Kidney Transplant Candidates’ Views of the Transplant Allocation System

Faced with a shortage of transplantable kidneys, policy makers have been forced to make difficult decisions about who should receive available organs. Presently, kidneys are distributed on the basis of a point system. Kidney transplant candidates are placed on a waiting list and accumulate points on the basis of waiting time, presensitization status, age (if less than 18 years old), and antigenic similarity to the donor.1 In general, organs are given to the patient in the local area of the donor who has the highest number of points, except when a recipient can be found who is a complete antigen match with the donor. The point system places great emphasis on antigen matching. Patients can receive a maximum of 10 points for antigen matching versus only 1 point for each year they have waited for a kidney (plus up to an additional 1 point for the person who has been waiting the longest).1 Thus, patients with common antigens have a better chance of undergoing transplant than patients with rare ones. This has helped create a situation in which African Americans, who have a disproportionate share of rare antigens, wait twice as long for kidneys as whites.2,3 In addition, fewer than 4% of “complete antigen matches” (those kidney transplants in which a donor and recipient match on all six major HLA antigens) go to African Americans.4 The point system places great emphasis on antigen matching in order to improve the chance that transplanted kidneys will function without being rejected. Nevertheless, critics have argued that the system places too much emphasis on antigen matching given the small clinical benefits it brings.4–8 One year after transplant, 80% of completely matched kidneys are likely to be functioning compared with 74% of partially matched kidneys.5 Defenders of the system argue that because kidneys are scarce everything should be done to increase the chance of transplant success.9 In a previous study, we surveyed members of the general public to see what they felt about trade-offs between antigen matching and waiting time equity.10 We found that a majority of people felt that small differences in transplant outcomes did not justify significant inequities in waiting time, such as those that result from the present system. Although the attitudes of the general public are important, we cannot effectively examine current allocation policies without taking into account the views of the people they affect the most—kidney transplant candidates. In this article, we report on a pilot study exploring kidney transplant candidates’ understanding of and attitudes toward the transplant allocation system. The pilot study is designed to explore (1) kidney transplant candidates’ baseline understanding of and attitudes toward the kidney allocation system; (2) how their attitudes change after receiving information about how antigen matching and waiting time are factored into the system; and (3) how their attitudes change after learning about racial disparities created, in part, by the system’s emphasis on antigen matching. We hypothesized that patients, especially African Americans, would not approve of the emphasis on antigen matching after learning about how it influences racial disparities in waiting times.