Overview
Organ transplant waitlist mortality rates have been prevalent in recent years due to decreasing rates of organ donation combined with an increasing number of patients on the waiting list (Bratton, Chavin, & Baliga, 2011). In order to ensure that scarce organs are made available to the patients in most need, the United Network for Organ Sharing (UNOS) regulates the allocation of organs through an extensive organ matching process. UNOS is a private, nonprofit organization contracted by the United States’ Department of Health and Human Services to serve as an independent entity in the allocation of donor organs (Burr & Shah, 2010). When a donor organ becomes available, UNOS uses medical data from the donor as well as the potential candidates to generate a “rank-order list of candidates to be offered each organ” (UNOS, 2017). Candidates who are ranked at the top of the list are “in most urgent need of the transplant and/or the most likely to have the best chance of survival if transplanted” (UNOS, 2017). To receive a donor organ, potential candidates on the waiting list are screened for compatibility with the donor based on blood type, height, weight, and other medical factors (UNOS, 2017). Although the criteria change based on the organ, these are the basic medical factors taken into consideration before allocation occurs (UNOS, 2017). Since organs must also be transplanted within a limited time frame, geography and a recipient’s distance from the donor hospital are taken into consideration as well (UNOS, 2017). UNOS also specifies that only medical and logistical factors are considered and “personal or social characteristics such as celebrity status, income, or insurance coverage play no role in transplant priority” (UNOS, 2017).
Although UNOS adheres to a thorough process in order to ensure organs are allocated fairly and efficiently, all potential recipients do not have the same access to donor organs (Burr & Shah, 2010). For example, when comparing a white liver transplant patient in Massachusetts to one in Alabama, statistics from 2004 show median wait times of 1212 and 76 days, respectively (Burr & Shah, 2010). In addition to these geographical disparities, racial minorities have been found to suffer from not only limited access to transplantation but also to “suffer disproportionately from conditions which predispose to organ failure” (Bratton et al., 2011, p. 243). Contrastingly, patients who may have better access to transportation or other resources may be listed on multiple waiting lists, increasing their chances to receive an organ (UNOS, 2017). For example, referring back to the 2004 liver transplant waiting times, the patient from Massachusetts may be placed on the list to be eligible to receive a liver in an Alabama hospital as well. The patients with the financial means to travel elsewhere to receive an organ, should one become available, have an advantage, as their waiting time may be shortened.
The above charts indicate the number of candidates on waiting lists for specific organs in California and Tennessee. The data here illustrate geographic advantages for transplant recipients, as California has over 20, 000 patients waiting to be matched while Tennessee has a little over 2, 000. Similar to the observations made by Burr and Shah in Massachusetts and Alabama, the candidates placed on the list in Tennessee may have a better chance of receiving an organ than a candidate in California. (United Network for Organ Sharing)
Controversies/Perspectives
Policies dictating organ allocation are a contentious issue due to the statistics above that indicate disparities in waiting times. When discussing “Justice in Organ Allocation”, Rosamond Rhodes (2006), a professor of bioethics, criticizes UNOS’s policies for being unjust and giving “priority to extraneous concerns and irrelevant differences and thereby giv[ing] people in relatively similar situations inequitable treatment” (p. 168). Waiting time disparities are evident among transplant clinics within states as well, further exhibiting how patients in similar situations may experience different outcomes due to their physical location (Rhodes, 2006). As previously stated, however, a potential organ recipient may be evaluated at more than one transplant center in the country, putting themselves on multiple lists to increase their chances of ultimately receiving an organ (UNOS, 2017). This is what Steve Jobs opted to do when he needed a liver transplant in 2009 (Hainer, 2009). As the graphs above show, significantly more patients are waiting for livers in California than in Tennessee. In an effort to maximize his chances of receiving a liver, Jobs was able to place himself on the waiting list in Tennessee, as the only requirement to be placed on multiple lists is to have the capacity to travel and be present if an organ becomes available in that region (Hainer, 2009). With Jobs’ resources, this was a feasible option for him, and ultimately, he was able to receive a liver transplant in Tennessee (Hainer, 2009). Most patients in the United States do not have access to such resources, and if they are unable to access immediate transportation or relocate, they are limited to the organs available to them in their region.
Racial disparities are also heavily present among transplant recipients, as these populations lack proper access to transplantation (Bratton et al., 2011). Minority communities also have disproportionately high rates of obesity, hypertension, diabetes, and end-stage renal disease, predisposing them to higher risk of organ failure (Bratton et al., 2011). In a study by Siminoff, Burant, and Ibrahim (2006), the authors highlight that African Americans needing a kidney transplant had an average wait time of 1, 335 days while Caucasians had an average wait time of 734 days. Further statistics also show that only a third of African Americans plan to donate their organs, in contrast to more than half of Caucasian respondents (Siminoff et al., 2006). Bratton et al. (2011) identified some of these barriers to donation as decreased awareness of transplantation, distrust of the medical community, and fear of racism. With an already low number of donor organs, reluctance to donate by ethnic minorities further contributes to the issue of limited resources and limited access to transplantation.
The two charts above signify which ethnicities composed the transplant waiting list in 2017 and which ethnicities received transplants in 2016. Besides Caucasians, all other ethnicities have a larger percentage waiting for transplants than the percentage that ultimately receives the organs. (U.S. Department of Health and Human Services)
Politics of Health
The discussion regarding disparities in organ transplants connects back to the politics of health through the concepts of sympathy and exclusion as well as racialization. Hoffman (2006) discusses the ideas of sympathy and exclusion in reference to healthcare access for undocumented immigrants, but her statement that “access to health care in the United States rests on a basis of categorization and exclusion” (p. 238) may be applicable to disparities in transplant waiting times. In this case, the geographically and financially disadvantaged are excluded from access to the full range of potential donor matches. Hoffman (2006) also outlines the case of Jesica Santillan and explains how sympathy played a role in Santillan ultimately receiving her transplants. This brings forth the discussion of how to determine who is deserving when resources are as scarce as human organs are. Although policies are set in place to help the patients who are in the most medical need and who have a high likelihood of transplant success, statistics show that patients with greater social and financial resources are able to find loopholes in the system to gain an advantage over those who may not be as resourceful.
In addition to socioeconomic disparities, ethnic minorities face biological disparities as well; however, in spite of the predisposed biological risks of organ failure, minority transplant recipients face even greater barriers (Bratton et al., 2011). Although there is a lack of adequate organs for all those in need, the significantly higher waiting times for African Americans awaiting kidney transplants illustrates the idea of racialization. Wolf-Meyer (2015) addresses racialization by arguing that the “white heteronormative subject” (p. 446) is considered standard and to which other subjects are compared. Although research has shown minority populations are at higher risk for organ failure due to predisposed health conditions, no policies have been made to reflect these statistics that address biological differences. The lack of acknowledgment of these statistics reinforce Wolf-Meyer’s (2015) point that white bodies “exemplify social and cultural norms of biology and behavior” (p. 446). Organs are scarce, but in addition to the socioeconomic disparities faced by many Americans, ethnic minorities are left to face unaddressed biological disadvantages as well.
References
Bratton, C., Chavin, K., & Baliga, P. (2011). Racial disparities in organ donation and why. Current Opinion in Organ Transplantation, 16:243-249. doi: 10.1097/MOT.0b013e3283447b1c
Burr, A. T., & Shah, S. A. (2010). Disparities in organ allocation and access to liver transplantation in the USA. Expert Review of Gastroenterology & Hepatology, 4(2), 133-40. doi:http://dx.doi.org/10.1586/egh.10.10
Hainer, R. (2009, June 24). Did Steve Jobs’ money buy him a faster liver transplant? CNN. Retrieved from http://www.cnn.com/2009/HEALTH/06/24/liver.transplant.priority.lists/
Hoffman, Beatrix. (2006). Sympathy and Exclusion. In K. Wailoo, J. Livingston, & P. Guarnaccia (Eds.), A Death Retold: Jessica Santillan, the Bungled Transplant, and Paradoxes of Medical Citizenship (237-254). Chapel Hill: The University of North Carolina Press.
Rhodes, Rosamond. (2006). Justice in Organ Allocation. In K. Wailoo, J. Livingston, & P. Guarnaccia (Eds.), A Death Retold: Jessica Santillan, the Bungled Transplant, and Paradoxes of Medical Citizenship (158-179). Chapel Hill: The University of North Carolina Press.
United Network for Organ Sharing. (2017). Frequently Asked Questions about Multiple Listing and Waiting Time Transfer. Retrieved from https://unos.org/wp-content/uploads/unos/Multiple_Listing.pdf
United Network for Organ Sharing. (2017). Transplantation. Retrieved from https://unos.org/transplantation/
United Network for Organ Sharing. (2017) Waiting List Candidates by Organ Type – California. UNOS. Retrieved from https://unos.org/data/transplant-trends/#waitlists_by_organ+state+California
United Network for Organ Sharing. (2017) Waiting List Candidates by Organ Type – Tennessee. UNOS. Retrieved from https://unos.org/data/transplant-trends/#waitlists_by_organ+state+Tennessee
U.S. Department of Health and Human Services. (2017). Organ Donation Statistics. Organdonor.gov. Retrieved from https://www.organdonor.gov/statistics-stories/statistics.html
Wolf-Meyer, Matthew. (2015). Biomedicine, the whiteness of sleep, and the wages of spatiotemporal normativity in the United States. American Ethnologist, 42: 446-448. doi: 10.1111/amet.12140
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