Department of Health and Human Services 

OFFICE OF 

INSPECTOR GENERAL 

JUNE GIBBS BROWN 

Inspector General 

MAY 1999 

OEI-01-99-00211 

FOSTERING EQUITY IN PATIENT 

ACCESS TO TRANSPLANTATION: 

Differences in Waiting Times for Kidneys 
OFFICE OF INSPECTOR GENERAL 

The mission of the Office of Inspector General (OIG), as mandated by Public Law 95-452, is to 

protect the integrity of the Department of Health and Human Services programs as well as the 

health and welfare of beneficiaries served by them. This statutory mission is carried out through a 

nationwide program of audits, investigations, inspections, sanctions, and fraud alerts. The 

Inspector General informs the Secretary of program and management problems and recommends 

legislative, regulatory, and operational approaches to correct them. 

Office of Evaluation and Inspections 

The Office of Evaluation and Inspections (OEI) is one of several components of the Office of 

Inspector General. It conducts short-term management and program evaluations (called 

inspections) that focus on issues of concern to the Department, the Congress, and the public. The 

inspection reports provide findings and recommendations on the efficiency, vulnerability, and 

effectiveness of departmental programs. 

OEI's Boston Office prepared this report under the direction of Mark R. Yessian, Ph.D., Regional 

Inspector General. Principal OEI staff included: 

REGION HEADQUARTERS 

Russell W. Hereford, Ph.D., Project Leader Alan Levine, Program Specialist 

Maria E. Maddaloni, M.A., Program Analyst 

To obtain copies of this report, please call the Boston Regional Office at 617-565-1050 

Reports are also available on the World Wide Web at our home page address: 

http://www.dhhs.gov/progorg/oei 
EXECUTIVE SUMMARY

For the past decade, the Office of Inspector General has maintained an active interest in this 

nation’s organ allocation system. Our work has been guided by three underlying tenets that the 

Congress spelled out in the National Organ Transplant Act: 

C An equitable system, with each person on a transplant waiting list having an equal 

opportunity to receive a transplant subject to established medical criteria; 

C A national system adhering to uniform policies and standards; and 

C A cooperative system based on the best interests of patients waiting for transplantation. 

In 1991, we found that the access of patients to donated kidneys fell short of expectations in some 

important respects. For example, we found wide variation in waiting times among racial groups, 

transplant centers and geographic regions. We updated that report in 1998; we found that both 

racial and geographic disparities in waiting times still exist and, in some cases, seem to be 

growing. Today, more than 41,000 people are waiting for a kidney transplant, triple the number 

who were waiting to be transplanted in 1988. 

This report is one in a series designed to shed light on the reasons for and implications of 

inequitable access to organ transplantation. This inquiry analyzes data on median waiting times 

for kidney transplants for two 3-year periods: January 1993 through December 1995 for median 

waiting times, and January 1994 through December 1996 for other data. These data are the most 

recent available from the Organ Procurement and Transplantation Network (OPTN). 

Variation in waiting times for a kidney transplant. Our analysis shows considerable variation 

in median waiting time for kidney transplantation among the OPTN regions. For patients with 

Type O blood, the most common blood type, median waiting time ranged from 420 days to 

1,538 days. 

Likelihood of receiving a kidney transplant. Our review shows that patients in regions with a 

longer waiting time are less likely to receive a transplant. The percentage of patients with Type 

O blood who received a transplant ranged from 23 percent in the region with the longest median 

waiting time to 43 percent in the region with the shortest median waiting time. 

Likelihood of death while awaiting a kidney transplant. Our review finds little variation in 

regional death rates, and a limited relationship with length of time on the waiting list. The use of 

dialysis may provide an explanation for this consistency across regions. 

Our work on organ allocation and donation is continuing. 
WAITING TIMES FOR 

KIDNEY TRANSPLANTATION

Background 

In 1991, the Office of Inspector General documented the expectations that Congress and 

professional leaders had of organ allocation systems and then contrasted those expectations with 

actual practices.1 We found that the access of patients to donated kidneys fell short of 

expectations in some important respects; for example, we found wide variation in waiting times 

among transplant centers and among different geographic regions of the country, as well as 

disparities between blacks and whites in waiting times for a kidney transplant. We also found that 

organ distribution remained heavily controlled by individual transplant centers. We found that 

among some transplant centers and professionals, a sense of local ownership toward organs 

impeded the development of a national system for distributing organs. 

Our work in this area has led us to call for an organ allocation system that focuses on: 

C equity among patients, not among transplant centers, and 

C common medical criteria, not on the circumstances of a patient’s residence or transplant

center affiliation. 

We reiterated these recommendations during testimony at the April 8, 1998, hearing of the House 

Subcommittee on Human Resources of the Committee on Government Reform and Oversight. 

We also updated differences based on race and geography for testimony before that subcommittee 

in June 1998. As of April 1999, more than 41,000 people are waiting for a kidney transplant, 

triple the number who were waiting to be transplanted in 1988. 

This Inquiry 

The purpose of this inquiry is to shed light on the implications of regional variation in median 

waiting time for kidney transplantation. Our analysis focuses at the Organ Procurement and 

Transplantation Network (OPTN) regional level. 

We use aggregate data from the OPTN, published in January 1999.2 These data cover two threeyear periods: January 1993 through December 1995 for median waiting times, and January 1994 

through December 1996 for data on rates of death and likelihood of transplantation.3 The OPTN 

data are not risk-adjusted to account for the influence of a number of additional factors that may 

affect waiting time and access to transplantation. These factors could include individual patient 

medical status and characteristics; transplant center criteria for placing a patient on the waiting 

list; individual physician practices in referring and approving patients for transplant; the number, 

size, and maturity of transplant programs operating in a region; and the number of patients who 

are listed at more than one transplant center. 

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National Overview of Waiting List for Kidney Transplants 

During the 3-year period January 1994 through December 1996, almost 74,000 people were 

registered on the waiting lists for a kidney transplant. About one-third of these people received a 

transplant, but 6 percent of the total died while on the transplant list.4 

Table 1 shows the number of patients listed for kidney transplant in the 11 OPTN regions for all 

blood types. The regions comprise different geographical areas and population bases. Although 

regions serve a central role in the current organ allocation system, the number of patients listed, 

the number of transplant programs, and the number of organ procurement organizations vary 

among the regions.5 Moreover, patients may be listed in a region in which they do not reside. 

Table 1 

Patients Listed for Kidney Transplant (all Blood Types) by OPTN Region 

January 1994 - December 1996 

OPTN 

Region States in Region Patients Listed for Transplant 

1 Connecticut, Massachusetts, Maine, New Hampshire, Rhode 

Island, Vermont 

3,602 

2 Delaware, Maryland, Pennsylvania, New Jersey, 

West Virginia, District of Columbia, Northern Virginia 

11,086 

3 Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi, 

Puerto Rico 

8,395 

4 Texas, Oklahoma 4,890 

5 Arizona, California, Hawaii, Nevada, New Mexico, Utah 13,236 

6 Alaska, Idaho, Montana, Oregon, Washington 1,811 

7 Illinois, Minnesota, North Dakota, South Dakota, Wisconsin 8,327 

8 Colorado, Iowa, Kansas, Missouri, Nebraska, Wyoming 3,609 

9 New York 6,090 

10 Indiana, Ohio, Michigan 6,598 

11 Kentucky, North Carolina, South Carolina, Tennessee, Virginia 

(outside of Northern Virginia) 

6,284 

Source: 1997 Report of the OPTN: Waiting List Activity and Donor Procurement, Kidney Volume, January 1999. 

Waiting Times, Transplants Performed, and Death Rates 

Here we present and describe data on median waiting time, patients who received a kidney 

transplant, and patients who died while awaiting a transplant.6 We focus our discussion on 

patients with Type O and Type A blood; patients with these two blood types comprise 81 percent 

of those waiting for a kidney transplant.7 Where median waiting time is indicated, we refer to the 

median waiting time for patients listed for a primary kidney transplant.8 

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Patients with Type O Blood — Waiting Time for Transplant 

Table 2 presents data for individuals with Type O blood, who comprise 49 percent of the total 

waiting list. Figures 1, 2, and 3 (pages 6-8) present map-based displays of these data. The data 

show striking differences among the OPTN regions with respect to the median time that patients 

spend on the waiting list. Although the national median waiting time is 915 days, it varies from as 

low as 420 days in Region 6, comprising the Northwestern States, to 1,538 days — more than 4 

years — in Region 9, New York State. 

Table 2 

Median Waiting Time for Primary Transplant (January 1993 - December 1995) 

Transplants Performed and Deaths (January 1994 - December 1996) 

Kidney Patients with Type O Blood 

OPTN 

Region 

Patients 

Registered for 

Transplant 

Median Waiting 

Time (days) 

Percent 

Transplanted Percent who Died 

1,759 1,273 26 % 8 % 

5,286 988 29 7 

4,257 516 37 6 

2,602 514 41 4 

6,734 1,134 25 7 

891 420 42 5 

3,963 974 28 7 

1,727 486 43 6 

2,921 1,538 23 7 

3,074 730 36 7 

3,185 927 34 7 

National 

Total 36,399 915 31 % 7 % 

Source: 1997 Report of the OPTN: Waiting List Activity and Donor Procurement, Kidney Volume, January 1999. 

Percent Receiving a Transplant 

Regions with the shortest median waiting times had the highest percentage of patients 

transplanted. For example, in Region 6, where median waiting time was 420 days, 42 percent of 

those on the list received a transplant, and in Region 8, where median waiting time was 486 days, 

43 percent received a transplant. In contrast, only 23 percent of patients were transplanted in 

Region 9, which had the longest median waiting time of 1,538 days. 

Deaths while Waiting for Transplant 

As Table 2 shows, death rates are generally uniform from region to region. It is not surprising 

that death rates are relatively consistent across regions. Without transplantation, patients with 

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renal failure are sustained by dialysis which typically is provided on a continuing basis. 

Patients with Type A Blood — Waiting Time for Transplant 

Table 3 presents data for individuals with Type A blood, who comprise 32 percent of the total 

waiting list. Figures 4, 5, and 6 (pages 9-11) present map-based displays of these data. For all 

regions, waiting times for patients with Type A blood are noticeably shorter than for those with 

Type O blood. Waiting times range from a low of 202 days in Region 4 (Texas and Oklahoma) to 

a high of 1,159 days in Region 9 (New York State). 

Table 3 

Median Waiting Time for Primary Transplant (January 1993 - December 1995) 

Transplants Performed and Deaths (January 1994 - December 1996) 

Kidney Patients with Type A Blood 

OPTN 

Region 

Patients Registered 

for Transplant 

Median Waiting 

Time (days) 

Percent Transplanted Percent 

who Died 

1,229 797 32 % 6 % 

3,552 591 39 7 

2,476 235 49 5 

1,511 202 57 4 

4,102 595 36 6 

615 211 57 4 

2,841 588 35 7 

1,367 358 48 6 

1,933 1,159 28 6 

2,332 584 40 7 

1,928 367 48 6 

National 

Totals 23,886 489 41 % 6 % 

Source: 1997 Report of the OPTN: Waiting List Activity and Donor Procurement, Kidney Volume, January 1999 

Percent Receiving a Transplant 

Regions 4 and 6, both with the shortest median waiting times of just over 200 days, also had the 

highest percentages of patients receiving transplants. In contrast, Region 9 had the longest 

median waiting time (1,159 days) and the lowest percentage of patients receiving transplants, 

28 percent. 

Deaths while Waiting for Transplant 

As with patients with Type O blood awaiting kidney transplants, death rates are generally uniform 

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from region to region. 

Conclusions 

Our review found a relationship between the median waiting time for kidney transplants and the 

percentage of patients who actually receive a transplant. Not surprisingly, the longer the waiting 

time within an OPTN region, the lower the likelihood of a patient’s actually receiving a transplant. 

However, death rates while awaiting a kidney transplant generally are consistent across regions, 

despite the variations in median waiting time. The availability and use of kidney dialysis may 

provide an explanation for this consistency. In the absence of transplantation, patients with renal 

failure must be sustained by dialysis on a continuing basis.7 

Our work on organ allocation and donation is continuing. 

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Endnotes

1. HHS Office of Inspector General (OIG), The Distribution of Organs for Transplantation: 

Expectations and Practices. (OEI-01-89-00550), March 1991. 

2. 1997 Report of the Organ Procurement and Transplantation Network: Waiting List Activity 

and Donor Procurement, Kidney Volume, January 1999. These data, although somewhat dated, 

are the latest publicly available from the OPTN. They are the type of data that are accessible to 

the members of the public who want to assess waiting times and likelihood of a transplant among 

various OPTN regions and, indeed, at transplant centers within those regions. 

3. “Due to the typically longer waiting times for patients awaiting kidney transplantation, the 

median waiting time and the percent of patients transplanted analyses were based on patient 

registrations during 1993-95. If a more recent time period were used, medians would not be 

calculable for many categories.” 1997 Report of the Organ Procurement and Transplantation 

Network: Waiting List Activity and Donor Procurement, Kidney Volume, January 1999, p. 6. 

4. 73,928 registrants were listed on the waiting lists for kidney transplants. 21,851 of these 

(30 percent) were listed at the start of this period, and 52,077 were added during this period. 

Of the 73,928 registrants, 34 percent (25,320) received a transplant. Six percent (4,758) died 

while on the waiting list, and 17 percent (12,594) were removed from the list for other reasons. 

These include refusing a transplant, being transferred to another center, being medically 

unsuitable, either improving so a transplant was not needed or deteriorating so that the patient 

was too sick to transplant, being transplanted at another center, receiving a living donor 

transplant, or some other reason. 

5. The following table provides data on number of organ procurement organizations (OPOs) and 

kidney transplant centers by OPTN region: 

OPTN 

Region 

Number of 

OPOs (1996) Number of Kidney Transplant Programs (1996) 

2 16 

5 33 

12 26 

4 26 

10 38 

2 7 

4 22 

5 25 

5 15 

6 24 

10 25 

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6. The median waiting time is the number of days by which 50 percent of the cohort received a 

transplant. The cohort in this analysis includes all patients who were added to the waiting list 

between January 1, 1993 and December 31, 1995. 

As used in the OPTN report, median waiting time is based on the number of days between the 

patient being listed and one of three outcomes: (a) receipt of a transplant; (b) removal from the 

transplant list, including death of the patient; or (c) September 17, 1997, the cutoff date for the 

OPTN data analysis. 

In addition, the OPTN data include patients who are listed at more than one center; according to 

OPTN, this figure is about 5 percent of all patients. For this reason, OPTN uses the term 

registrants, rather than patients. A registrant is counted as having received a transplant only at the 

center (or within the region) at which the transplant was performed. 

7. We use blood type in our analysis because the OPTN report aggregates data for all statistics 

presented in this report by blood type only. Patients with Type B blood comprise 15 percent of 

the waiting list, and those with Type AB blood comprise 3 percent of the waiting list. For these 

blood types, the distribution of waiting times, percent of patients receiving a transplant, and 

deaths while awaiting a transplant is similar to that for patients with Type O and Type A blood. 

8. Between January 1, 1993, and December 31, 1995, 49,909 registrants were added to kidney 

transplant lists; 42,190 (85 percent) were added for a primary transplant and 7,719 (15 percent) 

were added for a repeat transplant. 

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