Department of Health and Human Services 
OFFICE OF 
INSPECTOR GENERAL 
FOSTERING EQUITY IN PATIENT 
ACCESS TO TRANSPLANTATION: 
Differences in Waiting Times for Livers 
JUNE GIBBS BROWN 
Inspector General 
MAY 1999 
OEI-01-99-00210  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  E X E C U T I V E  S U M M A R Y

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 for kidney and livers; 
we found that both racial and geographic disparities in waiting times still exist and, in some cases, 
seem to be growing.  Today, more than 12,000 people are waiting for a liver transplant, triple the 
number who were waiting to be transplanted in 1994. 
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 liver transplants for the 3-year period ending December 1996.  These data are the most recent 
available from the Organ Procurement and Transplantation Network (OPTN). 
Variation in waiting times for a liver transplant.  Our analysis shows considerable variation in 
median waiting time for liver transplants among the OPTN regions.  For patients with Type O 
blood, the most common blood type, median waiting time ranged from 123 days to 958 days. 
Likelihood of receiving a liver transplant.  Our review shows an inverse relationship between 
the median waiting time for liver transplants and the percentage of patients who actually receive a 
transplant:  The longer the waiting time in an OPTN region, the lower the likelihood of a patients 
actually receiving a transplant.  The percentage of patients with Type O blood who received a 
transplant ranged from 30 percent in one region to 64 percent in another. 
Likelihood of death while awaiting a liver transplant.  Our review shows regional variation in 
rates of death, but only limited relationship with length of time on the waiting list.  Rates of death 
for Type O patients waiting for a liver transplant ranged from 8 percent in two regions to 16 
percent in one region.  This implies that factors other than waiting time, such as patient 
characteristics and listing practices, may affect the rate of death among transplant candidates. 
Our work on organ allocation and donation is continuing.  W A I T I N G   T I M E S   F O R   L I V E R

T R A N S P L A N T A T I O N

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 12,000 people are waiting for a liver transplant, triple 
the number who were waiting to be transplanted in 1994. 
This Inquiry 
The purpose of this inquiry is to shed light on the implications of regional variation in median 
waiting times for liver transplantation.  Our analysis focuses at the Organ Procurement and 
Transplantation Network (OPTN) regional level.2 
We use aggregate data from the OPTN, published in January 1999.3  These data cover the 3-year 
period January 1994 through December 1996.  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 Liver Transplants 
During the 3-year period January 1994 through December 1996, almost 24,000 people were 
registered on the waiting lists for a liver transplant.  Almost half of these people received a 
transplant, but 10 percent of the total died while on the transplant list.4 
Table 1 shows the number of patients listed for liver 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 Liver 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  1,218 
Island, Vermont 
2  Delaware, Maryland, Pennsylvania, New Jersey,  4,036 
West Virginia, District of Columbia, Northern Virginia 
3  Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi,  1,997 
Puerto Rico 
4  Texas, Oklahoma  1,721 
5  Arizona, California, Hawaii, Nevada, New Mexico, Utah  4,658 
6  Alaska, Idaho, Montana, Oregon, Washington  735 
7  Illinois, Minnesota, North Dakota, South Dakota, Wisconsin  2,701 
8  Colorado, Iowa, Kansas, Missouri, Nebraska, Wyoming  1,711 
9  New York  1,697 
10  Indiana, Ohio, Michigan  1,829 
11  Kentucky, North Carolina, South Carolina, Tennessee, Virginia  1,545 
(outside of Northern Virginia) 
Source: 1997 Report of the OPTN: Waiting List Activity and Donor Procurement, Liver Volume, January 1999. 
Waiting Times, Transplants Performed, and Death Rates 
Here we present and describe data on median waiting time, patients who received a liver 
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 84 percent 
of those waiting for a liver transplant.7  Where median waiting time is indicated, we refer to the 
)))))))))))
2  median waiting time for patients listed for a primary liver transplant.8 
Patients with Type O Blood  Waiting Time for Transplant 
Table 2 presents data for individuals with Type O blood, who comprise 47 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 time that patients spend on 
the waiting list.  Although the national median waiting time is 374 days, it varies from 123 days in 
Region 3, comprising the Southeastern States, to 958 days in Region 1, New England.9 
Table 2 
Median Waiting Time for Primary Transplant, Transplants Performed, and Deaths 
Liver Patients with Type O Blood 
(January 1994 - December 1996) 
OPTN  Patients Registered  Median Waiting  Percent  Percent who 
Region  for Transplant  Time (days)  Transplanted  Died 
1 569  958  30 %  16 % 
2 1,827  572  38  13 
3 941  123  64  9 
4 844  213  52  13 
5 2,233  723  39  8 
6 353  344  46  8 
7 1,248  393  44  12 
8 823  384  49  12 
9 825  496  43  9 
10 828  475  46  15 
11 723  208  56  9 
National 
11,214  374  45 %  11 % 
Total 
Source: 1997 Report of the OPTN: Waiting List Activity and Donor Procurement, Liver Volume, January 1999. 
Percent Receiving a Transplant 
Almost as striking is the relationship between median waiting time for a liver transplant, and the 
likelihood of a patient receiving a transplant.  In three regions  Regions 3, 11, and 4   more 
than 50 percent of patients on the waiting list during the 3 year period received a transplant. 
These patients were on the waiting lists in the regions with the shortest median waiting times. 
Conversely, in the three regions with the longest median waiting times  Regions 1, 2, and 5  
fewer than 40 percent of patients received a transplant. 
Deaths while Waiting for Transplant 
)))))))))))
3  As Table 2 shows, the relationship between median waiting time and the rate of patient deaths for 
those with Type O blood is not as clear cut as the relationship between waiting time and the 
likelihood of receiving a transplant.  The data show variation in the proportion of patients who 
died while on the waiting list, ranging from 8 percent in Regions 5 and 6, to 16 percent in Region 
1 and 15 percent in Region 10.  At one extreme, Region 1 exhibited both the highest death rate 
among patients waiting for transplant and the longest median waiting time.  However, Region 5 
showed the second longest waiting time, but it also had the lowest rate of patient deaths.  And 
Region 4, with the third shortest waiting time, had the third highest death rate of 13 percent. 
As we note above, these data are not risk-adjusted to reflect characteristics of individual patients, 
or the physicians and transplant centers involved in their care.  The lack of relationship between 
waiting times and death rates may well reflect the importance of these other explanatory factors. 
Patients with Type A Blood  Waiting Time for Transplant 
Table 3 presents data for individuals with Type A blood, who comprise 37 percent of the total 
waiting list.  Figures 4, 5, and 6 (pages 9-11) present map-based displays of these data.  With one 
exception (Region 1), waiting times for patients with Type A blood were noticeably shorter than 
for those with Type O blood. 
Table 3 
Median Waiting Time for Primary Transplant, Transplants Performed, and Deaths 
Liver Patients with Type A Blood 
(January 1994 - December 1996) 
OPTN  Patients Registered  Median Waiting  Percent  Percent who 
Region  for Transplant  Time (days)  Transplanted  Died 
1 457  953  36 %  13 % 
2 1,518  359  44  11 
3 758  91  67  9 
4 640  202  60  9 
5 1,679  299  50  7 
6 301  214  56  6 
7 993  146  54  9 
8 646  159  63  7 
9 603  245  49  10 
10 706  311  58  10 
11 589  96  67  8 
National 
8,890  210  54 %  9 % 
Total 
Source: 1997 Report of the OPTN: Waiting List Activity and Donor Procurement, Liver Volume, January 1999. 
)))))))))))
4  Percent Receiving a Transplant 
As with Type O patients, median waiting time for patients with Type A blood is closely associated 
with the likelihood of receiving a transplant.  More than two-thirds of patients in Regions 3 and 
11 received transplants; these are the regions with the shortest waiting times.  At the other 
extreme, in Region 1, only 36 percent of patients received a transplant. 
Deaths while Waiting for Transplant 
An examination of data on those who died while on the waiting list shows only a limited 
relationship between length of time on the transplant list and patient death rates.  At one end of 
the spectrum, Region 1 showed a death rate of 13 percent.  However, that rate of death is only 
slightly higher than in other regions, even those with substantially shorter waiting times. 
At the other extreme, shorter waiting times were not necessarily closely related with lower death 
rates.  In Region 6, where 6 percent of patients died while on the waiting list, the median waiting 
time was 214 days.  In those regions with the shortest waiting times  Region 3 (91 days) and 
Region 11 (96 days)   the death rates were 9 percent and 8 percent, respectively.  As we note 
above, factors other than median waiting time may explain the regional variation in rates of death. 
Conclusions 
Differences among OPTN regions in median waiting times for liver transplants, likelihood of 
receiving a transplant, and death rates are considerable.  Our analysis leads us to conclude that 
where liver transplant candidates live  or at least the region in which they are listed  will 
significantly impact their chances of receiving a liver transplant.  We found a clear inverse 
relationship between the median waiting time for liver transplants and the percentage of patients 
who received a transplant.  The longer the waiting time within an OPTN region, the lower the 
likelihood of a patients actually receiving a transplant. 
However, the relationship between median waiting time for a transplant and rates of death is not 
as direct, even though there is wide regional variation in rates of death.  It may well be that other 
factors  for example, listing practices and criteria of transplant center and individual physicians; 
individual patients medical characteristics; and the number, size, and maturity of transplant 
programs  exert a larger impact on death rates than do regional differences in waiting time. 
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.  This type of analysis could also be performed at the level of the individual organ procurement 
organizations (OPO); however, 13 of the OPOs do not have a liver transplant program within 
their service area.  In addition, according to the OPTN, median waiting times cannot be calculated 
at the OPO level for 6 OPOs for registrants with Type O blood (and 3 OPOs for those with Type 
A blood) in areas that have liver transplant programs. 
3.  1997 Report of the Organ Procurement and Transplantation Network: Waiting List Activity 
and Donor Procurement, Liver 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. 
4.  23,848 people were listed on the waiting lists for liver transplants.  2,367 of these people 
(10 percent) were listed at the start of this period, and 21,481 were added to the list during this 
period  19,269 were added for their first (or primary) transplant, and 2,238 for 
retransplantation, i.e., they already had received a transplant. 
Of the 23,848 people on the list, almost half (11,730) received a transplant.  More than 10 percent 
(2,426) died while on the waiting list, and another 12 percent  2,859  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 OPOs and transplant centers by OPTN region: 
OPTN  Number of  Number of Liver Transplant 
Region  OPOs (1996)  Programs (1996) 
  1 2  6 
  2 5  14 
  3 12  12 
  4 4  12 
  5 10  18 
  6 2  4 
  7 4  11 
  8 5  11 
  9 5  6 
10 6  10 
11 10  13 
)))))))))))
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 tot he waiting list 
between January 1, 1994 and December 31, 1996. 
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 
the OPTN, this figure is about 2 percent of all patients awaiting a liver.  For this reason, the 
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 12 percent of 
the waiting list, and those with Type AB blood comprise 4 percent of the waiting list.  For these 
blood types, the distribution of waiting times, percent of patients receiving a transplant types, and 
deaths while awaiting a transplant is similar to that for patients with Type O and Type A blood. 
8.  Between January 1, 1994, and December 31, 1996, 21,507 registrants were added to 
transplant lists; 19,269 (90 percent) were added for a primary transplant and 2,238 (10 percent) 
were added for a repeat transplant. 
9.  Wide variation also exists within, as well as among, the OPTN regions.  At the level of the 
organ procurement organizations, the shortest median waiting time is 46 days; the longest median 
waiting time that the OPTN was able to calculate was 721 days.  In Region 2, which has  5 OPOs, 
median waiting time for patients with Type O blood ranged from 56 to 721 days, and in Region 8, 
also with 5 OPOs, median waiting times ranged from 51 to 596 days.  Within other regions, the 
median waiting times were more narrowly distributed; in Region 11, with 10 OPOs, median 
waiting times ranged from 136 to 274 days, and in Region 3, comprising 12 OPOs, median 
waiting times ranged from 90 to 233 days. 
)))))))))))
13