Department of Health and Human Services 
OFFICE OF 
INSPECTOR GENERAL 
FOSTERING EQUITY IN PATIENT 
ACCESS TO TRANSPLANTATION: 
Differences in Waiting Times for Kidneys 
JUNE GIBBS BROWN 
Inspector General 
MAY 1999 
OEI-01-99-00211  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 
nations 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 patients 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 three-
year 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. 
- 1 -
 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  Patients Listed 
States in Region 
Region  for Transplant 
1  Connecticut, Massachusetts, Maine, New Hampshire, Rhode  3,602 
Island, Vermont 
2  Delaware, Maryland, Pennsylvania, New Jersey,  11,086 
West Virginia, District of Columbia, Northern Virginia 
3  Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi,  8,395 
Puerto Rico 
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  6,284 
(outside of Northern Virginia) 
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 
- 2 -
 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  Patients  Median Waiting  Percent 
Region  Registered for  Time (days)  Transplanted  Percent who Died 
Transplant 
1 1,759  1,273  26 %  8 % 
2 5,286  988  29  7 
3 4,257  516  37  6 
4 2,602  514  41  4 
5 6,734  1,134  25  7 
6 891  420  42  5 
7 3,963  974  28  7 
8 1,727  486  43  6 
9 2,921  1,538  23  7 
10 3,074  730  36  7 
11 3,185  927  34  7 
National 
36,399  915  31 %  7 % 
Total 
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  Patients Registered  Median Waiting  Percent Transplanted  Percent 
Region  for Transplant  Time (days)  who Died 
1 1,229  797  32 %  6 % 
2 3,552  591  39  7 
3 2,476  235  49  5 
4 1,511  202  57  4 
5 4,102  595  36  6 
6 615  211  57  4 
7 2,841  588  35  7 
8 1,367  358  48  6 
9 1,933  1,159  28  6 
10 2,332  584  40  7 
11 1,928  367  48  6 
National 
23,886  489  41 %  6 % 
Totals 
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 
- 4 -
 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 patients 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. 
- 5 -
       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  Number of  Number of Kidney Transplant
Region  OPOs (1996)  Programs (1996) 
  1 2  16 
  2 5  33 
  3 12  26 
  4 4  26 
  5 10  38 
  6 2  7 
  7 4  22 
  8 5  25 
  9 5  15 
10 6  24 
11 10  25 
- 12 -
 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. 
- 13 -