Department of Health and Human Services 

OFFICE OF 

INSPECTOR GENERAL * 

RACIAL AND GEOGRAPHIC DISPARITY 

IN THE DISTRIBUTION OF ORGANS 

FOR TRANSPLANTATION 

JUNE GIBBS BROWN 

Inspector General 

JUNE 1998 

OEI-0 l-98-00360 
DEPARTMENT OF HEALTH 81 HUMAN SERVICES Office of Inspector General 

Washington, D.C. 20201 

JUN IO 1998 

The Honorable Thomas M. Barrett 

House of Representatives 

Washington, DC 205 15-4905 

Dear Mr. Barrett: 

I am in receipt of your letter of May 4, 1998, asking our office to conduct an update of our 1991 

report entitled, “The Distribution of Organs for Transplantation: Expectations and Practices.” 

(We include your letter in Appendix A of this report.) You indicate that much has changed since 

the issuance of the report and that an update could help in the consideration of current policy 

recommendations concerning organ allocation. You also request that, as part of the inquiry, we 

examine if the recently proposed final rule of the Department of Health and Human Services 

(HHS) is likely to correct current deficiencies in the organ allocation system. 

In response to your request, we have prepared the following report. In it, we have reviewed the 

data available from the Organ Procurement and Transplantation Network (OPTN) in two of the 

major areas that we addressed in our 1991 report and that you have expressed interest in: racial 

and geographic disparities in waiting times for cadaver kidneys and livers. Our findings indicate 

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

be growing. 

The available OPTN data suggest that median waiting times for both liver and kidney transplants 

have continued to increase across race. However, while waiting times for liver transplants have 

been nearly equal for whites and blacks, black recipients still wait longer than white recipients 

for kidney transplants. In fact, the difference in waiting times has grown. 

Geographic differences in waiting times exist across regions, both in general and in regards to 

race. For both kidney and liver registrants of all races, median waiting times vary substantially 

from OPTN region to region. The difference in waiting times between white and black kidney 

registrants also varies widely across OPTN regions. 
Page 2 - The Honorable Thomas M. Barrett 

This review leads us to reemphasize the importance of the central thrust of our 1991 report--that 

the national organ allocation system should focus on equity among patients, not among 

transplant centers; and on common medical criteria, not the circumstances of a patient’s 

residence or transplant center affiliation. We continue to believe that the April 2, 1998 HHS rule 

on organ allocation moves in that direction. 

In the following report, we close by indicating that the national discussion of organ allocation 

has led us to recognize even more fully the underlying importance of having organ donation and 

procurement systems function as effectively as possible. We note some follow up work we will 

be doing in that regard, focused on State laws requiring hospitals to refer all deaths to Organ 

Procurement Organizations. 

I appreciate your interest in our work and will keep you informed of our continued efforts in the 

field of organ transplantation. If you have any questions or comments, please call me or have 

your staff call Helen Albert, Director, External Affairs, at (202) 619-0275. 

Sincerely, 

June Gibbs Brown 

Inspector General 

Enclosure 
Introduction 

In 199 1, we issued a report entitled “The Distribution of Organs for Transplantation: Expectations 

and Practices” (OEI-01-89-00550). In that report, we documented the expectations that Congress 

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

with actual practices. As a result, we found a particularly disturbing mismatch between 

expectations and practices concerning the equity of organ allocation systems. Congress and 

professional leaders, we showed, clearly expected the development of an equitable system, with 

each person on a transplant waiting list having an equal opportunity to receive a transplant, 

subject to established medical criteria. The reality, we found, was quite different, particularly 

with respect to race and geography. Our findings led us to call for an organ allocation system that 

focuses on (1) equity among patients, not among transplant centers and (2) common medical 

criteria, not the circumstances of a patient’s residence or transplant center affiliation. 

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

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

Further, we indicated that the HHS rule published on April 2, 1998 in the Federal Register moved 

in a direction responsive to the thrust of our findings and recommendations by calling for: 

performance goals for standardized criteria for listing patients on transplant waiting lists, 

standardized criteria for the medical status of those on waiting lists, and organ allocation policies 

that give priority to those whose needs are most urgent. With currently three times as many 

individuals awaiting a transplant as there were in 199 1, we stated that it was even more imperative 

that congressional expectations of the organ allocation system closely match the actual practices. 

Subsequent to that testimony, Congressman Tom Barrett, a member of the Subcommittee on 

Human Resources, asked that we update the findings of our 199 1 report. This brief report is a 

response to that request, focusing on two of the major areas we addressed in it: racial and 

geographic disparities in waiting times for transplantation. It is based on a review of data 

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

Racial Disparities 

In addressing this issue in our 1991 report, at a time when liver transplants were just moving 

beyond the experimental stage, we focused on black-white discrepancies in waiting time for a first 

kidney transplant. We found that between October 1, 1987 and March 3 1, 1989, the median 

waiting times for blacks was almost twice as long as for whites: 13.9 months compared with 7.9 

months. 

The available OPTN data suggest that in the ensuing years there has been no improvement in this 

discrepancy and perhaps even some slippage. The data on kidney transplants are not exactly 

comparable to our earlier data, as they reflect waiting time to a transplant (not necessarily a first 

transplant) and a somewhat different methodology. Further, the OPTN data allowing black-white 

comparisons are available only through 1994.’ They reveal that waiting times have continued to 

1 
escalate for both blacks and whites, but somewhat more so for blacks than whites. From 1988 to 

1994, the median waiting time for whites for a kidney transplant increased from 11.3 months to 

20.1 months (78 percent).* (See table 1 below.) During that same period, the median waiting 

time for blacks increased from 20.1 months to 39.7 (98 percent). 

Table 1 

Median Waiting Time (in Months) to Kidney 

TransDlant Bv Race 1 I 

Year Black White Difference 

Recipients Recipients 

I I 

1988 1 20.1 I 11.3 I 8.8 

1989 1 21.4 I 12.7 I 8.7 

1990 1 24.9 I 13.3 I 11.6 

1991 1 26.7 I 14.1 I 13.7 

1992 1 29.8 I 16.0 I 13.8 

1993 1 34.9 I 1’8.7 I 16.2 

x1 39.7 1 20.1 1 19.6 

Source: Organ Procurement and Transplantation Network 

(OPTN), 1997 OPTN/SR AR 1988-1996. UNOS; 

DOT/HRSA/DHHS. 

In regard to waiting times for liver transplants, which we did not examine in our 1991 report, the 

picture is quite different. (See table 2 below.) Here, too, we find that there has been a significant 

increase in waiting times, but that the waiting time for whites and blacks has been more nearly 

equal than in the case of kidney transplants. During the period of 1988 to 1996, the median 

waiting time for the two races remained close for each year until 1996 when the median waiting 

time for whites was considerably greater than that for blacks: 12.4 months compared with 9.2 

months. Whether this is a 1 year aberration or the beginning of a trend remains unclear to us at 

this point. 

2 
Table 2 

Median Waiting Time ( in Months) to Liver 

Transplant By Race 

1988 1 1.1 1 1.0 1 0.1 

1989 1 1.2 1 1.2 1 0.0 

1990 I 1.7 I 1.4 I 0.3 

1991 1 2.1 1 2.2 1 -0.1 

1992 1 3.9 1 3.4 1 0.5 

1993 1 4.5 1 4.7 1 -0.2 

1994 1 5.6 1 5.3 1 0.3 

T-- 8.0 1 8.4 1 -0.4 

19969.2 1 12.4 1 -3.2 

Source: Organ Procurement and Transplantation Network 

(OPTN). 1997 OPTN/SR AR 1988-1996. UNOS; 

Geographic Disparities 

In our 199 1 report we also examined variations among transplant centers in waiting time for a 

first kidney transplant. We found that from October 1987 through March 1989, the median 

patient waiting time for a first kidney transplant ranged from a low of less than 1 month at one 

center to a high of 71 months at another. In the background presented with its April 2, 1998 rule 

on organ allocation, HHS presented considerable data indicating that geographic disparities are 

still significant among transplant centers, local Organ Procurement Organization service areas, 

and OPTN regions. 

In our review of the most recent OPTN data available on median waiting times for OPTN regions, 

we were struck by the significant differences that continue to exist, both in general and with 

particular respect to white-black differentials. Table 3 below presents the picture for kidney 

registrants in the 1993-1995 period. For each race, we find substantial differences in median 

waiting time across the 11 regions. Whereas the median waiting time for whites in Region 6 was 

9 months, it was more than 3 times that in Region 1 (33 months). The similar range for blacks 

was from a low of 16.3 months in Region 4 to a high of 43.8 in Region 6. Further, for each 

3 
1 

2 

3 

4 

5 

6 

7 

8 

9 

10 

11 

region, we find that blacks wait longer than whites.3 The difference is most profound in Region 

11, where the median waiting time for blacks is 37.2 months compared with 13.6 for whites. It is 

smallest in Region 4, where the differential is 16.3 verses 9.1. 

Table 3 

Median Waiting Time (in Months) for Primary 

Kidney Registrants from 1993-1995 by OPTN 

Region ,?., 

OPTN Black White, Differe&e 

Regioli Recipients Recipientsj. 

42.5 33.0 9.5 

36.8 23.4 13.4 

II 1 23.6 1 9.5 1 14.1 

II I 16.3 I 9.1 I 7.2 

II I 41.3 I 27.0 I 14.3 

43.8 9.0 34.8 

40.5 20.1 20.4 

I 20.7 I 12.9 I 7.8 

II NA 32.0 NA 

II I 40.2 I 17.5 I 22.7 

37.3 13.6 23.7 

Source: Organ Procurement and Transplantation Network 

(OPTN). 1997 Report of the OPTS 

NA- Data not available. 

Table 4 below provides the comparable waiting time information for liver registrants in the 1994-

1996 period. Here, consistent with table 2 above, we find that for most regions the median 

waiting times for whites and blacks are quite similar. For each race, however, we see that there is 

considerable inter-regional variation. In Region 3, the median waiting time for blacks was only 3 

months compared with a high of 16.4 months in Region 5. For whites, the range was from 3.5 

months to as much as 28.3. (It should be noted, here, that the number of black registrants in some 

regions was quite small--for instance, only 16 in Region 6 and 91 in Region 8.) 

4 
1 

2 

3 

4 

5 

6 

7 

8 

9 

10 

11 

Table 4 

Median Waiting Time (in Months) for Primary 

Liver Registrants from 1994-1996 by OPTN 

Region 

OPTN Black White Diffqwnce 

Region Recipients

I Recipients 

NA 28.3 NA 

14.5 14.6 -0.1 

3.0 3.5 -0.5 

6.0 6.9 -0.9 

I 16.4 I 15.9 I 0.5 

I 10.9 I 9.0 I 1.9 

--I 14.7 I 8.2 I 6.5 

I 7.4 I 7.6 I -0.2 

I 8.1 I 12.2 I -4.1 

I 13.3 I 12.0 I 1.3 

I 4.3 I 5.0 I -0.7 

Source: Organ Procurement and Transplantation Network 

(OPTN). I997 Report of the OPTS 

NA- Data not available. 

Concluding Points 

Our brief review of these data lead us to reaffirm the importance of the central message we 

presented in our 1991 report--that the national organ allocation system should focus on equity 

among patients, not among transplant centers and on common medical criteria, not the 

circumstances of a patient’s residence or transplant center affiliation. We continue to believe that 

the April 2, 1998 HHS rule moves in that direction. 

The national discussion on organ allocation also leads us to recognize even more fully the 

importance of having organ donation and procurement systems that function as effectively as 

possible. More productive systems will expand the total pool of organs available for 

transplantation and in so doing could help ease some of the controversy about who might gain and 

lose under different allocation schemes. 

5 
Thus, we will be giving priority attention to examining the early implementation efforts of the 

required referral laws that some States have passed in recent years. These laws call for hospitals 

to refer all deaths to their local Organ Procurement Organizations (OPOs) so that trained OPO 

staff can consider their suitability as donors. Our intent is to examine promising approaches that 

states have used in carrying out these laws as well as some of the barriers they have encountered, 

in order to assist other state efforts to move in this direction. 

Endnotes 

1. The OPTN states that due to long waiting times to kidney transplant, median waiting times 

could not be computed after 1994. (1997 OPTN/SR AR 1988-1996. UNOS; DOT/HRSNDHHS) 

2. For Tables l-4, we converted median waiting times from days (as provided by OPTN) into 

months. The OPTN defines median waiting time as “ the estimated number of days until at least 

50% of new registrants have been transplanted and are off the waiting list” (1997 OPTIWR AR 

1988-1996. UNOS; DOT/HRSNDHHS, 12). 

3. The disparity in waiting times for blacks and whites also varies widely across OPTN regions, 

from 7.2 months difference in Region 4 to 34.8 months difference in Region 6. 

6 
APPENDIX A 

i: ‘. ~.::Cgngree’e’ of the Wtiteb &ate$ 

..,. ‘.’ PjouBeof SRepreeentatibeS ?I,...,., ‘QBlaebington,B& 205154905 

May 4, 1998 

June Gibbs Brown 

Inspector General 

Department of Health and Human Services 

Office of Inspector General 

330 Independence Avenue, SW 

Washington, DC 20201 

Dear Inspector Gibbs: 

The purpose of this letter is to request that your office update a 1991 report entitled “The 

Distribution of Organs for Transplantation: Expectations and Practices.” At the time this report 

was issued by the Of&e of Inspector General, 20,000 people were waiting for organ transplants. 

The impetus for the report stemmed from concerns about fairness in the organ allocation process, 

Despite the 1984 enactment of the National Organ Transplant Act, serious problems remained in 

the organ donation and allocation system. 

Because of reported deficiencies in the system, your office issued a report to (1) clarify 

expectations governing organ distribution practices in the United States; (2) determine the extent 

to which actual practices were in accord with expectations and, (3) offer recommendations that 

facilitated accord between expectations and practices. The most striking finding was that patient 

access to donated organs remained unequal and that minority populations were likely to remain 

on the waiting lists for longer periods and were less likely to attain organs once on the list. 

Today, about 60,000 people are waiting for organ transplants, the need for organs continues to 

outweigh the donation rates and concerns remain about racial and economic equity in allocation 

decisions. As you know, the Department of Health and Human Services recently put forth a 

proposed final rule governing a national organ allocation system. Much of the rationale 

underlying the new proposed rule is based on data gathered and conclusions reached in your 

1991 report. 

After seven years, the data which formed the premise of the conclusions reached in your 

report may no longer be valid. To assure that the current policy recommendations are likely to 

resolve the current problem, recent and reliable data are necessary. Therefore, I am requesting 

that you update your 1991 report in light of the current information available governing the organ 

allocation system. Additionally, I would like you to examine whether the policies set forth in the 

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APPENDIX A 

June Gibbs Brown 

Department Of Health and Human Services 

May 4, 1998 

Page 2 

proposed final rule promulgated by HRSA are likely to correct the current deficiencies in the 

system. I am particularly interested in the continued existence of economic and racial inequities 

in the organ distribution system and the likely affect the new rules will have on any such 

inequities. I look forward to your response to this request no later than May 15, 1998. If you 

have any questions, please contact Tama Mattocks at 225-3571 or Cheni Branson at 225-XXI. 

Sincerely, 

Tom Barrett 

Member of Congress 

TB:tm 

A-2