Department of Health and Human Services 

OFFICE OF 

INSPECTOR GENERAL 

JUNE GIBBS BROWN 

Inspector General 

MAY 1999 

OEI-01-99-00210 

FOSTERING EQUITY IN PATIENT 

ACCESS TO TRANSPLANTATION: 

Differences in Waiting Times for Livers 
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 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 patient’s 

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. 
WAITING TIMES FOR LIVER

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 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. 

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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 

Region States in Region Patients Listed for Transplant 

1 Connecticut, Massachusetts, Maine, New Hampshire, Rhode 

Island, Vermont 

1,218 

2 Delaware, Maryland, Pennsylvania, New Jersey, 

West Virginia, District of Columbia, Northern Virginia 

4,036 

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

Puerto Rico 

1,997 

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 

(outside of Northern Virginia) 

1,545 

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 

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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 

Region 

Patients Registered 

for Transplant 

Median Waiting 

Time (days) 

Percent 

Transplanted 

Percent who 

Died 

569 958 30 % 16 % 

1,827 572 38 13 

941 123 64 9 

844 213 52 13 

2,233 723 39 8 

353 344 46 8 

1,248 393 44 12 

823 384 49 12 

825 496 43 9 

828 475 46 15 

723 208 56 9 

National 

Total 11,214 374 45 % 11 % 

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 

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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 

Region 

Patients Registered 

for Transplant 

Median Waiting 

Time (days) 

Percent 

Transplanted 

Percent who 

Died 

457 953 36 % 13 % 

1,518 359 44 11 

758 91 67 9 

640 202 60 9 

1,679 299 50 7 

301 214 56 6 

993 146 54 9 

646 159 63 7 

603 245 49 10 

706 311 58 10 

589 96 67 8 

National 

Total 8,890 210 54 % 9 % 

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

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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 patient’s 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. 

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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. 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 

Region 

Number of 

OPOs (1996) 

Number of Liver Transplant 

Programs (1996) 

2 6 

5 14 

12 12 

4 12 

10 18 

2 4 

4 11 

5 11 

5 6 

6 10 

10 13 

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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 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. 

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