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 patients 

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 patients  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  14.1  13.7 
I  I 
1992  1  29.8  16.0  13.8 
I  I 
1993  1  34.9  18.7  16.2 
I  I 
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 
 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. 
1  42.5  33.0  9.5 
2  36.8  23.4  13.4 
II  3  1  23.6  1  9.5  1  14.1 
II 
4  I  16.3  I  9.1  I  7.2 
II 
5  I  41.3  I  27.0  I  14.3 
6  43.8  9.0  34.8 
7  40.5  20.1  20.4 
8  20.7  12.9  7.8 
I  I  I 
II  9  NA  32.0  NA 
II 
10  I  40.2  I  17.5  I  22.7 
11  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 
 Table  4 
Median  Waiting  Time  (in Months)  for  Primary 
Liver  Registrants  from  1994-1996  by OPTN 
Region 
OPTN  Black  White  Diffqwnce 
Region  Recipients Recipients 
I 
1  NA  28.3  NA 
2  14.5  14.6  -0.1 
3  3.0  3.5  -0.5 
4  6.0  6.9  -0.9 
5  16.4  15.9  0.5 
I  I  I 
6  I  10.9  I  9.0  I  1.9 
7  14.7  8.2  6.5 
--I  I  I 
8  I  7.4  I  7.6  I  -0.2 
9  I  8.1  I  12.2  I  -4.1 
10  13.3  12.0  1.3 
I  I  I 
11  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 patients  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 

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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 

A-l  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 

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