Department  of  Health  and  Human  Services 
OFFICE  OF 
INSPECTOR  GENERAL 
NATIONAL  MARROW  DONOR  PROGRAM 
PROGRESS  IN  MINORITY  RECRUITMENT  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, evaluations, sanctions, and fraud alerts.  The 
Inspector General informs the Secretary of program and managementproblems and recommends 
legislative, regulatory, and operationalapproachesto correct them. 
OFFICE  OF  EVALUATION  AND  INSPECTIONS 
The OIGSOfficeof Evaluationand Inspections(OEI)conductsshort-termmanagementand

program evaluations(calledinspections)thatfocuson issuesof concernto the Department,the

Congress, andthe public.  The inspectionreportsprovidefindingsand recommendationsonthe

efficiency, vulnerability, and effectivenessof departmentalprograms.

OEISBoston Regional Office prepared this report under the direction of Mark R. Yessian, Ph.D.,

Regional Inspector General.  Principal OEI staff included:

Boston Retion  Headquarters

Russell W. Hereford, Ph.D., Project  Leader  Alan Levine, Program  Specialist

Elizabeth Robboy, Program  Analyst

To obtain a copy of this report, contact the Boston Regional Office by telephone at

(617) 565-1050 or by fax at (617) 565-3751.
 Department  of  Health  and  Human  Services 
OFFICE  OF

INSPECTOR  GENERAL

NATIONAL  MARROW  DONOR  PROGRAM

PROGRESS  IN  MINORITY  RECRUITMENT 
#.-
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$V  JUNE  GIBBS  BROWN 
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DECEMBER  1996
# 0EI-01-95-O0120  EXECUTIVE  SUMMARY 
PURPOSE 
To assess the performance  of the Natioml  Marrow  Donor Program  in increasing  the 
representation  of potential  donors from racial  and ethnic minority  groups on the registry  of 
volunteer  unrelated  marrow  donors. 
BACKGROUND 
Bone marrow  transplantation  is a treatment  for blood borne diseases such as leukemia  and 
lymphoma.  For a transplant  to be successful,  the patients  and donors blood cell proteins, 
referred  to as human  leukocyte  antigens,  must match as closely as possible.  Because 
different  populations  have quite different  genetic traits,  it is much more  likely that a patient 
will find a match  from within his or her own racial  group. 
The National  Marrow  Donor Program  (NMDP),is a nonprofit  organization  based  in 
Minneapolis,  Minnesota,  that finds matching  donors for patients  seeking a transplant.  It 
operates  the congressionally  authorized  marrow  donor registry  under  contract  with the Health 
Resources  and Services  Administration  (HRSA). One major  fimction of the registry  is to 
increase  the representation  of individuals  from racial  and ethnic minority  groups.  
The NMDPaccredits  local donor centers  that recruit  volunteers  to join  the registry.  As of 
October  1995, the registry  contained  almost  1.5 million  donors from 97 domestic  centers.  It 
also has accredited  11 recruitment  groups to help recruit  minority  donors.  This report  is 
based on mail  surveys  of 88 of the 97 domestic  donor centers  and all 11 recruitment  groups; 
statistical  data maintained  by NMDP;and site visits to 9 donors centers  and 4 recruitment 
groups across  the country. 
FINDINGS 
The number  and proportion  of donors on the registry  from racial and ethnic minority 
groups has grown substantially.  However,  the proportion  of black donors and Hispanic 
donors still falls short of their representation  in the U.S.  population. 
In the two and one-half  years between  April  1993 and October  1995, the number  of 
donors  from racial  and ethnic minority  groups increased  by  180 percent,  from 
127,663  to 356,420.  Minority  donor representation  on the registry  grew from 
17 percent  to 25 percent. 
The NMDPreached  the goals specified  in its contract  with HRSAregarding  minority 
recruitment  for the year May  1994-April  1995, with the exception  of Hispanic 
recruitment,  where  it fell short by about 20 percent  (7,000  donors). 
i  As of October  1995, blacks comprised  9 percent  ofdonors  on the registry  (vs.  12 
percent  in the general  population),  and Hispanics comprised  8 percent  of donors  on 
the registry  (vs. 9 percent  in the general  population). 
Even as donor centers  recruitment  of minorities  has increased,  the overall  retention 
rate for these donors has remained  about the same.  However,  retention  rates  among 
donors  from racial  and ethnic minority  groups continue  to lag behind those for whites. 
Few donor centers  have a proportion  of minority  donors that equals or exceeds  the 
proportion  of minorities  living in their service  area.  The NMDP,however,  does not have 
in place performance  indicators  to measure individual  donor centers  progress  in 
recruiting  minorities. 
Seventy-four  of the 97 donor centers  had a smaller proportion  of Hispanics  on their 
lists than reside  in their  service areas.  Sixty-five donor centers  had a smaller 
proportion  of black donors than reside  in their service  areas. 
The distribution  of minority  donors  is concentrated  in a few donor centers.  Twelve 
donor  centers  accounted  for more than 50 percent  of all donors from minority  groups. 
Donor centers  responding  to our survey identified three major obstacles to recruitment 
of minorities  to the national  registry: 
Lack  of awareness  of marrow  donation among minorities 
Mistrust  of marrow  domtion  among minority  groups 
Language  and/or  cultural  barriers 
The NMDP has developed  strategies  to overcome  these obstacles.  Each of these 
strategies,  however,  contains  some vulnerabilities  that may limit their effectiveness. 
Publications.  Eighty-six  of the 88 donor centers  responding  to our survey  report  that 
they are using  materials  prepared  by NMDPto increase  awareness  and decrease 
mistrust  about marrow  donation  among minorities.  However,  during  our site visits, 
donor center  and recruitment  group staff raised concerns  about these materials 
sensitivity  to local conditions  and,  in some cases,  the accuracy  of translation. 
Recruitment  Groups.  Thirty-nine  of the 88 donor centers  responding  to our survey 
reported  that they work with NMDP-accredited recruitment  groups as one way of 
overcoming  language  and cultural  barriers.  Seventeen centers  reported  that they rely 
on these recruitment  groups for more than half of their minority  recruitment.  Despite 
turning  to recruitment  groups to play a major role in recruiting  minority  donors, 
NMDP does not have in place performance  indicators  to measure  their ongoing 
effectiveness. 
ii  RECOMMENDATIONS 
Performance  Indicators  for Donor Centers.  Inthe  next contract,  the Health  Resources  and 
Services  Administration  should require  that the National  Marrow  Donor  Program  develop 
and implement  performance  indicators  that measure  the progress  of individual  donors  centers 
in recruiting  donors  from racial  and ethnic minority  groups.  We urge that these  indicators  be 
implemented  within the first year of the new contract. 
Performance  Indicators  for Recruitment  Groups.  In the next contract,  the Health 
Resources  and Services  Administration  should require  that the Natioml  Marrow  Donor 
Program  develop  and implement  performance  indicators  that measure  the accomplishments  of 
recruitment  groups.  We urge that these indicators  be implemented  within the f~st  year  of 
the new contract. 
Contingency  Plans.  The HRSAshould identify steps to be taken should the NMDPcontinue  to 
fall short on the recruitment  goals specified  in its current  contract,  as occurred  among 
Hispanic  donors  in the first year. 
Sharing Effective  Practices.  The NMDPshould draw on the expertise  of those donor centers 
and recruitment  groups that have succeeded  in recruiting  minority  donors  as one way of 
providing  assistance  to other donor centers. 
COMMENTS  ON THE DRAFT REPORT 
The Health  Resources  and Services Administration  (HRSA),the Assistant  Secretary  for Health 
(ASH), and the National  Marrow  Donor Program  (NMDP)commented  on the draft  report. 
HRSA concurs  with our recommendations  regarding  performance  indicators,  except  that the 
agency believes  it is not possible to implement  these indicators  before  signing the next 
contract.  We agree  that more time might be needed.  We changed  our recommendations  to 
require  the NMDP to develop  and implement  these indicators  in the next contract.  We 
continue  to believe  that developing,  implementing,  and enforcing  performance  standards  for 
recruitment  of donors  from minority  groups and for performance  of recruitment  groups  are 
important,  and need to be accomplished  as quickly as possible. 
NMDPS comments  were  similar to HRSAS. In our view,  all donor centers  have a role to play 
in improving  the chances  for minority  patients  awaiting  transplant  to find a donor.  For this 
reason,  we recommend  some type of linkage between  recruitment  goals and the minority 
population  in each donor centers  service area. 
The Assistant  Secretary  for Health  comments  that the recommendations  contained  in this 
report  are important  and should be implemented  as quickly  as possible.  We have changed 
the language  in the report  in several places  as ASHrecommends. 
...
111  TABLE  OF  CONTENTS

EXECUTIVE  SUMMARY

INTRODUCTION  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1

FINDINGS  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...4


increase  inrninoritydonors  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...4


Minol-ity representationon  donorlists  . . . . . . . . . . . . . . . . . . . . . . . . . . ..7


obstacles  torninority  recruitment  . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...9

.Strategies  forrninority  recruitment  . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  11

RECOMMENDATIONS  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  13

COMMENTS  ON THE DRAFI REPORT  . . . . . . . . . . . . . . . . . . . . . . . . .  15

APPENDICES

A:  Survey Results  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..A-1

B:  Methodology  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..B-l

C:  Textofcornments  onthedraft  report  . . . . . . . . . . . . . . . . . . . . . . . . . ..C-1

D:  Endnotes  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..D-l
 INTRODUCTION 
PURPOSE: 
To assess the performance  of the National  Marrow  Donor Program  in increasing  the 
representation  of potential  donors  from racial  and ethnic minority  groups on the registry  of 
volunteer  unrelated  marrow  donors. 
BACKGROUND: 
Bone Marrow  Transplantation 
Bone marrow  transplantation  is a treatment  for blood borne diseases such as leukemia  and

lymphoma.  About  16,000 people  are diagnosed  each year with leukemia  and other  fatal

blood diseases. 1  Many of these people could benefit from a bone marrow  transplant,  a

procedure  in which the patients  diseased bone marrow  is destroyed  and marrow  from a

healthy  donor  is infused  into the patients  blood stream.  Bone marrow  produces  platelets,

red blood  cells,  and white blood cells,  the agents of the bodys immune system.  For  a bone

marrow  transplant  to be successful,  the patients  and donors  antigens must match  as closely

as possible.  About  30 percent  of the time the patient has a sibling with matching  antigens.

In the other  70 percent  of cases the patient must seek an unrelated  donor.

Three  pairs  of blood cell proteins,  known as the Human Leukocyte  Antigen  (HLA)-A,

-B and -DR, are important  in determining  whether  a match will be successful.  One antigen  in

each pair  is inherited  from an individuals  mother,  the other from the father.  Because there

are numerous  antigens  at each HLA-A,-B, -DR locus,  more than 600 million combinations  are

theoretically  possible.2

The National  Marrow  Donor Program 
The National  Marrow  Donor Program  (NMDP)is a non-profit  organization  based  in 
Minneapolis,  Minnesota.  The NMDPoperates  the Congressionally  authorized  marrow  donor 
registry  under  contract  with the Health Resources  and Services Administration  (HRSA). The 
contract  is funded  at $40,471,000,  from July 1994 through  April  1997. 
The registrys  major  functions  are to: (1) establish a system for finding marrow  donors 
suitably matched  to unrelated  recipients  for bone marrow  transplantation;  (2) recruit  potential 
donors;  and (3) increase  the representation  of individuals  from racial  and ethnic minority 
groups  in order  to enable  an individual  in a minority  group,  to the extent practicable,  to have 
a comparable  chance  of finding a suitable unrelated  donor as would an individual  not in a 
minority  group. 3 
The  NMDP began  operations  in September  1987 as a non-profit  organization  funded through  a 
contract  from  Office of Naval Research.  The NMDPwas created  through  a cooperative  effort 
of the American  Association  of Blood Banks, American  Red Cross,  and Council  of 
1  Community  Blood Centers.  The NMDPbegan search operations  with  10 transplant  centers, 
49 donor centers  and 8,000 donors listed on the registry.  As bone marrow  transplantation 
came to be seen as viable technique,  the U.S.  Navy recognized  that it was inappropriate  for 
the military  to maintain  a civilian  registry.  In 1989, responsibility  for the contract  was 
transferred  to the National  Heart,  Lung,  and Blood Institute  in the National  Institutes  of 
Health.  Contract  oversight  for the NMDPwas again transferred  in 1994 to HRSAin 
recognition  that NMDPwas a service delivery  program,  rather  than a basic research  initiative. 
Donor Recruitment 
Recruiting  volunteer  donors,  particularly  minority  donors,  is a major  responsibility  of the 
registry.  The NMDPaccredits  local donor centers  that recruit  volunteers  to join  the registry. 
As of October  1995, the registry  contained  almost  1.5 million  donors  in 97 domestic  donor 
centers,  and an additional  450,000  donors from 6 foreign  centers.  Eighty-one  of the 
domestic  centers  are blood centers,  either Red Cross-affiliated  or part of community  blood 
centers;  13 centers  are departments  of hospitals,  and 3 are free-standing  centers.  Six of the 
domestic  centers  have more than 50,000  donors on their  list; another  35 centers  have 
between  10,000 and 50,000  donors each.  The remaining  56 centers  have fewer than  10,000 
donors. 
The  NMDP also has accredited  11 recruitment  groups to help recruit  donors.  Because of their 
ties to particular  segments of the local community,  recruitment  groups theoretically  are able 
to recruit  donors  from those segments with more success than donor centers.  Upon 
recruiting  a potential  donor,  the recruitment  group must  turn over  the donors  it has 
recruited  to the donor  center  with which it works.  In the event that one of these donors  is 
needed for further  testing  leading to actual donation,  the affiliated  donor center  is responsible 
for all contact  with the donor. 
Issues in Mhority  Recruitment 
Even with a registry  of 1.5 million donors,  it remains  difficult  for minority  patients  to find 
matching  donors.  This problem  is particularly  acute for African-Americans,  due to the 
increased  number  of HLA combinations  occurring  in this group.  Consequently,  the 
legislation  establishing  the registry  requires  it to increase  the representation  of individuals 
from racial  and ethnic minority  groups  ... in order to enable  an individual  in a minority 
group,  to the extent practicable,  to have a comparable  chance  of finding  a suitable unrelated 
donor as would an individual  not in a minority  group.4  Of the 3,198  transplants  that the 
NMDP has facilitated  since it began operations  in September  1987, less than  10 percent  were 
for minority  patients. 
Previously,  the Office of Inspector  General  examined  racial  disparities  in access to domted 
solid organs  (The Distnbution of Organs for  Transplantation:  Expectations  and Practices, 
OEI-01-89-00550,  March  1991).  In that report,  we found that blacks on kidney waiting  lists 
wait almost twice  as long as whites for a first transplant.  There  has been some improvement 
in access to organs  among minorities.  In 1994, 39 percent  of recipients  of cadaveric  kidneys 
were minorities,  versus  35 percent  in 1988.  The percentage  of cadaveric  kidney  donors  who 
2  were minorities  increased  in that same time period  from  16 percent  to 22 percent.5 
Bone marrow  transplantation  differs  from solid organ transplantation  in many important 
respects.  However,  both procedures  require  compatibility  in donor and recipient  human 
leukocyte  antigens  to improve  chances  for a successful match.  Because the combimtion  of 
blood cell proteins  tends to follow racial  and ethnic  lines,  a patient has the best chance  of 
finding an appropriate  donor from within his or her own racial  group. 
In a 1992 report,  the General  Accounting  Office (GAO)found that the proportion  of black  and 
Hispanic  potential  donors for marrow  domtion  still lagged considerably  behind their 
proportions  in the U.S.  population.  The GAOrecommended  that for the NMDPto achieve  its 
goal of a representative  racial  and ethnic distribution,  the NMDPwould have to at least double 
the proportion  of blacks and Hispanics  on the Registry.G 
SCOPE AND METHODOLOGY: 
This report  addresses  the 97 domestic  donor centers.  The report  is one of four companion 
reports  addressing  the National  Marrow  Donor Program.  The other three reports  are: 
National  Marrow  Donor  Program:  Effectiveness  in Retaining  Donors  (OEI-01-95-00121); 
National  Marrow  Donor  Program:  Geographic  Overlap Among Donor  Centers (OEI-Ol-95-
00122);  and National  Marrow  Donor Program:  Financing Donor  Centers (OEI-Ol-95-
00123). 
This report  is based on five primary  data sources: 
1)  The NMDPSregistry  statistics  extending  over a two and one-half year period,  from  April, 
1993 through  October,  1995. 
2)	 A mail survey  of the 97 domestic  donor centers.  We received  88 responses,  a response 
rate of 91 percent. 
3)  1990 U.S.  Census  Data at a county  level. 
4)	 The NMDPSDonor  Center  Access Directory,  in which each donor center  displays  a map 
of the geographic  area that it covers. 
5)  Site visits to donor centers and recruitment groups in California, Massachusetts, 
Minnesota,  New Jersey,  North Carolim,  and South Carolim. 
Appendix  B provides  a more detailed  description  of our methodology. 
We conducted  this study in accordance  with the Quwlity Standards for  Inspections  issued by 
the Presidents  Council  on Integrity  and Efficiency. 
3
 FINDINGS 
THE NUMBERANDPROPORTIONOFDONORSONTHEREGISTRYFROMRACIALANDETHNIC 
MmORITY GROUPSHASGROWNSUBSTA
NTIALLY. HOWEVER,THE PROPORTIONOF BLACK
DONORSANDHISPANICDONORSSTILLFALLSSHORTOF THEIRREPRESENTATIONIN
  THE 
U.S.  POPULATION. 
	 In the two and one-half years  between April  1993 and October 1995,  the number  of 
donors from  racial and ethnic minority groups increased  by 180 percent,  from 
127,663  to 356,420.  Minority  donor representatzonon the regtstrygrew from 
17 percent  to 25 percent. 
The NMDP tracks  five broad  racial  and ethnic categories  of donors:  White,  black,  Hispanic, 
Asian/Pacific  Islander,  and American  Indian/Alaska  Native donors.7  The NMDPconsiders 
the non-white  donors  to be minority  donors.  The total number  of donors on the registry 
grew by 91 percent,  from 757,769  to 1,447,324,  in the two and one-half  years between  April 
1993 and October  1995.  Minority  donors accounted  for about one-third  of that increase. 
The number  of white donors  increased  by 77 percent,  from 595,942  to  1,054,396. 
Pigmel 
InawseitlMiMityDculoIaoNnh iDPRegiScAy@,  1993tooctobe1r995 
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In our site visits to donor centers  and NMDPheadquarters,  we heard  of two overarching 
reasons  for the growth  of minority  donors on the registry.  The first reason  is a general 
emphasis  on the need for more minority  donors in order  to make bone marrow 
transplantation  available  to patients  from minority  groups.  One way in which the NMDP 
promotes  awareness  is through  national  campaigns  directed  at specific minority  groups.  The 
NMDPhas launched  two such campaigns  thus far,  one targeted  at black donors  and the other 
4  targeted  at Asian/Pacific  Islander  donors. 8  The NMDPalso emphasizes  the need for a 
diverse  registry  through  promotional  literature  and brochures  aimed at the general  public. 
The second reason  for the growth of minority  donors on the registry  is the financial 
incentives  built into the system.  A grant from the Department  of Navy pays for tissue typing 
of minority  donors.  White donors who wish to volunteer  for the registry  must pay the cost 
of tissue typing themselves,  or through  privately  generated  funding.  These typically  range 
from $4S to $60 for the initial HLA-A and -B typing. 
More recently,  the NMDPhas begun paying donor centers  a higher fee for recruiting  minori~ 
donors than for white donors.  The NMDPpays the 62 donor centers  reimbursed  on a fee-for-
service basis $28 for each new minority  donor and $10 for each new white donor.  The other 
35 donor centers,  which are funded on contract  basis,  have finds  earmarked  for minority 
recruitment  staff. 
.	 l%e NMDP  reached  the goals specified  in its contract  with HRSA regarding  minority 
recruitment for  the year May 1994-April  1995,  with the exception  of Hispanic 
recruitment,  where it fell  short by about 20 percent  (7,000 donors). 
The NMDPS3-year contract  with HRSAstipulates that  150,000 new donors must be recruited 
annually.  At least 30,000  of these new donors should be black,  18,800 should be Asian/ 
Pacific  Islander,  and 32,000  should be Hispanic.  The contract  does not specify an annual 
recruitment  goal for American  Indian/Alaska  Natives.  Table  1 compares  the level of NMDP 
minority  recruitment  with HRSArecruitment  goals.  The table also presents  data on 
recruitment  for the first half of this second contract  year. 
Table 1 
MINORITY GtMIS  smtmxED  IN HRSA CONTRACT 
Numberofdonors 
Numberofdonors  Difference  recruitedby NMDP 
Racial/EthnicGroup  recruitedby  Annualrecruitment  betweenthe HRSA  betweenMay 1, 
NMDP 
betweenMay 1,  levelspecifiedin  contractandthe  1995andOctober 
1994andApril30,  the HRSA contract  actuallevelof  31, 1995 
1995  recruitment 
Blacks  38,275  30,000  8,275  20,183 
Asian.iPacific  22,492  18,800  3,692  14,194 
Islanders 
Hispanics  25,147  32,000  (6,853)  17,183 
AllDonors  288,989  150,000  138,989  142,109 
DataSource:  RegistryStatistics,April 1994throughOctober1995. 
NMDP 
Analvsis: Officeof InsuectorGeneral(OIG). 
5
 The absence  of a natioml  campaign  targeted  on Hispanic  donors may provide  one 
explanation  for NMDPSlimited  success in recruiting  Hispanic  donors as compared  to their 
success with donors  from  other minority  groups.  However,  the NMDPreports  that plans are 
underway  for a national  campaign  that targets  Hispanic donors in four areas of the country.9 
.	 As of October  1995,  blacks comprised  9 percent  of donors on the re~stry (vs. 
12 percent  in the general population),  and Hispanics  comprised  8 percent  of donors 
on the re~stry (vs. 9 percent  in the general populahon).  These propo~ons 
represent  substantial  increases, from  5 percent for  blacks and 6 percent for 
Hispanics  in April  1993. 
As figure 2 depicts,  the proportion  of Asian/Pacific  Islanders  and American  IndiatiAlaska 
Natives  on the registry  already  exceeds their proportion  in the population.  Asian/Pacific 
Islanders  account  for 6 percent  of the donors on the registry  (vs. 3 percent  in the general 
population);  American  Indian/Alaska  Natives account for 2 percent  (vs.  1 percent  in the 
population). 
Flgurc2 
M@&~bm~PR@@V 
15% 
14% 
13% 
1993 
12% 
1995 
11% 
10%  1990 
9% 
8% 
7% 
6% 
5% 
4% 
3% 
2% 
1% 
o% 
Blsck - w  ~-
Ahsb Native 
LshIMkz 
For this amlysis  we compared  the percent  of minority  representation  in the registry  with 
1990 U.S.  population  census data.  This analysis is conservative  for two reasons.  First,  the 
number  of blacks  and Hispanics  may be under  represented  in the  1990 U.S.  census. 10 
Second,  because  of the 5-year  gap between the  1990 census and the  1995 NMDPstatistics, 
minorities  may account  for an even higher proportion  of the U.S.  population  today.  As a 
result,  the disparity  between  the proportion  of minorities  on the registry  vs. those in the U.S. 
population  may be even wider than reported  here. 
6
 Even asdonor  centers 'recmi~ent  ofminorities  has increased,  the overall  retention  rate 
for  these donors has remained  about the same.  However,  retention  rates among  donors 
from  racial  and ethnic minority groups continue to lag behind those for  whites. 
Retention  ofmtiority  donors at first level follow-up testing  (DRtyping)  improved  to 
F	
66 percent  for the year ending September  1995, up from 55 percent  for the year 
ending  September  1993. 
F	 However,  retention  ofminori~donors  atsecond  level follow-up  testing  (cTtestkg) 
declined  to60percent  for the year ending September  1995, down from 67 percent  for 
theyear  ending  September  1993. 
Donor  retention  rates measure  the proportion  of donors  who proceed  to followup  testing, 
when their  names appear  as potential  matches.  Inour  companion  report,  National  Marrow 
Donor  Program:  Effectiveness  in Retaining Donors  (OEI-01-95-O012 1), we examine  donor 
retention  in detail. 11 Among white donors,  the retention  rate at DR was 76 percent  for the 
year ending  September  1995; the CT retention  rate was 81 percent. 
As we discuss  in the companion  report,  a likely important  explamtion  for the increase  at DR 
testing  and decline  at CT testing  is the recently  initiated-practice  of DR-typing virtually  all 
minority  donors  at registration.  As a result,  the difficulties  associated  with contacting  and 
obtaining  permission  for donors that previously  were found at DR-typing are now arising  at 
CT. 
The lower  retention  rate among minority  donors has important  implications  for recruitment  of 
donors  from these groups.  The large number  of HLAcombinations  among  some minority 
groups makes  it difficult  for patients  from these groups to find a matching  donor;  in itself, 
this means that donors  from these groups need to be over-represented  on the registry  to 
provide  an equitable  chance of finding a match.  Second,  the lower retention  rate means that 
an even greater  number  of donors from these groups is needed in order  to find a match  who 
is willing  to proceed  all the way to actual marrow  collection  and transplant. 
FEW DONOR CENTERS HAVE A PROPORTIONOF MINORITYDONORSTHATEQUALSOR 
EXCEEDSTHE PROPORTIONOF MINORITIESLIVINGIN THEIR SERVICEAREA. 
. As of October 1995,  74 of the 97 donor centers had a smaller propotion  of 
Hispanics  on their lists than reside in their service areas.  Sixty-five  donor  centers 
had a smaller propotion  of black donors than reside in their service  areas. 
We compared  the service  area of each donor center  at the county level with county  level 
population  data from the  1990 U.S.  Census. 12 We then compared  the percent  of minori~ 
donors  on each donor  centers  list with the percent  of minority  donors  residing  in their 
service  area.  Table 2 (following page) depicts the number  of donor centers  falling  short of 
or exceeding  the proportion  of minorities  in their service  area. 
7
 Table 2 
DONOR  CENTERS  IN WHICH  THE PROPORTION  OF MINORITIES  ON THEIR  LISTS  EXCEEDS 
OR FALLS  SHORT  OF THEIR  REPRESENTATION  IN THE LOCAL  SERVICE  AREAS 
Numberof donorcenterswith  Numberof donorcenterswith 
Ethic  andRacialGroup  listsfalling shoti ofthe  listsexceedingtheproportion 
proportionof minoritiesin their  of minoritiesin their service 
serviceareas  areas 
Hispanic
 74  22 
Black
 65  31 
Asian/PacificIslander
 38  58 
AmericanIndLm/AlaskaNative
 31  65 
N=96 DonorCenters. ExcludesU.S.NavysBillYoungMarrowDonorCenterbecauseofthatcenters 
uniquefocuson militarypersomel worldwide. 
DataSource:NMDPRegistryStatisticsfor October31, 1995;donorcenterserviceareasdefinedin 
NMDPsDonorCenterAccessDirectoryfor October,1995;and 1990U.S. CensusPopulationData. 
Analvsis:Officeof InmectorGeneral(OIG). 
We further  amlyzed  the donor centers  lists to determine  the extent to which centers  fall 
short on minori~  recruitment.  Our analysis  shows that 27 donor centers  had lists which 
reflected  less than half the percentage  of Hispanics  in their  service areas.  Thirty  donor 
centers  had lists which reflected  less than half the percentage  of blacks  in their  service  areas. 
Twelve  donor centers  had lists which reflected  less than half of the percentage  Asian/Pacific 
Islanders  in their  service  areas,  and seven donor centers  had lists which reflected  less than 
half of the American  IndiadAlaska  Natives  in their  service  areas. 
Our analysis  revealed  that  11 donor centers  had lists which fell short of the proportion  of 
minorities  in their  service  area for all 4 minority  groups.  Five centers  had donor  lists which 
reflected  or exceeded  the proportion  of all minority  groups  in their service  area.  We did not 
fmd anything  particular  about either  of these two groups.  However,  in our companion  report 
National  Marrow Donor  Program:  Financing Donor  Centers (OEI-01-95-O0123),  we report 
that contract  centers  are more likely than fee-for-service  centers  to have a proportion  of 
minorities  that equals  or exceeds the proportion  of minorities  that reside  in their  service 
areas. 
. The distnbution of minority  donors is concentrated  in a few  donor centers.  As of 
October 1995,  12 of the 97 donor centers account for  more than 50 percent  of all 
donors from  minority  groups. 
These same  12 centers  accounted  for 42 percent  of all donors on the registry.  Eight  of these 
donor centers  are large,  with donor  lists of over 20,000.  The other four have smaller  lists 
8  but are in areas of the country  with high numbers  of minority  populations. 
Ouranalysis  of these  12centers  showed significant differences  between these  12 centers  and 
other 76 centers  responding  to our survey in two areas:  use of minority  staff and use of 
bilingual  staff.  According  to self-reported  survey data,  all 12 of these centers  employ 
minority  staff (vs. 45 of the other 76 donor centers).  In 11 of the  12 centers,  staff and 
volunteers  speak a second language  (vs. 24 out of the other 76 donor centers). 
	 Despite  the attention  being @vento recruitment  of donors from  minority  groups,  the 
NMDP does not have in place performance  indicators  to measure  individual  donor 
centers progress  in recruiting  minorities. 
The  NMDP has developed  nine Continuous  Process  Improvement  (cPI) indicators  in five areas 
to measure  the performance  of its donor centers.  The CPI indicators  monitor  how quickly 
donor centers  register  new donors  and how effective donor centers  are at retaining  donors. 
Staff at the NMDPtold us that the indicators  are designed to measure  only those variables  that 
a donor center  can control.  Given the attention  on minority  recruitment,  we find striking  the 
absence  of a CPI indicator  measuring  any aspect of minority  recruitment. 
DONOR CENTERS RESPONDINGTO OUR SURVEY IDENTIFIEDTHREEMAJOROBSTACLESTO 
RECRUITMENTOF MINORITIESTO THE NATIONALREGISTRY: 
  Luck of awareness  of marrow don~on among minorities 
In their  survey  responses,  98 percent  of the donor centers  and all 11 recruitment  groups 
called  lack of awareness  of marrow  donation among minorities  an obstacle.  On our site 
visits to donor  centers  and recruitment  groups,  staff told us that bone marrow  donation  tends 
to receive  less attention  from the leadership  in minority  communities  than in white 
communities.  One possible  explanation  for the lack of awareness  among minorities  may be 
that they see little applicability  to their lives,  or to the lives of minority  patients because 
minority  patients  have received  a smaller  share of bone marrow  transplants. 
In addition,  patients  from minority  groups are less likely to have success as they progress 
through  the process  from  initiating  a preliminary  search for a donor to actual transplantation. 
Black patients,  for example,  initiated  8 percent  of prelimimry  searches,  but received  only 3 
percent  of transplants.  Table  3 (following page) depicts the percentage  of known ethnic  and 
racial  groups  who initiated preliminary  searches and who received  transplants  from the 
beginning  of the NMDPprogram  in December  1987 through  October  1995. 
9  Table 3 
NUMBEORF SEARCHES  AND TRANSPLANTS  FOR PATHINTS  FROM  ALL  RACIAL  AND ETHNIC 
GROUPS  FROM  DECEMBER  1987THROUGOHC  TOBE1R9 95
EthnicandRacial  Preliminary  Percentof  Numberof  Percentof 
Group  Searches  Preliminary  Transplants  transplants* 
Searches* 
White  18,265  83%  3,259  91% 
Hispanic  1,422  6%  169  5% 
Black  1,675  8%  104  3% 
Asian/PacificIslander  654 3%  49  1% 
American  104  < 1%  19  <  1% 
Indian/AlaskaNative 
Other,unknown  3,139  *  275  * 
Totals:  25,259  3,875 
* Searchesandtransplantsforpatientswhoseraceis unknownare excludedfromthesepercentages, 
whichare calculatedon denominatorsof 22,12f0or preliminarysearchesand 3,600 for transplants. 
Source: NMDPRegistryStatisticsforOctober1995.

Analysis: Officeof InspectorGeneral(OIG).

Note: Thesedataincludesearchesandtransplantsform donorcenters,bothforeignanddomestic.

.  Mistrust  of marrow  donatzonamong minority groups 
In their  survey  responses,  94 percent  of the donor centers  and  10 out of 11 recruitment 
groups called  mistrust  of marrow  donation  among minority  groups  an obstacle.  For 
~xarnple,  donor center  and recruitment  group staff told us during  site visits that mistrust  of 
Western  medicine  can be a problem  in Asian communities.  Their  resistance  stems from  a 
fear of strangers,  and in particular  fear of doctors.  Another  issue donor centers  confront  is 
distrust  of the medical  establishment.  The donor centers  we spoke with told us that they try 
to reach  out to minority  groups;  however,  access to minority  establishments  (e. g.,  churches, 
fraternal  organizations,  or cultural  centers)  can be a problem  if donor  center  staff do not 
have a personal  link to a particular  establishment. 
.  Language  and/or  cultural barriers 
Eighty-six  percent  of donor centers  and 10 out of 11 recruitment  groups called  language 
and/or  cultural  barriers  an obstacle.  Specific examples  of cultural  and language  barriers  we 
learned  about during  our site visits include: 
F	 The Vietnamese  believe that spinal cord contains  vital life fluids.  If the fluid is 
removed,  a person  may become  crippled  or unable  to bear children. 
10
 	 While  36 donor centers  reported  in the survey that they employ bilingual  staff and 
volunteers,  we were told that it is difficult to find people fluent enough  in both 
languages  to explain  complex  medical  terms. 
THE NMDPHAS DEVELOPED STRATEGIES TO OVERCOME  THESE OBSTACLES. EACH OF 
THESE STRATEGIES,HOWEVER,  CONTAINS SOME VULNERABILITIESTHAT MAY LIMIT 
THEIR EFFECTIVENESS. 
	 NMDP  Publications.  Eighty-six  of the 88 donor centers responding  to our survey 
report that they are using materials prepared  by NMDP to increase awareness  and 
decrease  mistrust  about marrow  donahonamong minorities. 
The  NMDP has  developed  a variety  of promotioml  materials,  including  pamphlets,  posters 
and  videos.  Most  of these  hems  are  customized  for  different  ethnic  and  minorhy 
communities. 
In addition  to the NMDPmaterials,  34 (39 percent)  of the donor centers  reported  developing 
their own educatioml  materials  specifically  for minority  donors.  Thirty-six  (41 percent)  of 
the donor centers  reported  using educational  materials  developed  by other donor centers  for 
minority  donors. 
	 However,  during our site visits,  donor center and recruitment  group staff 
raised concerns about these matenals sensitivity  to local conditions  and,  in 
some cases,  the accuracy  of translation. 
The staff members  we spoke with on our site visits pointed  out that a recruitment  strategy 
changes  with the target  market.  Subtle differences,  such as whether  the donor  lives on the 
east or west coast,  can effect the donor centers  or recruitment  groups marketing  strategy. 
Staff told us that although they fmd NMDPmaterials  useful,  the generic  materials  are less 
effective  than ones that are tailored  to local needs and concerns. 
We also heard  that materials  origimting  from NMDPheadquarters  can be inaccurate.  Staff at 
one recruitment  group pointed  to a brochure  in Vietmmese  that had more than 20 mistakes. 
. Recruitment  Groutm.  Thirty-nine  of the 88 donor centers responding  to our survey 
reported  that they work with N~DP-accredited recruitment  groups as one way of 
overcoming  language  and cultural bamers.  Seventeen  centers reported  that they 
rely on these recruitment  groups for  more than half of their minority  recruitment. 
The NMDPsponsors  11 recruitment  groups to help recruit  minority  donors. 13 To date,  these 
11 recruitment  groups  have recruited  60,657  new donors,  or slightly less than 4 percent  of 
the NMDPregistry.  Of these  11 groups,  1 focuses on Hispanic  donors;  3 on Asian/Pacific 
Islander  donors;  2 on black donors;  the rest are general  in their orientation. 
The 39 donor  centers  that work with recruitment  groups reported  mixed experiences.  Staff 
at some donor  centers  responded  with statements  such as recruitment  groups effectively 
11  bridge  the cultural  gap.   Staff at other donor centers told us that  we work better  without 
them  and that  it requires  too much work to jointly  handle a drive.   Throughout  our site 
visits it became  apparent  that for donor centers  with on-going relationships  with recruitment 
groups,  the experience  could be positive,  resulting  in increased  access to minority 
communities.  However,  it also became  apparent  that many donor center  and recruitment 
group  staff were unclear  on exactly how to work together.  Typically  contentious  issues 
include  who should monitor  drives  and how should fees be split. 
Importantly,  the reimbursement  system appears to have a significant  effect on the extent  to 
which donor  centers  hold drives together.  The 62 donor centers  reimbursed  by NMDPon a 
fee-for-service  basis receive  a fried  amount for each donor they recruit  ($10 for each white, 
$28 for each person  from a racial  or ethnic minoriw).  Because these recruitment  fees are the 
fmncial  base of any fee-for-service  donor center,  the incentive  to be the sole sponsor  of a 
drive  is very  strong.  Sharing recruitment  fees has a direct,  negative  impact on any of these 
donor centers  bottom  line. 
F	 Despite  turning to recruitment  groups to play  a major role in recruiting 
minority  donors,  NMDP does not have in place pe~ormance  indicators  to 
measure  their ongoing  effectiveness. 
The performance  of NMDPdonor centers  is assessed every month using CPI indicators. 
Because  no comparable  indicators  exist for recruitment  groups,  the NMDPhas no on-going 
way to measure  their  activities.  Just as donor centers must be measured  on aspects  they can 
control,  the recruitment  groups feel that the same policy  should hold if CPI-type indicators 
are instituted. 
Some donor  center  staff told us that the current  system of performance  measurement  unfairly 
penalizes  donor  centers  that work with unreliable  recruitment  groups.  Once the donor  is 
handed over to the donor center,  that donors performance  becomes part of the donor 
centers  CPI indicators.  One donor center  we visited had a fairly large donor  list,  a fifth of 
which came  from  a now-extinct  recruitment  group.  When they f~st  acquired  donors  from 
that group  their  CPI indicators  showed that as many as 70 percent  of their donors  failed  to 
come forward  for followup  testing. 
12
 RECOMMENDATIONS 
Since its inception  in 1987, the National  Marrow  Donor Program  (NMDP)has come a long 
way in increasing  the proportion  of minority  donors on the registry.  Minority  donors 
accounted  for about 6 percent  of the registry  in December  1989.14 Today,  minority  donors 
represent  25 percent  of the donors on the registry. 
However,  our fiidings  from this report  show that the NMDPneeds to continue  and build upon 
the progress  made to date in recruiting--and  retaining--donors  from racial  and ethnic  minority 
groups.  We raise these concerns  because the current  racial  and ethnic  distribution  of the 
registry  does not appear  to meet the requirements  of the Transplant  Act:  that a patient  in a 
minority  group have a comparable  chance of finding an unrelated  donor  as a patient  who is 
not in a minority  group. 
We developed  our recommendations  to encourage  1) further  improvement  in minority 
recruitment  and 2) the development  of performance  indicators  for monitoring  minority 
recruitment.  We believe  that effectively  carrying  out our recommendations  will require  a 
partnership  approach  between  HRSAand NMDP,and between  NMDPand its donor  centers. 
Consequently,  we direct  our recommendations  to both HRSA,in its role as contractor  for the 
registry,  and to NMDP,as the holder  of that contract. 
PERFORMANCE  INDICATORS FOR DONOR CENTERS. In the next contract,  the Health 
Resources  and Services  Administration  should require that the National  Marrow  Donor 
Program  develop and implement  performance  indicators that measure the progress  of 
individual  donors centers in recruiting  donors from racial and ethnic minority  groups. 
We urge that these performance  indicators  be implemented  within the first year of the new 
contract.  Donor  centers  falling short on these indicators  should be subject to disciplimry 
actions,  up to and including  withdrawal  of their participation  agreement  with the NMDP. 
We offer the following  options as indicative  of approaches  that might be considered.  We 
encourage  HRSAand the contractor  to develop  additional  ideas to implement  our 
recommendation  of establishing  minority  recruitment  goals as a way to improve  access to 
transplantation  for members  of racial  and ethnic minority  groups. 
.	 A reasomble  beginning  expectation  would be that the proportion  of minority  donors 
on a centers  list must reflect,  at a minimum,  the proportion  of minority  donors 
residing  in its service  area. 
	 The  HRSA and  NMDP could  choose  to be more  aggressive  and  give  additional  impetus 
to minorhy  recruhment  by  requiring  that  a donor  centers  list  must  exceed  by some 
factor  the  proportion  of minority  donors  in the  local  service  area. 
.	 An alternative  approach  would require  that donor centers  recruit  some specified 
percentage  of the minority  populations  living in their  service  area.  Rather  than peg 
that percentage  to the donor centers  list, as our previous  option does,  this approach 
13  would,  in effect,  set a target  number  of donors from minority  groups.  That target 
number  would be based on the number  of minority  residents  living in the centers 
service  area. 
PERFORMANCE  INDICATORS FOR RECRUITMENT GROUPS. In the next contract,  the Health 
Resources  and Services  Administration  should require that the National  Marrow  Donor 
Program  develop  and implement  performance  indicators that measure the 
accomplishments  of recruitment  groups.  We urge that these performance  indicators  be 
implemented  within the first year of the new contract.  Recruitment  groups falling  short on

these indicators  should be subject to disciplinary  actions,  up to and including withdrawal  of

their participation  agreement  with the NMDP.

Just as the NMDPmeasures  donor centers  on aspects they can control,  the recruitment  groups

should also be measured  on aspects of the recruitment  process that they can control.

Possible performance  indicators  for recruitment  groups include:

	 Tracking  the percentage  of donors recruited  by each recruitment  group that are 
retained  at subsequent  attempts  to contact them in the donation process. 
	 Measuring  the time it takes each recruitment  group to return  consent forms to the 
appropriate  donor  center. 
.	 Monitoring  the number  of forms that are properly  filled out by each recruitment 
group. 
CONTINGENCY PLANS. The HRSA should identify steps to be taken should the NMDP 
continue  to fall short on the recruitment  goals specified  in its current  contract,  as 
occurred  in the first year among Hispanics.  We urge the NMDP to continue  with  its plans 
for  a campaign  focused  on Hispanic  donors.  If performance  indicators  for  recruhrnent 
groups  show  that  they  are  indeed  an effective  recruitment  source,  the  HRSA and  NMDP might 
want  to consider  accrediting  and/or  funding  more  groups  focusing  solely  on Hispanic  donors. 
We  also  encourage  HRSA to consider  speci&ing  recruitment  goals  in the  contract  for 
American  Indians/Alaska  Natives. 
SHARINGEFFECTIVE PRACTICES. The NMDP should draw on the expertise  of those donor 
centers  and recruitment  groups that have shown success in minority  recruitment  as one 
way of providing  assistance  to other donor centers in their minority  recruitment  efforts. 
These donor centers and recruitment groups could assist  the  NMDP in planning  and  executing 
national  campaigns,  in providing  contacts  to national  minority  organizations,  and  in creating, 
editing,  and  pretesting  foreign  language  educatioml  materials.  The  NMDP could  also  draw  on 
their  expertise  in designing  cultural  competency  training,  improving  bilingual  capacity, 
developing  family  education  strategies,  and  mamging  multiracial  drives. 
14
 COMMENTS  ON  THE  DRAFT  REPORT 
We sought comments  on the draft report  from the Health Resources  and Services 
Administration  (HRSA),the Assistant  Secretary  for Planning  and Evaluation  (ASPE),and the 
Assistant  Secretary  for Health  (ASH). In addition,  HRSArequested  comments  on the report 
from the National  Marrow  Donor Program  (NMDP). 
HRSA concurs  with  our  recommendations,  with  the  exception  that  the  agency  believes  that  it 
is not  possible  to  implement  performance  indicators  before  signing  the  next  contract.  HRSA 
expects  to  issue  the  request  for  contract  to operate  the  registry  in December  1996,  with  a 
contract  award  expected  by  April  30,  1997.  Our  goal  in recommending  the  adoption  of 
performance  indicators  prior  to awarding  the  next  contract  was  to convey  the  urgency  with 
which  this  issue  needs  to be addressed.  We  strongly  urge  HRSA and  the  NMDP to move  with 
utmost  speed  to develop  such  indicators,  as a way  of increasing  the  chance  for  donors  from 
racial  and  ethnic  minority  groups  to find  matching  donors. 
Although  these performance  indicators  will not be in place prior  to awarding  the contract,  we 
are pleased  that the contract  will require  specific information  about the development  and 
implementation  of the plan  [for the development  of performance  indicators]  with appropriate 
due dates and disciplinary  actions.  . .  The request  for contract  for the next contract  period 
will require  that performance  indicators  and disciplinary  actions be developed  and that 
agreements  with donor centers  be modified  to include the performance  indicators  and 
disciplinary  actions that will be taken if the center  fails to meet the indicators.  Accordingly, 
we modify the language  of the recommendation  from our draft report  to reflect  HRSAs 
concerns.  We add language  in our recommendation  urging  that the indicators  be 
implemented  within the first year of the new contract.  We believe  that such a time frame  is 
adequate  to achieve  these changes. 
We add time lines because  we are concerned  that an open-ended  time frame  could result  in 
unnecessary  delays.  We wish to go on record  as stating clearly  that developing, 
implementing,  and enforcing  performance  standards  for recruitment  of donors  from minority 
groups are important,  and need to be accomplished  as quickly as possible. 
We fully agree that individual  donor center  goals should be based upon the minority 
population  in the area  served by the donor center.  In our draft report,  we listed three 
options that were  indicative  of approaches  that might be considered.  We continue  to list 
those options  in this final report,  but we also add language encouraging  HRSAand the 
contractor  to develop  additional  ideas to implement  our recommendation  to establish  overall 
minority  recruitment  goals as a way of improving  access to transplantation  for minority 
patients.  We have no objection  to numerical  performance  indicators  over percentages. 
HRSA agrees  that  performance  indicators  for  recruitment  groups  should  be  in place,  but  notes 
that  there  is not  enough  time  to develop  these  prior  to awarding  the  next  contract.  We 
therefore  are  changing  our  recommendation  to reflect  HRSASconcerns.  We  add  language  in 
our  recommendation  urging  that  the  indicators  be implemented  within  the  first  year  of the 
15  new  contract. 
HRSA agrees  with  our  other  two  recommendations--to  develop  contingency  plans  for  cases  in 
which  recruitment  falls  short  of goals,  and to  share  effective  practices. 
NMDPScomments  were  similar  to HRSAs.  We  do,  however,  wish  to address  one  point  in 
particular,  NMDPS comments  on  goals  for  recruitment  of donors  from  minority  groups.  We 
agree  that  recruitment  of minorities  should  be  a significant  segment  in evaluating  the 
effectiveness  of a donor  center.  We  do  not,  however,  agree  with  the  NMDPScaveat  that  this 
should  only  be  a criteria  in an area  where  it makes  sense  to recruit  a given  minority.    In 
our  view,  all donor centers  have a role to play in improving  the chances  for minority  patients 
awaiting  transplant  to fmd a donor.  For this reason,  we continue  to recommend  some type 
of linkage between  recruitment  goals and the minority  population  in each donor centers 
service  area. 
The Assistant  Secretary  for Health  comments  that the recommendations  contained  in this 
report  are important  and should be implemented  as quickly  as possible.  ASHalso comments 
that cultural  competency  training  and bilingual  capability  be included  in the HRSAcontract, 
and that educational  materials  be pretested  with a sample of the target population  prior  to 
their use.  Although  we do not include these items as separate  recommendations,  we do add 
them as topics to be included  in sharing effective  practices. 
ASH raises  other  points  upon  which  we wish  to comment.  Determining  why  whites  constitute 
91 percent  of transplants  but  only  83 percent  of preliminary  searches--and,  conversely,  why 
members  of minority  groups  constitute  18 percent  of preliminary  searches  but  only  9 percent 
of transplants--was  outside  the  scope  of our  study.  lt  is,  of course,  possible  to hypothesize  a 
number  of factors,  including  antigen  matching  and  financial  barriers,  that  may  limit  access  to 
transplants  among  members  of minority  groups.  Even  though,  as ASH notes,  Asian/Pacific 
Islanders  on  the  donor  list  represent  a larger  proportion  of donors  than  in the  general 
population,  they  had  received  only  one  percent  of the  transplants  through  October  1995. 
Fimlly,  ASH questions  why  the  HRSAcontract  does  not  include  recruitment  goals  for 
American  Indian/Alaska  Native  populations,  as it does  for  other  members  of minority 
groups;  we  would  have  no objection  to HRSASadding  goals  for  this  group  within  the 
forthcoming  contract. 
ASPE had  no comments  on this  report. 
16
 APPENDIX  A 
SELECTED  FINDINGS  FROM THE MAIL SURVEYS 
From the donor center surveys: 
We would  like your  assessment  of the relative  importance  of the following  obstacles  to  minority  recruitment 
be obstacles. If you feel that 
in the  area  you  serve.  Please  indicate  the degree  to which  you  believe  these  to 
an obstaclenot listed here  is important,  please  write  it in the space provided. 
Lack of  awareness  of marrow  donation  among  minorities  1(l%)  16(18%)  70(80!%) 
Lack of good  educational  materials  targeted  toward  minorities  40(46%) 31(36%)  16(18%) 
Language  and/or  cultural  barriers  12(14%) 38(44%)  37(42%) 
Mistrust  of marrow  donation  among  minority  groups  5(6%)  24(27%)  58(67%) 
Lack of dedicated  staff  for minority  recruitment  42(48%) 22(25%)  23(26%) 
Lack of volunteer  support  for minority  recruitment  32(37%) 36(41%)  19(22%) 
Small minoriq  population  in the service  area  50(57%)  19(22%)  18(21%) 
lote: N =87  responses 
Donor  center  staff speak  2nd language  35 (40%)  53 (60%) 
Donor  center  employs  minority  staff  57 (65%)  31 (35%) 
Donor  center  works  with recruitment  groups  49 (56%)  39 (44%) 
Donor  center  works  with minority  organizations  or institutions  83 (94%)  5 (6%) 
Donor  center  sponsors  drives  targeted  specifically  at minority  groups  82 (93%)  6 (7%) 
Donor  center  uses educational  materials  designed  by NMDP  specifically  for  86 (98%)  2 (2%) 
minority  donors 
Donor  center  has developed  its own educational  materials  specifically  for  34 (39%)  54 (61%) 
minori~  donors 
Donor  center  uses  educational  materials  developed  by other  donor  centers  for  36 (41%)  52 (59%) 
minority  donors 
[ote: N =88  responses 
A-1
 Did your  donor  center  work  with any NMDP accreditedrecruitmengtroups 
betweenJulyl, 1994andJune30, 1995?  39  49 (56%) 
(Ifyou  answered `>es, ''please answer therest  of thequestions  onthispage;  ~you  (44%) 
answered nopleasegotothenextpage.) 
I  I 
?ote: N =88  responses 
The following  questions  pertain  to the 39 donor centers  working  with NMDP  accredited 
recruitment  groups: 
We relied  on them  for well over  half of our recruitment  8 (20%)  .-
We relied  on them  for about  half of our recruitment  9 (22%)  3 (9%) 
We rarely  worked  with them  19 (51%)  11 (29%) 
We never  worked  with them  3 (7%)  25 (63%) 
Donor  availability  at confirmatory  14 (37%)  9 (22%)  1 (2%)  15 (39%) 
testing 
Actual  donation/marrow  collection  8 (20%)  11 (27%)  1 (2%)  19 (51%) 
Note:  N=39  responses 
A-2
 From  the recruitment  group surveys: 
We would  like your  assessment  of the relative  importance  of the following  obstacles  to  minori~ recruitment in 
the area you serve.  Please  indicate  the degree  to which you believe  these to be obstacles.  If  you  feel that an 
obstacle  not listed here  is important,  please  write  it in the space provided. 
Lack of  awareness  of marrow  donation  among  minorities  ..  .- 11 
Lack of good  educational  materials  targeted  toward  minorities  4  5  2 
. 
II
Language  andlor  cultural  barriers  1  5  5 
! 
I  1 
IIMistrust  of marrow  donation  among  minority  groups  1  3  7 
! 
I  I 
IILack of dedicated  staff  for minority  recruitment  5  3  3 
! 
I  1 
II
Lack of volunteer  support  for minori~  recruitment  3  5  3 
I 
1  1 
Small minority  population  in the service  area  8  2  1 
I 
Note:  N=  11 responses 
Recruitment  group  staff speak  2nd language  7  4 
Recruitment  group  employs  minori~  staff  8  2 
Recruitment  group  works  with recruitment  groups  8  3 
Recruitment  group  works  with minority  organizations  or institutions  11  --
Recruitment  group  sponsors  drives  targeted  specifically  at minority  groups  11  --
Recruitment  group  uses educational  materials  designed  by NMDP  specifically  11  --
for minority  donors 
Recruitment  group  has developed  its own educational  materials  specifically  for  7  3 
minori~  donors 
Recruitment  group  uses educational  materials  developed  by other  donor  3  7 
centers  for minority  donors 
rote: N=  11 responses 
A-3
 APPENDIX  B 
METHODOLOGY 
Data Analysis 
~equantiwtive  pofiiom  ofthisrepoti  are based ontiee  sources:  (l)  Registry  data 
maintained  by the NMDP;(2) NMDPSDonor Center  Access Directory  for October,  1995; 
and (3) 1990 U.S.  Census data. 
(1) We examined  monthly  summary  statistics from the NMDP,from April  1993 through 
October  1995.  These  reports  contain a center-by-center  breakdown  of the number  of donors 
on the Registry  by five racial  and ethnic groups:  Black, white,  Hispanic,  Asian/Pacific 
Islander,  and American  Indian/Alaska  Native.  (2) We used the NMDPSDonor Center 
Service Access  Directory  to identify the service area of each donor center  at the county 
level.  (3) We used county  level population  data from the  1990 U.S.  Census to determine  the 
population  distribution  by racial  and ethnic group of each donor centers  service  area. 
We used data bases constructed  in Lotus  1-2-3 to compare  the racial  and ethnic  distribution 
of each centers  donor  list as of October  1995 with the  1990 Census population  distribution. 
The number  of donor  centers  on the NMDPRegistry  is in a continual  state of flux,  with 
centers  merging  and others being added.  For comparative  purposes,  we used a denominator 
of 97 donor  centers.  Where  centers have merged we combined  appropriate  data files. 
Where  we analyzed  geographic  service areas,  we omitted the Bill Young Marrow  Donor 
Center  because  it contains  military  donors throughout  the world.  In such cases,  the base-line 
denomimtor  was reduced  to 96. 
Mail Surveys  of Donor  Centers and Recruitment  Groups 
In July  1995 we mailed  a pre-tested  survey to each of the 98 donor centers  then  in operation 
and to all  11 recruitment  groups.  We received  surveys from 88 of the donor centers  and all 
11 recruitment  groups.  Because one of the donor centers  has since merged  with another 
center,  we chose to omit the responses  of that center  from our analysis. 
The donor  center  survey  addressed  four areas of donor center  operations:  donor  center  staff 
and activities;  donor  recruitment;  search and work-up  activities;  and financial  information. 
The recruitment  group  survey  addressed  recruitment  group staffing and donor recruitment. 
This report  draws  on material  from the second and third  sections of the donor center  survey 
and the recruitment  group  survey.  A non-respondent  analysis  showed no difference  among 
those donor  centers  that participated  and those that did not. 
Site Visits to Donor  Centers and Recruitment  Groups 
We conducted site visits with staff at nine donors centers and four recruitment  groups.  We 
B-1
 chose  a judgmental  sample of donor centers  and recruitment  groups that were geographically 
diverse;  varied  in size and composition  of the donor lists;  funded on both contract  and fee 
bases;  and located  in a variety of settings,  including  free-standing  centers,  blood banks and 
hospitals.  Using an open-ended  questions we interviewed  staff about barriers  and strategies 
to minority  recruitment,  performance  indicators,  and use of recruitment  groups. 
B-2
 APPENDIX  C

TEXT  OF  CO MNIENTS  ON  THE  DRAFT  REPORT 
Health Resources  and Services Administration  . . . . . . . . . . . . . . . . . . . . . . . . .  C-2 
Assistant  Secretary  for Health  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..  C-8 
National Marrow Donor Program..  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. C-10 
Note:  The Health  Resources  and Services  Administration  and the National  Marrow  Donor 
Program  provide  combined  comments  on four draft reports  that examined  the National 
Marrow  Donor  Program.  This appendix  includes only those portions  of their comments  that 
are relevant  to the report  entitled  Natioml  Marrow  Donor Program:  Progress  in Minority 
Recruitment.   
c-1  ~.,,.*, 
#  J@G
Public Health Service 
DEPARTMENT  OF HEALTH a  HUti  SERVICES

:; 

:

;\-
HeelttI Resources and 
Sewices Administration 
CCT  ~  3  jgg; 
Rockville  MD  20857 
TO:  Inspector  General,  DHHS 
FROM:  Deputy  Adxuinistrator 
SUBJECT  :  Office  of  Inspector  General  (OIG)  Draft  Repo-rts, 
~cNational  Marrow  Donor  Program  (NMDP) : 
1)  Financing  Donor  Centers  0EI-01-95-O0123 
2)  Progress  in  Mino,rityRecruitment OEI-01-95-00120 
3)(cid:127) Geographic Overlap Among Donor Centers 
OEI-01-95-00122 
4) Effectiveness in Retaining Donors 0EI-01-95-00121S1  . 
Attached  is  HRSAS  response  to  your  memorandum  requesting 
comments on the four  subject  draft  reports. 
we  appreciate  the  OIG  conducting  the  review,  Bone  Marrow  Program 
Inspection.  The  draft  reports  were  forwarded  to  the  NMDP for 
comment.  Their comments have been incorporated into our

response.  HRSA  and  NMDP will be performing further analysis and
examination regarding some issues, such as restructuring of donor
centers, implementation of performance indicators, and
specification of retention rates, before specific changes are
made.  HRSA  plans  to  utilize  the  findings  and  recommendations

contained in these reports as an integral part of the development
of the contract.
Questions may be referred to D irdre Wakfihon x35181.  
A
Attachment
c-2  OIG Report:  Proqress in Minoritv  Recruitment  0EI-01-95-00120 
GENERAL COMMENTS 
The concerns  raised  in  this  report  warrant  careful  Consideration.

fiRSA  agrees  that  the  contractor  needs  to  Continue  to  expand

recruitment  and  retention  of  donors  from  racial  and  ethnic

minority  groups  because  the  current  racial  and  ethnic

distribution  of  the  registry  does  not  appear  to  provide  a  member

of  a  racial/ethnic  minority  an  equal  chance  of  finding  an

unrelated  donor  as  a  patient  Who  i.s  not  in  a  minority  group.

OIG RECOMMENDATION:  .

PERFORMANCE  INDICATORS  FOR DONOR  CENTERS.  The  Health  Resources

and  Services  Administration,  prior  to  awarding  any  future

contract  for  the  registry~  should  require  that  the  National

Marrow  Donor  Program  have  in  place  a  performance  indicator  that

measures  the  progress  of  individual  donor  centers  in  recruiting

donors  from  each  of  the  four  racial  and  ethnic  groups.  Donor

centers  falling  short  on  this  indicator  should  be  subject  to

disciplinary  actions,  up  to  and  including  withdrawal  of  their

participation  agreement  with  the  NMDP.

HRSA RESPONSE 
HRSA does concur  with  the  recommendation  that  the  contractor  have 
in  place  a  performance  indicator  that  measures  the progress of 
individual donor centers in recruiting donors from each of the 
four racial and ethnic groups.  However, HRSA does not concur 
that a performance  indicator should be required prior to awardinq 
any future contract for the re~istrv.  The current contract 
expires April 30, 1997 and there is not sufficient time to 
adequately develop performance indicators and implement plans for 
disciplinary actions. 
HRSA agrees that the contractor needs to develop and implement 
performance  indicators with respect to minority  recruitment and 
be held accountable  for achieving the performance standards.  The 
OIG has provided some alternative approaches,  implying that the 
performance measures will need careful consideration.  It is 
doubtful that performance indicators and disciplinary actions can 
be implemented with appropriate care Drier to awarding the next 
HRSA contract. 
Developing  performance  indicators  for  the  individual  donor 
centers  and  implementation  plans  could  not  be  completed  prior  to 
the  award  of  the  next  contract.  NMDP has  contracts  and  sub-
contracts  with  the  donor  centers  and  these  would  need  to  be 
modified  to  fully  implement  a  plan.  The  target  date  for  the 
Request  for  Proposal  is  December,  1996  with  the  award  by  April 
c-3  30,  1997.  These  dates  provide  insufficient  time  for  the 
contractor  to  develop  a  performance  indicator  and  implementation 
plan  for  individual  donor  centers  with  input  from  the  donor 
centers. 
However,  HRSA  concurs  that  having  a  performance  indicator  for 
minority  recruitment  is  a  worthwhile  activity.  HRSA  will  require 
a  plan  for  the  development  of  performance  indicators  and 
implementation  plans.  Specific  information  about  the  development 
and  implementation  of  the  plan  with  appropriate  due  dates  and 
disciplinary  actions  should  be  included  in  the  next  contract. 
The  request  for_contract  for  the  next  contract  period  will 
.-- 
require  that  performance  indicators  and  disciplinary  actions  be 
developed  and  that  agreements  with  donor  centers  be  modified  to 
include  the  performance  indicators  and  disciplinary  actions. 
Therefore,  HRSA  suggests  the  following  modification: 
HRSA  should  require  that  performance  indicators  and 
implementation  plans  with  appropriate  due  dates  be  included 
in  the  next  contract. 
HRSA  does  agree  that  the  contractor  needs  to  Continue  to  recruit 
and  retain  donors  from  racial  and  ethnic  minority  groups  because 
the  current  demographic  distribution  of  the  registry  does  not 
provide  a  member  of  a  racial/ethnic  minority  an  equal  chance  of 
finding  an  unrelated  donor  as  a  patient  who  is  not  in  a  minority 
group. 
HRSA  and  the  contractor  should  evaluate  the  alternative 
approaches  and  reach  consensus  with  donor  centers.  For  example, 
the  contractor  could  require  that  a  donor  centers  list  must 
exceed  by  some  factor  the  proportion  of  minority  donors  in  the 
local  service  area.  An  alternative  approach,  requiring  that  a 
donor  center  recruit  some  specified  percentage  of  the  minority 
populations  living  in  the  service  area,  is  a  preferable  approach 
because  it  allows  for  the  contractor  to  target  a  specified  number 
of  donors  (or  percentage)  from  the  populations  in  the  area  and 
would  allow  more  flexibility. 
By  targeting  the  percentage  of  the  population  that  resides  in  the 
service  area,  HRSA  would  not  be  taking  into  account  large  family 
drives  that  force  down  the  percentage  of  minorities  in  a  file. 
The  most  important  consideration  is  imDrovinq  the  likelihood  for 
a  minority  patient  to  find  a  donor  and  i.ncreasinq  the  percentage 
of  new  donors  from  minority  groups.  Percentages  are  not 
necessarily  relevant. 
Expressing  mi.nori.ty  recruitment  goals  as  a  percentage  of  the 
population  may  be  subject  to  misinterpretation.  A  target  number 
of new donors  from  each  minority  group  for each donor center 
c-4  would be a more useful measure. 
A modified recommendation  would stress that overall minority 
recruitment goals should aim at providing improved access for 
minority patients.  Individual donor center goals should be based 
upon the minority population  in that area. 
OIG RECOMMENDATION: 
PERFORMANCE INDICATORS FOR RECRUITMENT  GROUPS.  HRSA, prior to 
awarding  any  future  contract  for the registry,  should  require 
that  NliDP  have  in  place  performance  indicators  that  measure 
accomplishments  of  recruitment  groups. 
HRSA  RESPONSE: 
HRSA  agrees  that  the  contractor  should  have  in  place  performance 
indicators  for recruitment  groups~  but  this  recommendation  does 
not allow time for the development  or the implementation of these 
performance indicators.  Developing the indicators, disciplinary
actions, and modifications  of contractual agreements with
recruitment groups will require more time than is available prior
to the award of the contract.  HRSA expects that the Request for
Proposal for the next contract will require that agreements with
recruitment groups be modified to develop or  include  specific

performance  indicators,  implementation  plans,  and  di.sci.plinary

actions.

The  alternatives  offered  a=  operational  and  will  be  considered 
as  performance  indicators  are  developed.  The  NMDP has  made 
initial  recommendations  to  f=mploy  forms  monitoring  and  timeliness 
of  consent  forms  submission  as  measures  of  recruitment  group 
performance  and  would  improve  efficiency  in  minority  recruitment. 
HRSA  recommends  the  following  modification: 
HRSA  should  work  with  the  contractor  to  develop  performance 
indicators  and  irnpl@rnentation  plans  for  recruitment  groups  . 
OIG  RECOMMENDATION: 
CONTINGENCY  PLANS.  HRSA  should  identify  steps  to  be  taken  should 
the  NMDP continue  to  fall  short  on  the  recruitment  goals 
specified  in its current  contract,  as  occurred  i.n  the  first  year 
among  Hispanics.

HRSA RESPONSE: 
HRSA agrees with this  recommendation.  HRSA  expects  that  the  next 
RFP will include a requirement that the contra&or  submit a 
report at least annually on recruitment group activities with a 
c-5  ,, 
determination  of  whether  recruitment  goals  for  minority  groups 
are  being  met  and whether  any  shortfall  is permanent  or 
temporary.  The report  will  include  recruitment  group  specific 
information  about  goals  and achievements  and allocations  of staff 
time for minority  versus Caucasian recruitment.  The proposal 
will specify a corrective action plan for recruitment groups that 
are deficient on recruitment goals and will require  the

contractor  (currently  NMDP)  to  be  responsible  for  developing  and

ixnplementing  these  performance  goals.

OIG  RECOMMENDATION:

SEARING  EFFECTIVE  PRACTICES.  The  NMDP should  draw  on  the

e=ertise  of  those  donor  Cenfers  and  recruitment  groups  that  have

sh&#n  success  in minority  recruitment  as  one  way  of  p;oviding

assistance  to other  donor  centers  in  their  minority  recruitment 
efforts.

HRSA RESPONSE: 
HRSA supports the recommendation that the contractor should 
undertake demonstration projects aimed at increasing the 
retention rate among minority donors.  We agree that the 
contractor should make better use of the expertise of donor 
centers and recruitment groups that have had success in 
recruiting donors. 
HRSA agrees that recruitment of minorities  should be a 
significant factor in the evaluation  of  the  effectiveness  of  a 
donor  center,  particularly  in  areas  with  high  numbers  of 
minorities.  HRSA  agrees  that  Continuous  Process  Improvement 
monitoring  should  be  an  important  part  of  the  evaluation  process. 
HRSA  agrees  that  the  next  Request  for  Proposal  will  require  a 
plan  to  identify  and  conduct  projects  to  demonstrate  the 
effectiveness  of  specific  innovative  strategies  for  improving 
retention  and  effectiveness. 
NMDP has  included  workshops  at  its  annual  Council meeting to 
address retention of donors.  The 1996 Council meeting included 
two workshops on  Planning  for  a  Long  Registry  Life:  Donor 
Retentionand  Several  activities  related  to  special  initiatives 
for  minority  groups,  including  recognition  of  the  Asian/Pacific 
Islander  and  the  African  Americans  United  for  Life  campaigns,  the 
minority  initiatives  (Hispanic,  African  American,  American 
Indian/Alaskan  Native,  and  Asian/Pacific  Islander)  .  These 
workshops  featured  representatives  from  donor  centers  and 
recruitment  groups  with  expertise  and  success  in  improving 
recruitment  and  retention  among  minorities. 
The contractor has four standing committees that address donor 
center and recruitment group activities, particularly with 
C-6
 minorities -- Membership  and Process  Improvement,  Minority 
These 
Affairs, Donor RecrJitmenct and Patient  ervices= 
cm.mittees  include  representatives  from  donur  centers, 
recruitment  groups,  and minority  populations. 
C-7
 ,. 
DEPARTME~  OF HEALTH AND HUMAN  SERVICES  Office of  the  Secretar 
AUG28  1=  Assistant  Secretary  for Healt 
Office  of  Public  Health  and  Sciance 
TO:  InspectGoern eral  Washington  O.C.  20201
FROM:  AssistaSnetc retafroyrHealth 
SUBJECT:  OIG DralRle portosn theNational Marrow  Donor Program
. 
Thankyou for the oppotitytoreviewt heofficoef theInspectGoern eralDrsa fRieports on 
the National Marrow Donor Program.  1 am pleased that in general  the reports show that much 
progress has been made.  However, the reports aiso showed  that there are additional  areas where 
the Department mustfocus its attention.  The recommendations  contained  in these  reports are 
important and shouid be implemented  as quickly as possible. 
Attached are several areas which 1 beiieve  should be addressed  in the reports.  Thank you for the 
opportunity  to review these important  reports.  If you have  any questions  on the concerns raised. 
please call Mr. Matthew  Mu.rguia of the Office of Minority  Health  at 301443-9923. 
/7/2jM_L-
Phillip R. Lee,  M.D. 
Attachment 
C-8
 OIG IXLWT REPORTS ON

THE NATIONAL  MARROW  DONOR PROGIGWI

  REPORT:  Progress  in Minority  Recruitment 
.- Theuseof the terms Caucasianan dwhitesar einterchangeaubsleyd throughoutth
e 
reportO.I G may consideursing the OMB Directive  15 classification  fo$ describing the 
various racial/ethnic  groups,  which are white, black, Asian/Pacific  Islander, American 
Indian/Alaska  Native,  and Hispanic, 
-- There  should be some discussion  as to why the HRSA contract  does not speci~  annual 
recruitment  goals for Native Americans  (page 6). 
-- There  should be some discussion  as to why whites constitute  83% of preliminary 
searches, but account for 9170 of transplants  (Table 3, page  10). 
-- The discussion  of mistrust  by Asians  on page  10 is contradicted  by the discussion  on page 
5 which  indicates  that  Asians  are over represented  in the donor  pool. 
-- On page  11, is cultural  competency  training,  including  bilingual  capability,  included  in 
the HRSA  contract?  If not,  this  avenue  should  be explored  as a means  to find bilingual 
staff,  especially  those  knowledgeable  about  medical  terms. 
-- On page 11, OIG shouldc onsidearr ecommendatiownh ichwouldrequiraep re-tewsitth

asampleofthetargepto pulatioonfe ducationmaalt eriaplrsi otro theiurs
 e.

  REPORT:  Effectiveness  in Retaining  Donors 
-- The use of the terms Caucasian  and whites are interchangeably  used throughout  the 
report.  OIG may consider using the OMB Directive  15 classification  for describing the 
various racial/ethnic  groups,  which are white, black, Asian/Pacific  Islander, American 
Indian/Alaska  Native, and Hispanic. 
-- Figur2e, page 12, shows that 10-17  percent of donor centers indicate that language 
barrierspresentanobstacle to searchandworkup. However, thisissue does notappearto 
be discussed, norareanyrecommendationstoaddressthis areacontainedinthereport. 
Given the large percentage of centers reportingthis as a problem, and the stated fact that 
it is more diflicult to maintain minority donors, an examination of this issue would be 
appropriate. 
c-9  Septembe4r,
 1996

National  MiuTow 
Donor  ProgriIrn 
Notional Coomlinating Ccntm 
XH  Brndwuy  Sued N.E
SUitXcXI 
Mjnnqrniis.  MN 55413 
612-G27-WX  JtiItBhraslow 
I-X(K)-526-7MOJ  1  Director,  Division  of Organ Transplantation 
FAX: 61>627.5899 
Health ResouRes  and services  AdministratioII 
/	
bad  ofmm  Park bWIl  Building 
Hcrtruz A. Perkinx, M.D..  (%UU  5600 Fishers  Lmc  - Room 729 
Jnrrdrun R bong,  Vice C&r;~  Rochiile,  MD 20857 
Clam PsdilIa An&ews 
kichd  H Au.?L M.D. 
IAXWICC D. AIIs, J.U. 
Dear Ms. Bradow: 
Jnuph ~.Bell M.D. 
b  Dupwu. JM.D., Mc.  I 
Rogcr  W. t%nm, P?@. 
Ban S. !-id=.  J.D.. Ph.D.  Thank you very much for providing  the National  Marrow  Donor 
David B. Fmhnm*ycr. J.!).  Program@  (NMDP)  with an opportunity  to review  the draft  reports  of the 
J. @l)fOll Gordon. J.D. 
Office of Insp@or  GeneraJ (OIG), Depa=eti  of H=M  and Human 
JohnA. [{amen, M.n. 
+-cdemk J, HarrtL M. S.F-E.  M.B.A.  Scmices.  The draft reports  were sent to members  of the MinoriW Affkirs, 
.  MLBVM. Hrirtirz  M.D.. MS.  Membership and Process Improvement, Donor Rccmitment and Executive 
Ermt R. Jtif.  M.f% 
NnJICyA, Kcm- M.D.  Committees as well as the NMDPs Network EYaiuationAdvisoryPanel

susJrrkitrnwr.  MD.  and seieeted  members  of the stat% 
Niclrtrk  J. Neuhouscl.J.D..M.SM. 
peteri-PYIRMGN. 
CIUrkX A. (CAP) Pdicr  The comments received have been collated and a synthesis of the 
r- PccIuwrI, M,(3.. Ph.D.  responses is presented below.  The intent of the NMDP  is not to criticize 
L[. Gcn. Frank Li. f%crw.  k. 
Kobcrt K. Ross M.D.  the draft reports,  but rather to add information  from a variety  of 
Da&vfiwd ,Fu.d S Ptr.o Snctxokn . MM.-l)D. .  respondents,  all of whom  have  been  involved with aspects of donor center 
operations ador  donor recruitmem.  &  you know the NMDP is well 
J&n  S. Thompson.Mm. 
wm  H. Wdlns. M.D.  along in its awn analysis of donor center fimctiom, the findings of which 
StemI N. WOIIT.M.D.  should provide  further  usefid rmxnrnendations. 
Amruneue  K Yanct.y.M. O.. M.RH. 
Jr- 
Admiml E-R. ZUmW~L 
Followintghesummaryof comments on each draft report we have
Gaig W. S.l-irwG M.(3.. Ph.D. 
provided  our own list of rccomrncndations  for modification  of the OIG 
C4iqf Ezmwlivc Ofi(:ef 
document. 
~mim  F.nwitEw 
Rntrcrxc. OruvcS.D.V.M. 
MinorIv  Recnxiuncnt 
Atktiid  E. R. Zumwak. Jr. 
Severali ssuewse reraiseadb
 out this draft report.  It was pointed out that expressing 
~0~  @mc16 Awnrtt: 
minority recruitment  goals as a percentage of the population  was subject  to 
The HnmmtblcC. W. .~il~  young 
JohnA. Han.w  M.D.  misinterpretation  and that a target_  based upon previous  experience,  while stil 
(UIIC&ZbWiI12L  MD. 
subject toerror,would be a more useful measure.  An example of the problem  in usi 
A cdldr-uw  efforr of the  a Per~tage  of ~  PoPfi~on  @deli=  is fo~d  in the fact that the NMDPs 
ruitment of Ashn-PacifIiscla nders (A-PIa)i readeyx ceedtsh epercentagofe  this
AmencaAitsstociation 
ufnld  - aciaglr oupinthegeneraplo pulatiaonndyetthehlMDP doesnothaveenoughA-PI. 
F 
Amcri- Red  Cr-
Cnoncil of CotnmnW 
Blood Cen@m 
I 
With funding (rum: 
Hcshh R&numcs and Scmiccs 
Adrnintfimtwn  ad 
Navzl MI%IIcd Remmh  nnd 
m_VViC1~CTtt  command  i  to provide A-PI patien~  e~?l  access to u=lated  hansplants.  A similar comment 
emphasized  that  the NMI?P  ISbetter able to identi~  donors for Hispanic patients than 
for AfricanAmerican  patfents because Hispanics are more likely to match witi 
Caucasiandonors.  Thus r=mitment  goais commensurate with providing more equal 
access for minority patients my  be a better basis for this calculation. 
Several respondents  made reference m the idea that not every donor center should 
necessarilbye expectedtOk ~  eqtiy  effectivmei
 noritydonor rectuiter.  It was 
suggested that resources  (and exp=mtions)  be dispropcmionately higher in regions of 
large minority  poptiatiom  as a possible way to increase  cost effectiveness. 
There was agreement  witi  tie@  report in considering minority remitment  as a part 
of a centers  overall performance.  There wa5 also feit m be a need to monitor the 
effectiveness of rectitmti  IYOUPSSinCSsome donor centers rely solely upon these 
groups to recruit minori~  donors. 
A rwuitment  group mpmetitive  felt that the draft report proposals to employ forms 
monitoring and timeliness  of consent forms submission as measures of recruitment 
group  perforrnanw  were  valid and would improve the NMDPs efficiency in minority 
donor recruitment.  - W=  also  support  for the recommendation to undertake 
demons-tion  projects  aimed at increasing the retention rate  among  minority  donors. 
It was of interest that in the c%  of this particular remitment  group, work with their 
donor centers to improve retenhon was already in progress  . 
Another point of agreement with the H  report was to repeat several of the analyses 
in the face of the rapidly  increasing recruitment of minority donors and to make better 
use of the expertise of those donor centers and recruitment  groups that have succeeded 
in recruiting  minority  donors.  
In considering changes in thc methods of financial support for donor centers,  a medical 
director expressed a note of caution:  Them is a real danger  that certain  successfid 
models for minority  -tment  efforts -d  be jeopardize  by decreased funding. 
It is again important to point out an NMDP  initiative  that  is currendy  in its early 
stages, but promises to add strategic data and recommendations  for minority 
recmitrnent:  The  NMDPs  study  of optimal registry size.  Usingavailable  information 
about  the  likelihood  of finding  a successfid  match  for patients  of all races  and 
reauitmetiretention  statistics and projections, a panel of biostatkticti  will provide 
quantitative  information  about future recruitment requirements. 
Recommended  Modifications  to the Draft Report: 
	 Minority  recruitment goals  should not be targeted  to the percent  in the 
population semxi.  A-PI recruitment already exceeds the percent in the 
population,  yetwe haveinsufficiAe-PnIt donors to give them an equal chance 
of finding a compatible donor.  Large Caucasian family drives force down the 
percent of minorities  in a fiIe.  These are only a few of the arguments. 
Numerical  targets are more meanin@]. 
C-II
 We agree th~  =~iw  of min~~ti~  s~uld  ~  a Si@ifi=M  segment  in our  -
	
evaluation  of tie  ~~veness  of a donor center, provld~  tie  center is located 
in m  area  where  N makes  smse  torecruia tgivenminority. 
	 continuousP-SS  ~pmv-nt  ~On-i~@  shouldbe~  ~pomint  partofthc 
evaiuatioIxpr0@5s. 
we  m  tiy  cmb~ked  upon  comimi:g  the effo~  be~  with  these  OIG  draft  reports.  Our 
OWn  detailed  evaiuaaon  of cap  m recfult donors and remeve  them for donation  is well under 
way.  The effects of  geographicoverl~ =  be~  e~~~~.  @  our Network  Evaluation 
Minority mcmmnent  approaches  and donor 
Advisory  Panel  and by several committees. 
retention  are areas of high conurn,  king  adhs=d  by ow MinoritY Affairs  Committee,  the 
Donor  Recruitment  Committee,  and the Mmbtiip  and Process Improvement  Committee. 
These are aIl high priority  items for our Board of Directors,  which til  be reviewing  these 
documents at its regular meeting in several weeks. 
draft 
We hope that you fti  these co-em,  heipfd.  ~.  NMQP thanks you for sharing  these 
~rts  and looks forward toa continuing cdlaborauon  in Improving all aspects of donor 
center and recruitment  gruup operations. 
&-A-dJ= 
/
. 
Herbert A. Perkins,  M.D. 
NMDP Board Chair 
. 
c-12  APPENDIX  D

ENDNOTES 
1. Z7zeLi
 ving  Gift of Life,  a pamphlet  by the National  Marrow  Donor  Program. 
2.Bone Marrow  Transplants  - A Book  of Basics for  Patients  (reprinted  by NYSERnet,  Inc. 
with permission  from BMT newsletter),  chapter  4, pp.  35-36. 
3. 42 U.S.C.~k(b)(l)-(7) 
4.42 U.S.C. $274k(b)(l)-(7) 
5.  Table 2 (page 20) and Table  11 (page 38) in 1995 Annual  Repon  of the  U.S.  Scientijc 
Registry for  Transplant Recipients  and the Organ Procurement  and Transplantation  Network, 
Transplant Data:  1998-1994,  United Network  for Organ Sharing,  Richmond,  VA,  and the 
Division  of Transplantation,  Bureau of Health Resources  Development,  Health  Resources  and 
Services  Administration,  U.S.  Department  of Health and Human  Services,  Rockville,  MD. 
6.	 U.S.  General  Accounting  Office,  Bone Marrow  Transplants: National  Program Has 
Greatly Increased  Pool of Potential Donors,  GAOIHRD-93-11,  November  1992, p. 11. 
7.	 Persons  of Hispanic  origin may be of any race.  The NMDP  also categorizes  donors  as 
Unknown,  Decline,  or Other.  Donors categorized  as others  increased  from  34,164  to 
36,181.  In determining  the percentage  of minorities  on the list, we calculated  minorities  as a 
percentage  of the total number  of donors on the registry.  Because we could not ascertain  the 
race  or ethnicity  of donors  listed as Unknown,  Decline,  or Other,  we included  them  in the 
denominator  but did not assign them to any racial  or ethnic group. 
8.  African  Americans  Uniting  for Life was the first campaign  to be launched.  The 
metropolitan  areas  selected  for this campaign  included:  Atlanta,  Baltimore,  Chicago,  Dallas, 
Houston,  Jacksonville,  Kansas,  Memphis,  New Orleans,  Tampa/St.  Petersburg,  and the 
District  of Columbia.  Asian/Pacific  Islander  Donors Can Save Lives  is the title of the NMDP 
campaign  focusing  on  Asian  and  Pacific  Islander  donors.  The  target  markets  for  this 
campaign  included:  Northern  and  Southern  California,  New  York,  Seattle,  Hawaii,  and 
Chicago. 
9.	 Target  markets  for this campaign  include:  Los Angeles/Orange  County,  California; 
southern  and eastern  Texas;  and Puerto  Rico. 
D-1
 10.  New York City,  Los Angeles,  Chicago  and other cities have alleged  that the  1990 U.S. 
Census undercounts  minorities.  The U.S.  Government  has acknowledged  that it missed 
about  1.6 percent  of the nations population,  including  about 4.8 percent  of blacks and 5.2 
percent  of Hispanics.  In March  1996, the Supreme  Court has decided that the  1990 census 
countdoesnotneedtoberevised.

11.We presenhte reacopyofTable5 fromthatreportw,h ichpresentdsa
taonthe

retentiroant ebyraciaaln dethnigcr
 oup:

Caucasian  71  %  76  %  83 %  81 % 
Hispanic  56  %  63  %  70 %  62 % 
African  American  55  %  68  %  70 %  59 % 
Asian  and Pacific  Islander  47  %  62  %  59  %  51  % 
Native  American  71  %  -74 %  69  %  76  % 
Totals:  66  %  72  %  81  %  76  % 
Source:  NMDP  Registry  Statistics 
Analysis:  OffIce  of Inspector  General  (OIG). 
12.  Because we compared  1995 recruitment  levels with population  data from the  1990 U.S. 
censust,hetrueproportion  of minority  donors  in each  centers  service  area  may  be 
underestimated.  This  should  be  considered  a conservative  estimate. 
13.  The  NMDP has  recently  accredited  a new  recruitment  group  called  SAMAR.  This 
recruitment  group  targets  Asian  Indian  donors. 
14.  U.S.  General  Accounting  Office,  Bone Marrow  Transplants: National  Program Has 
Greatly Increased  Pool of Potential  Donors,  GAO/HRD-93-l  1,November  1992. 
D-2