Realizing the Promise of Equity in the Organ Transplantation System (2022) / Chapter Skim
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1 Introduction and Study Context
1 Introduction and Study Context
Pages 19-34
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From page 19... ...
Over the past seven decades, more than 875,000 patients with organ failure have been able to live better and longer lives with transplanted organs,1 about 700,000 of which came from deceased donors while the rest -- almost all kidneys -- were provided by living donors, a category that rose rapidly in the 1990s (from 2,123 in 1990, to 5,939 in 2000) .2 At the request of the sponsor, this study and report focus on organ transplants from deceased donors.
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From page 20... ...
not only forbids the giving or receiving of "valuable consideration" for an organ for transplantation but also established a unified, standardized system to oversee and support the procuring and distribution of deceased donor organs for transplantation, to coordinate other aspects of the transplant process, and to gather and analyze data about outcomes. NOTA began the still-ongoing process of creating a national system out of the patchwork of transplant centers and OPOs, which had grown organically in response to local circumstances, along with other professionals involved in patient care, with responsibility to ensure equitable and efficient use of donated organs as a "national resource."3 COMPLEXITY, SCARCITY, AND PUBLIC CONCERNS Organ transplants depend on the generosity of organ donors and their families as well as the successful completion of a highly complex array of specialized tasks performed by numerous individuals and organizations, referred to in this report as the "organ transplantation system" or "transplantation system." The term "system" is somewhat metaphorical since many of the activities involved in obtaining, allocating, and transplanting organs are carried out independently by health care professionals and organizations rather than under the direction or review of a single controlling authority.
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From page 21... ...
The Organ Procurement and Transplantation Network (OPTN) reports that 5,758 patients were removed from the waiting list in 2021 because they died and another 5,371 because they became "too sick to transplant." This means that 11,129 patients -- about 30 a day -- who had been listed for an organ transplant died without receiving one that year.
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22 REALIZING THE PROMISE OF EQUITY IN THE ORGAN TRANSPLANTATION SYSTEM FIGURE 1-1 Transplant patient journey showing each step in the journey as well as the institutions responsible for creating the resources, setting the policies, or providing patients with the services that are relevant to that step. NOTE: OPTN = Organ Procurement and Transplantation Network; OPO = organ procurement organization.
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From page 23... ...
ATTITUDES AND BELIEFS ABOUT ORGAN DONATION AND BOX 1-1 ALLOCATION The 2019 National Survey of Organ Donation Attitudes and Practices presents the percentage of people who agree with various descriptions of the organ transplant system, including the fol lowing that are particularly relevant to the present report. 86.3%: "All people who need an organ transplant should be able to receive a transplant." • (Significant differences in beliefs emerged along racial, ethnic, education, and age categories.)
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From page 24... ...
. The committee will examine the gaps, barriers, and opportunities for improving deceased donor organ procurement, allocation, and organ distribution to waiting recipients at transplant centers with a keen eye towards optimizing the quality and quantity of donated organs available for transplantation -- in a cost effective and efficient, fair and equitable manner consistent with the National Organ Transplant Act and the Final Rule.
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From page 25... ...
to ensure fairness, equity, cost effectiveness and efficiency, and reduce the reported socioeconomic and racial/ethnic disparities in the current organ allocation system; • Challenges with current organ allocation policy development and policy change procedures and processes, including opportunities to update OPTN policies and processes to ensure organ allocation decisions consider the viewpoints of expert OPTN committees; • Challenges involved in modeling proposed organ allocation policy changes and opportunities to improve modeling, including how costs should be factored into the modeling of organ al location policy changes; • Appropriate parameters, factors, and variables that should make up various transplant scoring systems (e.g., CPRA, EPTS, KDPI, LAS, MELD, etc.)
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From page 26... ...
All committee members volunteer their time to serve on a study committee. Areas of expertise represented on the committee included health care system management, bioethics, population health, anthropology, transplant surgery, organ procurement, organ allocation, management science, economics, biostatistics, and law and regulation.
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COMMITTEE APPROACH AND INTERPRETATION OF THE STATEMENT OF TASK This study charge is broad and asks the study committee to address multiple longtime, vexing issues and challenges in organ procurement, allocation, and distribution. While the study charge was limited to procurement, allocation, and distribution of deceased donor organs, some of the committee's recommendations may also affect living donors and living donation policies.
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From page 28... ...
Throughout the course of this study, UNOS, as the OPTN, continued to refine allocation policies governing how deceased donor organs are prioritized among patients on the waiting list as well as other policies related to performance metrics for transplant centers. The committee was mindful that OPOs and UNOS were under scrutiny by Congress12 and others,13 and that some of these issues have become contentious among organ transplantation stakeholders who are tasked with working together.14 Congressional scrutiny largely involves issues that this committee was not charged with addressing, nor constituted to address.
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From page 29... ...
The organ transplantation system may be unable to solve issues of inequity in the larger health care system, but these larger issues cannot be an excuse for those in the organ transplantation system to turn their focus away from the need to provide equitable access to the opportunity for transplantation, as well as equitable allocation of deceased donor organs among those on the waiting list. In fact, an opportunity exists for the organ transplantation system to become an example of how to manifest equity in the delivery of care and allocation of a scarce resource.
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From page 30... ...
Transparency applies at all levels -- transparency to federal regulators, Congress, and the public in the operation of organizations working in donation, procurement, and transplantation as well as transparency between patients seeking access to the waiting list or current transplant candidates and their physicians, specialists, and transplant teams about the transplant process. Transpar ency is also necessary for accountability -- that is, not simply the obligation of the system to pro vide an account of its operations but also to be answerable for any deficiencies or misfeasance.
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WHY IS THIS STUDY NEEDED? The foundation of the organ transplantation system is the gift of organ donation from both living and deceased donors.
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From page 32... ...
The committee focused on three critical areas of variation in system performance that affect the availability of deceased donor organs for those on transplant waiting lists: (1) the procurement of medically complex organs, in particular donation after circulatory determination of death (DCDD)
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From page 33... ...
Underuse of Donated Organs While waiting lists remain long and many listed individuals die while awaiting an organ every day, too many donated organs that are procured and offered to patients at transplant centers are not accepted -- leaving thousands of potentially lifesaving donated organs unused every year. While estimates vary, approximately 20 percent of organs procured from deceased donors are not used (i.e., the organs are not transplanted into individuals on the waiting list)
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From page 34... ...
2022. All-time records again set in 2021 for organ transplants, organ donation from deceased donors.
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