Despite the many individual successes of transplantation in the United States, key components of the transplantation system—donor hospitals, organ procurement organizations (OPOs), transplant centers, and the Organ Procurement and Transplantation Network—suffer from significant variations in performance, which often creates an inefficient and inequitable system. An individual’s chance of referral for transplant evaluation, being added to the waiting list, and receiving a transplant varies greatly based on race and ethnicity, gender, geographic location, socioeconomic status, disability status, and immigration status. Given these issues, the U.S. Congress requested that the National Institutes of Health sponsor a National Academies of Sciences, Engineering, and Medicine study to review the fairness, equity, transparency, and cost-effectiveness in the system of procuring, allocating, and distributing deceased donor organs. The resulting analysis emphasizes that a combination of immediate or near-term (1–2 years) corrections and longer-term actions (3–5 years) are needed. Immediate or near-term actions include establishing national performance goals, requiring each OPO to establish a donor care unit, increasing the use of procured organs, modernizing information technology infrastructure and data collection requirements, increasing shared decision making with waiting patients, improving the policy development process, sustaining and expanding quality improvement efforts, removing predialysis waiting time “points” from the kidney allocation system, resolving the use of race in the Kidney Donor Profile Index and other clinical equations, and aligning financial incentives with the goal of equity. Longer-term solutions that should begin immediately include extending regulatory oversight of the organ transplantation system to encompass patients needing transplant but not yet on the waiting list.
While the U.S. deceased donor organ transplantation system has seen significant growth in the number of transplants performed, the number of individuals waiting for a transplant continues to outpace the number of transplants performed. Organ transplantation—the surgical removal of a healthy organ from one deceased or living individual and its placement into another person—has been a lifesaving treatment since its introduction in the mid-twentieth century. In 2021, there were 41,354 transplants performed—an increase of 5.9 percent over 2020, despite the complications of the COVID-19 pandemic (OPTN, 2022).
Receiving an organ transplant can provide significant health benefits for a variety of conditions that result in organ failure. Individuals with kidney, liver, or uterus failure can receive transplants from living donors, but for individuals with heart, lung, pancreas, or intestinal failure, or the failure of an extremity or tissue system, an organ from a deceased donor is usually the only possibility.1 Although living donation is an option, most individuals seeking a kidney, liver, or uterus transplant ultimately receive an organ from a deceased donor. There is a shortage of all types of deceased donor organs. Individuals waiting for a kidney make up approximately 84.7 percent of the total number of candidates on the waiting list for any organ.2 Far fewer individuals are on a waiting list for liver, heart, lung, pancreas, and intestine donor organs. Dialysis is an alternative form of renal replacement therapy for individuals with end-stage kidney disease or kidney failure. Other types of organ failure sometimes have no alternative lifesaving treatments.
Despite the many successes of organ procurement and transplantation in the United States, the components of the system suffer from significant variations in performance, creating an inefficient and inequitable system. An individual’s chance of being referred for a transplant evaluation, being added to the waiting list, and receiving a transplant varies greatly based on race and ethnicity, gender, geographic location, socioeconomic status, disability status, and immigration status (Ahearn et al., 2021; Axelrod et al., 2010; Darden et al., 2021; Harding et al., 2021; Lee and Terrault, 2020; Patzer et al., 2012; Richards et al., 2009). Disparities and inequities in the organ transplantation system are not new and have been a topic of debate and frequent efforts at reform since the United States formalized the national Organ Procurement and Transplantation Network (OPTN) in 1986.
The U.S. Congress requested that the National Institutes of Health sponsor this study to examine the fairness, equity, transparency, and cost-effectiveness of the deceased donor organ procurement, allocation, and distribution system. See Box S-1 for the Statement of Task.3 To accomplish the task, the National Academies of Sciences, Engineering, and Medicine (the National Academies) empaneled a committee of 17 members with expertise in the areas of bioethics, health equity, biostatistics, economics, law and regulation, transplant surgery, nephrology, epidemiology, organ procurement, management science, and quality improvement (see Appendix C for biographical sketches of the committee members and staff).
1 Although uncommon, in some cases it may be possible to receive a portion of a lung, pancreas, or intestine from a living donor. See https://www.organdonor.gov/learn/process/living-donation (accessed January 31, 2022).
2 As of February 3, 2022, there were 90,315 candidates waiting for a kidney transplant out of a total of 106,616 candidates waiting for any type of organ transplant. 90,135/106,616 = 84.7 percent. See https://optn.transplant.hrsa.gov/data/view-data-reports/national-data (accessed February 3, 2022).
3 The study task did not include a focus on living donors and living donation, nor issues around tissue procurement and transplantation. The committee’s work includes heart, lung, liver, kidney, kidney–pancreas, intestinal, vascular composite allotransplantations, dual organ, and multiorgan transplants. However, many of the committee’s conclusions and recommendations focus on issues related to kidney transplant access given the large size of the kidney waiting list and the significant opportunity and promise for lives saved. Many of the committee’s recommendations apply to all organs or, if kidneys are mentioned as a primary area for action, other organs are not excluded.
CHALLENGES AND OPPORTUNITIES
To address its broad charge, the committee focused on three key issues and areas of opportunity for improvement in deceased donor organ procurement, allocation, and distribution—challenges of inequity in access, variation and inefficiency in system performance, and underuse of donated organs.
Challenges of Inequity in Access
Getting onto the waiting list—being listed—is metaphorically the gateway that must open for one to have access to receiving a transplant of a deceased donor organ. The point at which an individual joins the waiting list is also the time that federal oversight traditionally has begun for the policies and processes that govern prioritization of waiting list patients, allocation of organs, and posttransplant outcomes. For many persons who would benefit from organ transplantation—and particularly racial and ethnic minorities, individuals of lower socioeconomic status, those who live in rural areas, or undocumented immigrants or individuals with an intellectual disability—this gate may be especially hard to open.
It is well established that inequities arise in access to referrals, evaluation, and the waiting list for organ transplant, yet little is known where along the trajectory in that process disparities are most likely to arise, especially for vulnerable populations. The purview of the OPTN begins when an individual patient is added to the waiting list for a deceased donor organ. The committee finds that this gap in oversight presents a significant challenge to ensuring fairness and equity in the organ transplantation system and that federal oversight should expand to begin when an individual is diagnosed with end-stage organ failure and include the steps involved in identifying patients as needing a transplant before patients are added to the waiting list.
Certain groups of patients (e.g., patients of color, lower socioeconomic status, female gender) receive organ transplants at a disproportionately lower rate and after longer waiting times than other patients with comparable medical need (Ahearn et al., 2021; Darden et al., 2021; Patzer et al., 2012). Illustrative of some disparities, black persons are three times more likely to develop kidney failure than whites in the United States but are significantly less likely to receive lifesaving kidney transplants (Saran et al., 2017). Black candidates enter the kidney transplant waiting list with double the length of dialysis time than white candi-
dates and consequently have increased medical urgency as evidenced by their increased risk of mortality without transplantation. Under the current kidney allocation system, which prioritizes how long an individual has been on the waiting list, putting many individuals at a disadvantage, the disparity will persist.
The committee concludes that the current organ transplantation system is demonstrably inequitable. Based on available information, the committee does not find justifiable reasons for the demonstrable disparities between organ transplant rates for persons who would benefit from organ transplants and the burden of disease in many populations. These inequities undermine the trust necessary for the organ transplantation system to function optimally.
Justice, Fairness, Equity, and Transparency—Foundations for a Trustworthy System
Even when policies are premised on all people being treated alike, measurable—in fact, often very large—disparities exist that are not explained by medical differences but rather arise from historical patterns of discrimination. Historical patterns of discrimination are embedded in social institutions (including in health care) and are perpetuated by conscious prejudices as well as unexamined practices.
Justice demands that access to health care be equitable, meaning that persons in equivalent medical circumstances actually receive equivalent medical care, free from irrelevant considerations such as their sex, race, ethnicity, religion, socioeconomic condition, physical and mental capabilities, geographic residence, and other personal attributes. Disparities in the ways that certain historically disadvantaged groups are treated or in the outcomes that the transplantation system produces for them are signals that an injustice exists. To the extent that such disparities are avoidable, an equitable system will take the steps necessary to eliminate them.
Transparency is an instrumental value in shaping public beliefs and attitudes about the trustworthiness of the organ transplantation system. Individual and societal trust in the organ transplantation system depends on health care professionals fulfilling their ethical duties to do good and not to harm, to respect the patients’ autonomy, and to strive for justice and usefulness in organ allocation decisions. Additionally, such trust is contingent on other institutions—the OPOs, the OPTN, and agencies of the federal government—upholding these same values.
Variation and Inefficiency in System Performance
Marked variations in performance exist across the organ transplantation system. In particular, the committee identified five-fold variation among OPOs4 in their procurement of organs from donation after circulatory determination of death (DCDD) organ donors.5 Across transplant centers, the committee found significant variation in the rate at which a center accepts the deceased donor organs offered to individual patients on the waiting list. In both cases, accountability currently does not exist for OPO performance in procuring DCDD organs and transplant center willingness to accept organs suitable for a patient. Each source of significant variation decreases the reliability and functionality of the system and directly
4 OPOs are not-for-profit organizations responsible for identifying potential organ donors, working directly with a decedent’s family about potential donation, receiving authorization for organ donation, obtaining organs from donors, and properly preserving these organs for quick delivery to a suitable recipient waiting for a transplant.
5 DCDD organs are one type of medically complex organ.
affects equity in patient care. If an individual happens to join the waiting list at a transplant center with poor organ offer acceptance rates, or in an area where the OPO does not procure as many donated organs as they could, that individual is less likely to receive a transplant.
While the behaviors of OPOs and transplant centers can vary significantly across the United States, the policy development process governing how deceased donor organs are allocated to individuals on the waiting list is the purview of the OPTN. The OPTN policy-making process for organ allocation includes extensive committee reviews that aim to involve all stakeholders, but the nature of the reviews contributes to variability in the policy development processes and a general slowness in policy development and implementation.
Underuse of Procured Organs
The committee also identified the significant issue of organ nonuse—that is, organs procured for transplantation but not transplanted. While the waiting list remains long and individuals waiting for an organ transplant die every day, too many donated organs are being procured and not used. The proportion of kidneys from deceased donors that were recovered for transplant but ultimately not transplanted in 2019 was approximately 20 percent (Israni et al., 2021), with a projected 2021 kidney nonuse rate of 23 percent (see Figure 6-4 in Chapter 6). The rate at which kidneys go unused in the United States is much higher than other developed countries (Mohan et al., 2018; Stewart et al., 2017). For example, the U.S. rate of nonuse for procured organs is nearly double the rate in France (Aubert et al., 2019). Approximately 62 percent of kidneys not used in the United States would likely have been successfully transplanted in France (Aubert et al., 2019).
The committee developed each recommendation in this report with the interests of patients in mind and through the lens of equity (see Box S-2 for the list of recommendations). Based on the committee’s review of the evidence and reflection on the experience of individual committee members, there is an opportunity to refocus the organ transplantation system around the patient experience of needing and seeking an organ transplant. The committee concluded that even at its best, the organ transplantation system is not accountable to all patients who need an organ transplant. A shift is needed toward policies that engender accountability to all patients in need of a transplant, whether they are on the waiting list yet or not, as well as organ donors and their families who donate the gift of life.
In crafting the recommendations in this report the committee often calls on the U.S. Department of Health and Human Services (HHS) to update the OPTN contract to require or hold the OPTN accountable for taking specific actions. The committee realizes that the OPTN contract will come up for bid again in 2023 and that some elements of the committee’s recommendations might be best incorporated in the HHS request for proposals in 2023, while others can be immediately embedded into the priorities for the OPTN.
While all of the committee’s recommendations include a focus on increasing equity, including many related to system-level improvements, the following five recommendations stand out as being squarely focused on equity:
Recommendation 3:6 Achieve equity in the U.S. organ transplantation system in the next 5 years.
Under the direction and oversight of Congress, HHS should be held accountable for achieving equity in the transplantation system in the next 5 years. Within 1 to 2 years, HHS should identify and publish a strategy with specific proposed requirements, regulations, payment structures, and other changes for elimination of disparities. Elements of the strategy should include expanding oversight and data collection, aligning providers with the goal of equity, shared decision making with patients and public education, and elevating voices of those facing disparities.
Expanding Oversight and Data Collection
- HHS should extend its regulatory oversight of the organ transplantation system beginning, at least, at the time a patient reaches end-stage organ failure and extending beyond 1 year posttransplant.
6 Recommendations are numbered according to their appearance in the full report.
- HHS should update the OPTN contract to require the collection of disaggregated data by race and ethnicity, gender/sex, age, as well as language and the creation of new measures of inequity in the transplantation system.
Aligning Providers with the Goal of Equity
- The Centers for Medicare & Medicaid Services (CMS) should adopt payment policies that incentivize all providers—from primary and specialty care of patients with organ failure to referral for transplant, from care while awaiting a transplant to long-term posttransplant care—to improve equity in access to care and outcomes for patients.
Shared Decision Making with Patients and Public Education
- HHS should develop, implement, and evaluate rigorous approaches for transplant teams to communicate routinely with (1) potential transplant recipients about their status and remaining steps in the process of transplant evaluation; (2) wait-listed candidates about organs offered to them, including information about the benefits, risks, and alternatives to accepting different types of organs to facilitate shared decision making about whether to accept the organ; and (3) wait-listed candidates about the number of organs offered and declined.
- HHS should develop, implement, and evaluate rigorous approaches for routinely educating the public about the benefits, risks, and alternatives to organ transplantation as a treatment option for end-stage organ disease or for those needing transplantation of tissue or a functional unit.
- HHS should conduct ongoing culturally targeted public education campaigns to convey the need for organ donation to save lives, to eliminate misconceptions about organ donation and transplantation, and to increase the trustworthiness of the transplantation system.
Elevating Voices of Those Facing Disparities
- The OPTN should be required to ensure that all populations facing disparities, including persons with disabilities, are represented in the transplant policy development process.
- HHS should require and support work with OPOs to increase the diversity of their workforce to better meet the needs of donor families.
Recommendation 4: Accelerate finalizing continuous distribution allocation frameworks for all organs.
The OPTN should accelerate the development of the continuous distribution framework for all organ types with full implementation by December 31, 2024. The OPTN should set organ-specific upper bounds on the weight of “distance to the donor hospital” in the continuous distribution equation. The weights should be proportional to the effect of increased organ travel on posttransplant survival. The OPTN should regularly reevaluate the weight assigned to this factor as advances in normothermic preservation permit travel time to be extended without impairing outcomes. The OPTN should annually evaluate the effects of the continuous distribution policy and adjust the equations for organs that are not moving toward the goals set by HHS for improved equity, organ use, and patient outcomes, as well as steady or reduced costs.
Recommendation 5: Eliminate predialysis waiting time points from the kidney allocation system.
To reduce racial and ethnic disparities in the application of kidney transplant allocation policies, the OPTN should discontinue the use of predialysis waiting time credit,
or points, in the current kidney allocation system, leaving only the date that the patient began regularly administered dialysis as an end-stage kidney disease patient as the basis for an individual to accumulate points based on waiting time. While this committee is not recommending that access to the deceased donor kidney waiting list be limited to only those who have started dialysis, the committee is recommending that predialysis waiting time should be discontinued as a basis for accumulating waiting time points. This change would ultimately save more lives in a fairer and more equitable manner by eliminating the current preferential access to deceased donor kidneys for individuals able to gain timely access to referral for transplant and the transplant waiting list. Considerations may be necessary for pediatric transplant candidates, multiorgan transplant candidates, prior transplant recipients, and those currently listed with predialysis waiting time. The OPTN should closely monitor any unintended consequences of removing predialysis waiting time points. To avoid manipulating the system by earlier dialysis initiation, OPTN policy should include penalties for providers who engage in the premature initiation of dialysis.
Recommendation 6: Study opportunities to improve equity and use of organs in allocation systems.
HHS should require the OPTN to study the effect of changing the kidney allocation system to include a measure of survival benefit and dialysis waiting time as a method of improving access to transplant for all patients without unintended consequences for patients with disabilities, socioeconomically disadvantaged populations, and racially diverse patients. Additional endpoints for study should include patient-centered and patient-identified metrics as well as waiting list mortality, organ nonuse rates, and overall survival from the time of entry onto the waiting list.
Recommendation 7: Increase equity in organ allocation algorithms.
HHS should quickly resolve areas of inequity in current organ allocation algorithms. The committee identified numerous aspects of the current organ allocation algorithms that require revision, further study, or immediate implementation. The committee recommends that HHS do the following:
- Require the OPTN to update its prediction models (e.g., KDPI, EPTS, and MELD) using the most recent data no less frequently than every 5 years. During this time, the models themselves should be reconsidered by adding or removing predictors that will either improve predictive accuracy or increase equity (e.g., adding serum sodium to the MELD score, replacing race with scientifically valid biologic predictors in the KDPI). Statistical aspects of the prediction models themselves should also be reviewed to ensure that the best performance possible is achieved and that they are properly validated using data not used to derive the prediction models.
- Modify the MELD scoring system for liver allocation and prioritization or establish an alternative overall prioritization scheme to include a modifier based on body size or muscle mass to overcome the demonstrated disparities observed for patients of smaller size.
- Immediately implement the recommendations of the National Kidney Foundation and American Society of Nephrology joint task force to use the revised equation, which eliminates race, in calculating estimated glomerular filtration rate for all individuals and to use the revised equation for high-risk individuals that incorporates a blood test for cystatin C along with serum creatinine.
- Require the OPTN to ensure that all laboratories in the transplantation system become capable of conducting validated cystatin C tests within 12 months.
- Resolve the use of race in KDPI and other clinical equations. Within 12 months HHS should make a decision on the continued use of race in KDPI and how best to eliminate race from KDPI and other clinical equations used in organ allocation and access.
- Continue to gather data on factors that may result in disparities in access to, and outcomes of, organ transplantation (e.g., socioeconomic status, place of residence, access to health care, race and ethnicity, presence in patient or family of stressors caused by racism) and use such data to determine whether faster progression to end-stage kidney disease is experienced by patients with any particular factor or combination of factors, and if so whether this evidence should be used to establish a new threshold for listing on the transplant list and for allocation of an organ for transplantation.
Improving System Performance to Increase Reliability, Predictability, and Trustworthiness
The current organ transplantation system is unduly fragmented and inefficient. The system’s component parts—physicians caring for patients with organ failure, donor hospitals, OPOs, the OPTN, transplant centers, the Scientific Registry of Transplant Recipients, CMS, and other payers, among others—do not operate as a fully integrated system. Likewise, the entities with oversight responsibilities each oversee particular components, but none monitors the performance of the system as a whole in producing predictable, consistent, and equitable results. The organ transplantation system could save additional lives and be more equitable if its component parts functioned in a more cohesive fashion and were overseen by a single entity, or by several entities operating in a coordinated fashion with common goals and unified policies and processes. Such alignment of all components and oversight responsibilities would allow the public and Congress to ascertain whether the system is fairly and efficiently maximizing the benefits provided by organ donation and transplantation. The committee offered six recommendations focused on system-level improvements.
- Oversight by a critical care physician;
- Ability to conduct some in-house imaging and diagnostics of donors;
- Ability to conduct organ rehabilitation and therapy;
- Ability to conduct donor intervention research; and
- Reasonable distance to an airport.
- CMS should adjust current reimbursement structures that create disincentives that dampen the willingness of some transplant centers to transfer donors to an OPO DCU. Transplant centers should not be disadvantaged financially by allowing a donor to be transferred to a DCU for donor management and organ recovery. Similarly, transplant centers should not excessively gain from transferring and managing already deceased donors from another hospital for the sole purpose of organ procurement.
- HHS should require hospitals to smooth surgical scheduling so that organ donation surgical procedures for DCDD donors and donors who cannot be transferred to a DCU can take place in a timely manner all seven days of the week.
Recommendation 12: Create a dashboard of standardized metrics to track performance and evaluate results in the U.S. organ transplantation system.
- Establish standardized data collection requirements, with an emphasis on timeliness of reporting, for donor hospitals, OPOs, and transplant centers. All data points collected should reflect demographics—that is, the most updated way of capturing race, ethnicity, and language, as well as socioeconomic factors, disability status, a social deprivation index based on geography, and other factors to better document, understand, reduce, and eventually eliminate disparities.
- Require collaboration among the federal agencies with oversight of the transplantation system on data collection to ensure relevant, accurate, and timely data are available about the transplantation system.
- Collaborate with an organization like the National Quality Forum to develop consensus measures and measure specifications to evaluate and improve the performance of the organ transplantation system in a standardized way. Recommended data points needed from donor hospitals, OPOs, referring organizations, and transplant centers are detailed in Figure 7-1.
- Create a publicly available dashboard of standardized metrics to provide a complete human-centered picture of the patient experience—from patient referral for transplant evaluation, to time on the waiting list, to posttransplant quality of life—managed by the Scientific Registry of Transplant Recipients (SRTR) or a similar entity.
- data. Nudges should be sent to both high and low performers. For example, OPOs with a low percentage of DCDD donors in their deceased donor organ pool could receive a special message or brief report calling attention to their current performance in comparison to other OPOs.
Underuse of Procured Organs
While waiting lists remain long and every day many listed individuals die while awaiting an organ, 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. Approximately 20 percent of kidneys procured from deceased donors are not used (i.e., the organs are procured for transplantation but not transplanted into individuals on the waiting list) (Israni et al., 2021). The committee agreed that this issue of unused organs represents a critical need for system improvement. Evidence indicates that many, if not a large majority, of unused organs could be successfully transplanted and benefit patients. Two facets of the organ transplantation system are in tension. On the one hand, priority for individuals on each organ waiting list is based on formal, publicly announced policies, and organs are allocated by match-run algorithms. On the other hand, a patient’s access to an organ offered depends on how the transplant professionals in the program caring for the patient exercise the discretion that the system gives them regarding when to accept or reject an organ for transplantation. This divergence—which is not transparent either to the general public or even to all patients on the waiting list—has implications for equitable treatment of all patients, for adherence to the ethical principles of autonomy and beneficence, and for trust in the system. The committee offered three recommendations focused on increasing use of organs procured from deceased donors:
- Develop evidence-based standards for organ quality assessment to be used by all OPOs prior to organ allocation. The standardized requirements for organ quality assessments should carefully consider the value of biopsies as it has been repeatedly shown that biopsy results deter organ acceptance, often inappropriately.
- Develop clear guidelines for transplant centers to request any additional organ quality testing beyond the standardized requirements.
Recommendation 10: Increase transparency and accountability for organ offer declines and prioritize patient engagement in decisions regarding organ offers.
HHS should update the OPTN contract to require increased transparency around organ offer declines. The updated OPTN contract should do the following:
- Require transplant centers to share with a patient and their family the number and context of organ offer declines for that individual on the waiting list during a defined period (e.g., every 3 to 6 months).
- Require the collection of more reliable, specific, and patient-centered data on reasons organ offers were declined through improvements in refusal codes. For example, require transplant centers to provide additional justification for declining an offered kidney when survival benefit of the transplant is greater than staying on dialysis.
- Require investigation of approaches for shared decision making between patients and transplant teams in the organ offer process and implementation of models proven to be most useful and desirable.
HHS should update the OPTN contract to require transplant center accountability for patient engagement and partnership between transplant center professionals and patients in deciding whether to accept or reject an offered organ. The updated OPTN contract should require
- Close monitoring of any new transplant center performance metrics to ensure the desired outcomes are achieved and unintended consequences are avoided;
- Nudges in the form of reports showing a transplant center’s decisions regarding offered organs, as well as comparisons to other transplant centers, to be proactively developed from SRTR data and shared with individual transplant centers on a monthly basis; and
- Transplant programs to document shared decision making that includes a discussion of survival benefit, relative to staying on the waiting list or dialysis, before deciding to accept or reject an offered deceased donor organ.
Recommendation 14: Align reimbursement and programs with desired behaviors and outcomes.
CMS should align payment and other policies to meet the national performance goals for the organ transplantation system (see Recommendation 1). Within 2 years, CMS should
- Continue and expand funding, as needed, for the current quality improvement initiative aimed at reducing the kidney nonuse rate, and pursuing simultaneous expansion of kidney donation by spreading the best practices of transplant centers and OPOs.
Sustain and expand current work in the End-Stage Renal Disease (ESRD) program to
- refer more eligible patients for transplant,
- help referred patients to get both evaluated and listed by transplant centers,
- assist patients in fully understanding and engaging with transplant centers when organs that are offered are declined on their behalf, and
- work with Congress to update and increase the existing and outdated dialysis withholding payment to fund ESRD quality improvement activities.
- Sustain and expand model tests and other payment policies to increase reimbursement for nephrologists and dialysis centers to educate and refer patients for transplant evaluation.
- Increase reimbursement for referral for transplant evaluation for all organ types, and in the case of kidney transplant, even before dialysis begins.
- Update the CMS Interpretive Guidelines to reflect current practices and promote a collaborative relationship between the donor hospital and OPO, and institute measurable reporting mechanisms for donor hospital data. Address this systematically as part of both CMS hospital surveys and surveys by deemed organizations such as The Joint Commission.
- Explore financial incentives and make changes to Interpretive Guidelines to make hospitals accountable for smoothing surgical scheduling to ensure the capacity to recover and transplant donated organs seven days a week.
HHS, CMS, and other payers should consider new opportunities to increase the use of organs. HHS, CMS, and other payers should take the following steps:
- Increase payment for improving the procurement and transplantation of all types of organs, as CMS did in the 2021 Inpatient Prospective Payment System Final Rule when it created new Diagnosis Related Groups with higher payments for kidney transplants that required a higher level of medical care.
- Incentivize OPOs and transplant centers to learn from the organizations and centers that already make extensive use of medically complex organs, and actively work to spread the practices for obtaining and transplanting these organs that have proven to be most successful and cost effective.
- Within the next 2 years, the CMS Innovation Center should design and implement one or more model tests to assess the effects of additional increased payments to address the added costs of rehabilitating and using more organs that are medically complex and increasing equitable access to a broader pool of patients. These model tests should also measure the potential improvement in health care quality and financial savings of providing transplants more quickly to patients who would otherwise require continued extensive medical support, such as an artificial organ or hospitalization.
Ahearn, P., K. L. Johansen, J. C. Tan, C. E. McCulloch, B. A. Grimes, and E. Ku. 2021. Sex disparity in deceased-donor kidney transplant access by cause of kidney disease. Clinical Journal of the American Society of Nephrology 16(2):241-250.
Aubert, O., P. P. Reese, B. Audry, Y. Bouatou, M. Raynaud, D. Viglietti, C. Legendre, D. Glotz, J. P. Empana, X. Jouven, C. Lefaucheur, C. Jacquelinet, and A. Loupy. 2019. Disparities in acceptance of deceased donor kidneys between the United States and France and estimated effects of increased US acceptance. JAMA Internal Medicine 179(10):1365-1374.
Axelrod, D. A., N. Dzebisashvili, M. A. Schnitzler, P. R. Salvalaggio, D. L. Segev, S. E. Gentry, J. Tuttle-Newhall, and K. L. Lentine. 2010. The interplay of socioeconomic status, distance to center, and interdonor service area travel on kidney transplant access and outcomes. Clinical Journal of the American Society of Nephrology 5(12):2276-2288.
Darden, M., G. Parker, E. Anderson, and J. F. Buell. 2021. Persistent sex disparity in liver transplantation rates. Surgery 169(3):694-699.
Harding, J. L., A. Perez, and R. E. Patzer. 2021. Nonmedical barriers to early steps in kidney transplantation among underrepresented groups in the United States. Current Opinion in Organ Transplantation 26(5):501-507.
Israni, A. K., D. Zaun, J. D. Rosendale, C. Schaffhausen, W. McKinney, and J. J. Snyder. 2021. OPTN/SRTR 2019 annual data report: Deceased organ donors. American Journal of Transplantation 21(S2):567-604.
Lee, B. P., and N. A. Terrault. 2020. Liver transplantation in unauthorized immigrants in the United States. Hepatology 71(5):1802-1812.
Mohan, S., M. C. Chiles, R. E. Patzer, S. O. Pastan, S. A. Husain, D. J. Carpenter, G. K. Dube, R. J. Crew, L. E. Ratner, and D. J. Cohen. 2018. Factors leading to the discard of deceased donor kidneys in the United States. Kidney International 94(1):187-198.
OPTN (Organ Procurement and Transplantation Network). 2022. All-time records again set in 2021 for organ transplants, organ donation from deceased donors. https://optn.transplant.hrsa.gov/news/all-time-records-again-set-in-2021-for-organ-transplants-organ-donation-from-deceased-donors (accessed January 20, 2022).
Patzer, R. E., J. P. Perryman, J. D. Schrager, S. Pastan, S. Amaral, J. A. Gazmararian, M. Klein, N. Kutner, and W. M. McClellan. 2012. The role of race and poverty on steps to kidney transplantation in the southeastern United States. American Journal of Transplantation 12(2):358-368.
Richards, C. T., L. M. Crawley, and D. Magnus. 2009. Use of neurodevelopmental delay in pediatric solid organ transplant listing decisions: Inconsistencies in standards across major pediatric transplant centers. Pediatric Transplantation 13(7):843-850.
Saran, R., B. Robinson, K. C. Abbott, L. Y. Agodoa, P. Albertus, J. Ayanian, R. Balkrishnan, J. Bragg-Gresham, J. Cao, J. L. Chen, E. Cope, S. Dharmarajan, X. Dietrich, A. Eckard, P. W. Eggers, C. Gaber, D. Gillen, D. Gipson, H. Gu, S. M. Hailpern, Y. N. Hall, Y. Han, K. He, H. Hebert, M. Helmuth, W. Herman, M. Heung, D. Hutton, S. J. Jacobsen, N. Ji, Y. Jin, K. Kalantar-Zadeh, A. Kapke, R. Katz, C. P. Kovesdy, V. Kurtz, D. Lavalee, Y. Li, Y. Lu, K. McCullough, M. Z. Molnar, M. Montez-Rath, H. Morgenstern, Q. Mu, P. Mukhopadhyay, B. Nallamothu, D. V. Nguyen, K. C. Norris, A. M. O’Hare, Y. Obi, J. Pearson, R. Pisoni, B. Plattner, F. K. Port, P. Potukuchi, P. Rao, K. Ratkowiak, V. Ravel, D. Ray, C. M. Rhee, D. E. Schaubel, D. T. Selewski, S. Shaw, J. Shi, M. Shieu, J. J. Sim, P. Song, M. Soohoo, D. Steffick, E. Streja, M. K. Tamura, F. Tentori, A. Tilea, L. Tong, M. Turf, D. Wang, M. Wang, K. Woodside, A. Wyncott, X. Xin, W. Zang, L. Zepel, S. Zhang, H. Zho, R. A. Hirth, and V. Shahinian. 2017. US Renal Data System 2016 annual data report: Epidemiology of kidney disease in the United States. American Journal of Kidney Diseases 69(3 Suppl 1):A7-A8.
Stewart, D. E., V. C. Garcia, J. D. Rosendale, D. K. Klassen, and B. J. Carrico. 2017. Diagnosing the decades-long rise in the deceased donor kidney discard rate in the United States. Transplantation 101(3):575-587.