other expenses incurred by living donors and their 
families.
  We must also seriously evaluate the long-term health effects of 
serving as a living donor by asking the Institute of Medicine to report 
on this issue and by establishing a living donor registry to track the 
health of individuals who have served as living organ donors.
  We must seriously examine and improve the role of organ donor 
registries. These programs have an important role to play in improving 
organ donation rates and have been used with different levels of 
success in some states. However, a number of questions surrounding 
registries remain unanswered and their effectiveness has not been fully 
evaluated.
  We must undertake a high-level systematic examination of the 
effectiveness of a range of organ donation approaches. Specifically, 
the Institute of Medicine should evaluate practices or organ 
procurement organizations, States, and other countries. This study 
should examine existing barriers to organ donation, as well as best 
donation and recovery practices, such as mandated choice and presumed 
consent. The study should evaluate consent practices, existing state 
routine notification laws, and the impact of requests for consent where 
registry listing constitutes express consent under State law. This 
review should be timely and include recommendations for action 
necessary to replicate the best practices identified and to otherwise 
increase organ donation rates.
  We must recognize and honor the sacrificial decisions to give consent 
and give the gift of life made each year by thousands of donors and 
families. We must do this in such a way as to honor those sharing life 
through donation and increase public awareness of this issue.
  These initiatives are contained within two important pieces of 
legislation I am introducing today.
  The Organ Donation and Recovery Improvement Act is a bipartisan, 
comprehensive bill that seeks to improve the overall process of organ 
donation and recovery, enhance our knowledge base in these fields, 
encourage novel approaches to this growing problem and increase the 
number of organs available for transplants each year. The bill also 
seeks to remove potential barriers to donation, while identifying and 
focusing on best practices in organ donation. I thank Senator 
Christopher Dodd and Senator Mike Enzi for their assistance on this 
important bill. I also want to thank the wide range of patient and 
organ transplantation organizations who have done good work on this 
bill, including the American Society of Transplantation, American 
Society of Transplant Surgeons, North American Transplant Coordinators 
Organization, Tennessee Donor Services, New Mexico Donor Services, and 
Golden State Donor Services.
  The Gift of Life Congressional Medal Act will make each donor or 
donor family eligible to receive a commemorative Congressional medal. 
This legislation, which does not cost taxpayers a penny, will recognize 
the thousands of individuals each year who share the gift of life 
through organ donation. Moreover, it will encourage potential donors 
and enhance public awareness of the importance of organ donation to the 
over 80,000 Americans waiting for a transplant. Representative Pete 
Stark will soon be introducing the companion bill in the House of 
Representatives, and I thank him for his dedication in this area.
  Organ donation is one of the most important issues before us today. 
Each year, thousands of donors and families make the important decision 
to give consent and give the gift of life. We must recognize and honor 
their sacrifice, and, in so honoring, work to increase donation rates 
and allow more families to receive this gift of life each year. 
Hundreds of my own patients are alive today because of this gift. Let 
us work together to allow more patients and families to experience this 
miracle.
  I ask unanimous consent that the text of the bills printed in the 
Record.

                                 S. 572

       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 ``Gift of Life Congressional 
     Medal Act of 2003''.

     SEC. 2. CONGRESSIONAL MEDAL.

       The Secretary of the Treasury shall design and strike a 
     bronze medal with suitable emblems, devices, and 
     inscriptions, to be determined by the Secretary of the 
     Treasury, to commemorate organ donors and their families.

     SEC. 3. ELIGIBILITY REQUIREMENTS.

       (a) In General.--Any organ donor, or the family or family 
     member of any organ donor, shall be eligible for a medal 
     described in section 2.
       (b) Documentation.--The Secretary of Health and Human 
     Services shall direct the entity holding the Organ 
     Procurement and Transplantation Network (hereafter in this 
     Act referred to as ``OPTN'') to contract to--
       (1) establish an application procedure requiring the 
     relevant organ procurement organization, as described in 
     section 371(b)(1) of the Public Health Service Act (42 U.S.C. 
     273(b)(1)), through which an individual or their family made 
     an organ donation, to submit to the OPTN contractor 
     documentation supporting the eligibility of that individual 
     or their family to receive a medal described in section 2; 
     and
       (2) determine, through the documentation provided, and, if 
     necessary, independent investigation, whether the individual 
     or family is eligible to receive a medal described in section 
     2.

     SEC. 4. PRESENTATION.

       (a) Delivery to the Secretary of Health and Human 
     Services.--The Secretary of the Treasury shall deliver medals 
     struck pursuant to this Act to the Secretary of Health and 
     Human Services.
       (b) Delivery to Eligible Recipients.--The Secretary of 
     Health and Human Services shall direct the OPTN contractor to 
     arrange for the presentation to the relevant organ 
     procurement organization all medals struck pursuant to this 
     Act to individuals or families that, in accordance with 
     section 3, the OPTN contractor has determined to be eligible 
     to receive medals under this Act.
       (c) Limitation.--
       (1) In general.--Except as provided in paragraph (2), only 
     1 medal may be presented to a family under subsection (b). 
     Such medal shall be presented to the donating family member, 
     or in the case of a deceased donor, the family member who 
     signed the consent form authorizing, or who otherwise 
     authorized, the donation of the organ involved.
       (2) Exception.--In the case of a family in which more than 
     1 member is an organ donor, the OPTN contractor may present 
     an additional medal to each such organ donor or their family.

     SEC. 5. DUPLICATE MEDALS.

       (a) In General.--The Secretary of Health and Human Services 
     or the OPTN contractor may provide duplicates of the medal 
     described in section 2 to any recipient of a medal under 
     section 4(b), under such regulations as the Secretary of 
     Health and Human Services may issue.
       (b) Limitation.--The price of a duplicate medal shall be 
     sufficient to cover the cost of such duplicates.

     SEC. 6. NATIONAL MEDALS.

       The medals struck pursuant to this Act are national medals 
     for purposes of section 5111 of title 31, United States Code.

     SEC. 7. GENERAL WAIVER OF PROCUREMENT REGULATIONS.

       No provision of law governing procurement or public 
     contracts shall be applicable to the procurement of goods or 
     services necessary for carrying out the provisions of this 
     Act.

     SEC. 8. SOLICITATION OF DONATIONS.

       (a) In General.--The Secretary of the Treasury may enter 
     into an agreement with the OPTN contractor to collect funds 
     to offset expenditures relating to the issuance of medals 
     authorized under this Act.

[[Page S3331]]

       (b) Payment of Funds.--
       (1) In general.--Except as provided in paragraph (2), all 
     funds received by the Organ Procurement and Transplantation 
     Network under subsection (a) shall be promptly paid by the 
     Organ Procurement and Transplantation Network to the 
     Secretary of the Treasury.
       (2) Limitation.--Not more than 5 percent of any funds 
     received under subsection (a) shall be used to pay 
     administrative costs incurred by the OPTN contractor as a 
     result of an agreement established under this section.
       (c) Numismatic Public Enterprise Fund.--Notwithstanding any 
     other provision of law--
       (1) all amounts received by the Secretary of the Treasury 
     under subsection (b)(1) shall be deposited in the Numismatic 
     Public Enterprise Fund, as described in section 5134 of title 
     31, United States Code; and
       (2) the Secretary of the Treasury shall charge such fund 
     with all expenditures relating to the issuance of medals 
     authorized under this Act.
       (d) Start-Up Costs.--A 1-time amount not to exceed $55,000 
     shall be provided to the OPTN contractor to cover initial 
     start-up costs. The amount will be paid back in full within 3 
     years of the date of the enactment of this Act from funds 
     received under subsection (a).
       (e) No Net Cost to the Government.--The Secretary of the 
     Treasury shall take all actions necessary to ensure that the 
     issuance of medals authorized under section 2 results in no 
     net cost to the Government.

     SEC. 9. DEFINITIONS.

       In this Act:
       (1) Organ.--The term ``organ'' means the human kidney, 
     liver, heart, lung, pancreas, and any other human organ 
     (other than corneas and eyes) specified by regulation of the 
     Secretary of Health and Human Services or the OPTN 
     contractor.
       (2) Organ procurement and transplantation network.--The 
     term ``Organ Procurement and Transplantation Network'' means 
     the Organ Procurement and Transplantation Network established 
     under section 372 of the Public Health Service Act (42 U.S.C. 
     274).

     SEC. 10. SUNSET PROVISION.

       This Act shall be effective during the 5-year period 
     beginning on the date of the enactment of this Act.

                                 S. 573

       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 ``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 representatives 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; and
       ``(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,

[[Page S3332]]

     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:

     ``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

[[Page S3333]]

       ``(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.
       ``(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).
  Mr. DODD. Mr. President, for tragic reasons, organ donation has been 
in the spotlight of late. On Saturday, February 23, 2002, 17-year-old 
Jessica Santillan died after receiving organs from a donor with an 
incompatible blood type. I would like to take this opportunity to 
express my heartfelt condolences to Jessica's family and friends.
  While it is critical to understand how mistakes led to Jessica's 
death, and how they can be avoided in the future, this tragic incident 
should not diminish our commitment to organ donation--a procedure that 
saves thousand of lives each year, and was in fact Jessica's only 
chance for survival. Instead, we should make a commitment to increasing 
our donation rates and saving even more lives.
  Today, I am pleased to reintroduce legislation with Senator Bill 
Frist to do just that. The Organ Donation and Recovery Improvement Act, 
which Senator Frist and I originally introduced last Congress, will 
bring positive attention to this critical public health issue by 
increasing resources and coordinating efforts to improve organ donation 
and recovery. I am proud to be working with my friend and colleague, 
Senator Frist, whose leadership and professional experience as a heart 
and lung transplant surgeon has been critical in making this issue a 
priority.
  At this very moment, more than 80,000 people are waiting for an organ 
transplant, and one person is added to this list every thirteen 
minutes. This list has increased from 19,095 people a decade ago. 
Unfortunately, the discrepancy between the need and the number of 
available organs is growing exponentially. From 1999 to 2000, 
transplant waiting lists grew by 10.2 percent, while the total increase 
in donations grew by 5.3 percent. Tragically, in 2000, approximately 
5,500 wait-listed patients died waiting for an organ.
  Undoubtedly, the task before our nation in caring for these patients 
seems daunting. However, each person who makes the decision to donate 
can save as many as three lives. None of us wants to imagine the 
anguish of watching a family member or a friend wait for an organ 
transplant hoping that their name reaches the top of the list before 
their damaged organ fails or having to bear the emotional, physical, or 
financial costs of undergoing a transplant procedure. For those that 
do, and for all of those that will, we must improve and strengthen our 
systems of organ donation and recovery. The legislation that Senator 
Frist and I are introducing today represents a significant step towards 
this goal. It would establish a task force to evaluate and improve 
federal efforts relating to organ donation and transplantation 
research, and would also authorize $3 million in fiscal year 2004 and 
such sums as may be necessary in fiscal years 2005 through 2008 for 
grants to Organ Procurement Organizations to coordinate donation 
activities between hospitals.
  A vital part of increasing donations lies in education and public 
awareness initiatives. This legislation would authorize $5 million in 
fiscal year 2004 and such sums as may be necessary in fiscal years 2005 
through 2008 to educate the public about issues surrounding organ 
donation, as well as train health care providers and other appropriate 
professionals in the best methods to use when approaching possible 
donors and their families. This funding could also be used for other 
demonstration projects to increase organ donation and recovery rates. 
In addition, an equal amount is authorized to expand the Agency for 
Health Care Research and Quality's authority to improve organ donation 
practices.
  We must also work to remove the barriers that stand in a donor's way 
as he or she seeks to help another person continue life. Our bill would 
seek to expand living donation by authorizing $5 million in fiscal year 
2004 and such sums as may be necessary in fiscal years 2005 through 
2008 for the reimbursement of related expenses incurred by the donor. 
In addition, this legislation requests an Institute of Medicine report 
on living donation practices and potential long-term health risks.
  Finally, we must work to improve the science of donation and 
recovery, and address legal issues relating to donation, including 
consent. More than 20 states currently have registries that may prove 
indispensable in ensuring that we honor a donor's wishes. This bill 
would establish an advisory committee to study the benefits, and 
potential shortcomings, of these arrangements and work to create a 
national sense of urgency that matches the national need for donors.
  I would like to recognize the invaluable support and guidance we 
received in drafting this bill from the American Society of 
Transplantation, the American Liver Foundation, the Patient Access to 
Transplantation Coalition, the North American Transplant Coordinators 
Organization, and the National Kidney Foundation. I would be remiss not 
to also mention the Association of Organ Procurement Organizations, 
whose members nationwide have worked so tirelessly to bridge the gap 
between the immense need for and the inadequate supply of donated 
organs. In my home state of Connecticut, we are well-served by the 
tremendous work of the Northeast Organ Procurement Organization and the 
New England Organ Bank.
  Finally, I look forward to working with my colleagues, including 
Senator Kennedy, Senator Gregg, and Senator Durbin, whose commitment to 
this issue has been unparalleled. I urge Congress to take swift action 
on this bipartisan legislation aimed at increasing organ donation and 
saving lives.

                          ____________________