Department  of  Health  and  Human  Services 
OFFICE  OF 
INSPECTOR  GENERAL 
NATIONAL  MARROW  DONOR  PROGRAM 
EFFECTIVENESS  IN  RETAINING  DONORS 
# OEI-01-95-O0121  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 
nationwideprogram of audits, investigations,evaluations,sanctions,andfraud alerts.  The 
Inspector General informs the Secretary of program and managementproblems and recommends 
legislative, regulatory, and operational approaches to correct them. 
OFFICE  OF  EVALUATION  AND  INSPECTIONS 
The OIGSOfficeof Evaluationand Inspections(OEI)conductsshort-termmanagementand

program evaluations(calledinspections)that focuson issuesof concernto the Department, the

Congress, andthe public.  The inspectionreportsprovidefindingsandrecommendationsonthe

ei%ciency,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  Refion  Headmuu-ters

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 
EFFECTIVENESS  IN  RETAINING  DONORS 
# 0EI-01-95-O0121  EXECUTIVE  SUMMARY 
PURPOSE 
To assess the effectiveness  of the National  Marrow  Donor Program  in retaining  donors  for 
bone marrow  transplants  between unrelated  volunteer  individuals. 
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,  or human  leukocyte  antigens (HLA), must match  as closely  as possible. 
The Natioml  Marrow  Donor Program  (NMDP)is a nonprofit  organization  based  in 
Mimeapolis,  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). The NMDPaccredits  donor  centers 
that recruit  volunteers  to join  the registry,  which contains  almost  1.5 million potential 
donors  in 97 domestic  donor centers. 
Volunteers  who join  the registry  have their blood typed for the HLA-Aand -B antigens.  If 
a patient  seeking  a transplant  matches  with a donors  antigens,  the donor center  contacts 
that donor  for first level followup testing to type the donors HLA-DRantigens.  If these 
antigens  match,  the donor may be called for second level confiiatory  testing,  which may 
lead to marrow  domtion  and transplantation. 
Some potential  donors,  however,  do not proceed  to followup  testing.  The term  retention 
rate refers  to donor centers  success in keeping  donors  when they are called for followup 
testing. 
This report  is based on data maintained  by NMDP;a mail survey of 88 of the 97 domestic 
donor centers;  and site visits to 9 donor centers  across the country. 
FINDINGS 
The  overall  donor retention  rate has remained  about the same over the past 3 years. 
While the retention  rate has improved  for first level followup testing,  it has declined 
for  second  level confirmatory  testing. 
Donor  retention  at first level testing  improved  to 73 percent  for the year ending 
September  1995, up from 66 percent  for the year ending September  1993. 
However,  donor retention  at confhrnatory  testing declined  to 75 percent  for the 
year ending  September  1995, down from 81 percent  for the year ending  September 
1993. 
i  Retention  rates among donors from racial and ethnic minority  groups lag behind 
those for whites. 
At first level testing,  tieretention  rate forminority  donors fiproved  to66  percent 
for the year ending  September  1995, up from 55 percent  for the year ending 
September  1993.  In comparison,  the retention  rate among white donors  grew from 
71 percent  to 76 percent. 
However,  retention  of minority  donors at confkmatory  testing declined  to 60 
percent  fortheyear  ending September  1995, down from 67percent  for the year 
ending  September  1993, while it fell from 83 to 81 percent  among white donors. 
Even though the decrease  in donor retention  rates at confirmatory  testing  is small,  it 
still raises some concerns. 
The NMDPand donor centers  have gained substantial experience  in donor registration  and 
education,  adopted  new technologies  for locating donors,  and developed  continuous 
process  improvement  indicators.  We had expected  ongoing improvement  in retention. 
Although  improvement  was evident  at frost level followup testing,  we found that this was 
not the case at confiiatory  testing.  Our review  identified three  factors that may explain 
this trend: 
Luck of direct  donor commitment  at the jirst  level followup  stage.  Some donors

were  typed for their HLA-DRantigens at initial registration.  Because only verbal

permission  is required,  these donors do not need to be tested again until the

confhnatory  testing  stage.  All new minority  donors are typed at registration  to

more  readily  identify matches.  This front end typing may provide  one important

explanation  for the greater  decrease  in their retention  rate at confirmatory  testing.

Potential  conj-lict between  a rapidly growing  re~s~  and donor education.  Some

donor  centers  may be emphasizing  increases  in the number  of donors  on their  list,

rather  than attracting  donors who will come forward  when called.  Some centers

may not be doing an effective job of educating  donors at initial recruitment  about

what will be required  of them in the event of a match.

No awareness  of decline  in confirmatory  testing retention  rate.  Some donor

centers  may not recognize  the decline  in donor retention  rates at confiiatory

testing.  Even though donor retention  is declining  at this stage,  donor centers

responding  to our survey cited obstacles to retention  less frequently  at contlrmatory

testing  than they did at first level testing.

We raise concerns  about the decline  in retention  at confhmatory  testing for two reasons: 
Ptient  expectations  are high at confirmatory  testing.  A request  for confiiatory 
testing  occurs  when a patient  awaiting  a transplant  knows that a preliminary 
ii  potential  donor match has been identified.  Failing  to retain donors  at this stage 
means that the patients  hopes for a transplant  may have been raised unrealistically. 
Losing  donors at confirmatory  testing is costly for ptients  awaiting  transplant. 
When  a patient  requests that a potential  donor be tested for HLA-DRantigens,  that 
patient  is billed  an average  of $264. The patient  must pay for that test,  even if the 
donor  does not come forward  at confkrnatory  testing. 
RECOMMENDATIONS 
The  Health  Resources  and  Services  Administration  shouId  specify,  either  upon  issuing 
the  forthcoming  contract  or through  a future  modification  of that  contract,  the 
overall  retention  rate  to be achieved  by the  registry.  The current  contract  specifies 
goals for recruitment  of donors and minority  donors,  as well as for the number  of 
transplants.  However,  the contract  does not contain  goals for retention  of donors,  the 
important  middle  step in that process.  We urge HRSAto speci~  the target retention  rate 
within the fwst year of the new contract. 
To the extent that resources  are available,  the Health Resources  and Services 
Administration,  working with the National Marrow  Donor Program,  should support 
demonstration  projects that test alternative  strategies  for retaining  donors.  We urge 
that particular  attention  be paid to demonstrations  that seek to increase  the retention  rate 
among  donors  from racial  and ethnic minority  groups. 
The National  Marrow  Donor Program  should work with donor centers to develop and 
implement  methods  for improving  retention  at both the first attempt and subsequent 
attempts to contact  donors.  We hope that improving  retention  among donors  from racial 
and ethnic  minority  groups will be a focus of these efforts.  We encourage  NMDPalso to 
put in place plans for evaluating  the success of these methods  and a strategy  for 
disseminating  successful  methods  to donor centers.  Options that might be used to reach 
that goal include: 
Specifying  a retention  rate in its operating  agreement  with each donor center. 
Augmenting  performance  indicators  to emphasize  continuous  improvement  in donor 
centers  performance  over time. 
Enhancing  donor education  at initial recruitment. 
Emphasizing  to donor centers  the need for fill  education  of donors when 
contacting  them for fust  level followup testing. 
Working  with HRSAto devise a strategy  for improving  publicity  around  the need 
for retention  and donor maintenance. 
...
111  COMMENTS  ON THE  DRAFT  REPORT

HRSAand the Assistant  Secretary  for Health  (ASH)provided  comments  on our draft report,

as did NMDP.

The HRSAand NMDPquestion  why we compared  changes  at first level followup  (DR

typing) and second level confkmatory  (CT) testing,  rather  than at first attempt  and

subsequent  attempts  to contact donors.  We agree that it makes sense to think in terms  of

first attempt  at contact  and subsequent  attempts,  as the NMDPand HRSAsuggest.

However,  because  NMDPreports  data in terms  of first level followup testing and

confirmatory  testing,  we continue  to use those terms  in our analysis.  Nevertheless,  we

have changed  our recommendations  to encourage  overall retention,  at both first and

subsequent  contact  attempts.

HRSAagrees  with the substance  of our recommendation  that the contract  should specify the

retention  rate to be achieved,  but the agency raises concerns  that implementing  these

recommendations  will take longer  than we recommended  in our draft report.  We agree

and have changed  our recommendation  to specify that the appropriate  retention  rate be

implemented  through  a contract  modification,  rather  than prior  to issuing the new

contract.  We urge  that these changes  be implemented  within the first year  of the new

contract.

HRSAand NMDPsupport our recommendation  to support demonstration  projects  that test

alternative  strategies  for retaining  donors.  We agree that such projects  should contain  an

evaluation  component  to assess the feasibility  of these strategies  for broader  use.  We also

urge that these projects  pay attention  to overcoming  language barriers,  as recommended

by ASH.

iv  TABLE  OF  CONTENTS 
PAGE 
EXECUTIVE  SUMMARY

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

FINDINGS

.Initial  andconllrmatory  testing rates  . . . . . . . . . . . . . . . . . . . . . . . . . ...4

.Retentionrates  among minority donors  . . . . . . . . . . . . . . . . . . . . . . . . ...9

  Concerns  about decline  in retention  at confknatorytesting  . . . . . . . . . . . . . .  10

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

COMMENTS  ON T~D-REPORT  . . . . . . . . . . . . . . . . . . . . . . ...15

APPENDICES

A:  Changes  indonor  retention  rates.  . . . . . . . . . . . . . . . . . . . . . . . . . . ..  A-l 
B:  Textofcomments  onthedraftrepofi  . . . . . . . . . . . . . . . . . . . . . . . . . . ..  B-l 
C:  Endnotes  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. C-1
 INTRODUCTION 
PURPOSE: 
To assess the effectiveness  of the Natioml  Marrow  Donor Program  in retaining  donors for 
bone marrow  transplants  between unrelated  volunteer  individuals. 
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 fatal blood diseases.l 
Many 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  finds 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 nonprofit  organization  based  in 
Minneapolis,  Minnesota.  The NMDPoperates  the congressiomlly  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 NMDPbegan 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 Community  Blood Centers.  The NMDPbegan 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, this time to HRSAin recognition  that NMDPwas a service delivery  program,  rather 
than a basic research  initiative. 
1  The major  functions  of the registry  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.   In addition,  the statute calls for a system 
of patient  advocacy,  support  studies and demonstration  projects,  and the collection  and 
dissemination  of data concerning  bone marrow  transplantation  and collection.3 
The NMDPaccredits  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 additioml  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 hospital  departments,  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  Process  of Finding  a Donor 
Finding  a donor  for bone marrow  transplantation  involves many steps.  Essentially,  these 
steps can be viewed as two basic processes.  One is the ongoing process  of recruiting  and 
maintaining  a pool of potential  donors that can be called upon to donate bone marrow. 
The second process  occurs  when a patient  initiates  a search for an unrelated  donor  from 
within that pool of potential  donors. 
Potential  donors  register  with the NMDPthrough  donor centers  or recruitment  groups.  At 
registration,  all donors  are typed for their  HLA-Aand -B antigens.4  Because of the high 
costs associated  with their typing and the infrequency  with which potential  donors  are 
actually  called upon to donate,  the third pair of antigens,  the HLA-DRantigens, 
traditionally  have not been typed until a later stage at the request  of a patient  needing  a 
transplant.5  To protect  donors  privacy,  information  about their HLAtype and other 
demographic  and medical  information  is stored  in the NMDPScentral  computer  under  a 
coded  system.  Only the donor center  knows the potential  donors  identity. 
Any physician  can initiate  a preliminary  search on behalf of a patient  at no charge.  The 
preliminary  search compares  that patients  HLAantigens to the antigens of donors  listed in 
the registry.  The NMDPfaxes summary  information  about the number  of potential  donors 
in various  match-grade  categories  to the physician  within 24 hours of receiving  the 
request.  A request  for further  typing of particular  donors  (a formal  search) must be made 
through  an NMDP-accredited transplant  center.  The NMDPgenerates  a complete  list of 
each potential  donor  in order  of the best available  match. 
The patients  physician  at the transplant  center  selects potential  donors  from the formal 
search  report  for further  compatibility  typing.  The physician  faxes these requests  back to 
the NMDPcoordinating  center,  which notifies the appropriate  donor center  that one of its 
2
 donors  has been selected.  Thedonor  center  contacts that donor for first level followup 
testing  (DR) to type the donors  HLA-DRantigens.  If these antigens match,  the patient  may 
be called  for second level confkmatory  testing (CT). 
Eventually,  one donor may be identified  as the best possible match for the patient. 
Assuming  that this donor  is still willing to donate marrow,  further  typing,  testing,  work-
up,  and informed  consent take place. b  That donor will go to a collection  center,  where 
marrow  is collected  in a surgical procedure.  The marrow  is then hand delivered  to the 
transplant  center  where  it is infused into the patients  blood system. 
Some potential  donors,  however,  do not proceed  to followup testing at DR or CT, even if 
they are a potential  match.  Yet this is a critical  point at which the success of the registry 
and of individual  donor centers  needs to be assessed.  Their  effectiveness  in finding 
donors  at these two points directly  impacts the success of the program.  We use the term 
retention  rate to refer  to donor centers  success in keeping donors when they are called for 
followup  testing. 
SCOPE  and METHODOLOGY 
This report  addresses  the domestic  donor centers  only.  The report  is one of four 
companion  reports  addressing  the National  Marrow  Donor Program.  The other  three 
reports  are:  National  Marrow Donor  Program:  Progress  in Minority  Recruitment  (OEI-
01-95-00120);  National  Marrow Donor  Program:  Geographic  Overlap Among  Donor 
Centers (OEI-01-95-00122);  and National  Marrow Donor  Program:  Financing  Donor 
Centers (OEI-01-95-00123). 
This report  utilizes  three primary  data sources: 
- 1)  The NMDPSaggregate  statistical  data on donor retention  at DR typing and CT testing, 
broken  down by donor center.  We examined  data at the following  intervals:  two 
12-month periods  (October  1, 1992 to September  30,  1993 and April  1, 1993 through 
March  31,  1994) and three 6-month periods  (April  1, 1994 through  September  30,  1994; 
October  1, 1994 through  March  31,  1995; and April  1, 1995 through  September  30,  1995). 
2)	 A mail survey  of the 97 domestic  donor centers.  We received  88 responses,  a 
response  rate of 91 percent. 
3)  Site visits to donor centers  in California,  Massachusetts,  Minnesota,  New Jersey, 
North  Carolina,  and South Carolina. 
We conducted  this study in accordance  with the Quali~  Stanabrds for  Inspections  issued 
by the Presidents  Council  on Integrily  and Efficiency. 
3
 FINDINGS 
~E  OVERALLDONORRETENTIONRATEI-IASREMAINEDABOUTTHE SAMEOVERTHE 
PAST3 YEARS. WHILE THE RETENTIONRATEHASIMPROVEDFOR FIRSTLEVEL 
FOLLOWUPTESTING(DRTESTING),IT HASDECLINEDFORSECONDLEVEL 
CONFIRMATORYTESTING. 
Figure  1 depicts  the trend  in donor  retention  at DR and CT testing at intervals  between 
September  1993 and September  1995. 
FIGURE  1 
86% Trends in Donor Retention at DR and CT 
September1993- September,1995 
84% 
82%1  Legend 
82% 
80% 
March1994  MarctI1995 
Se@ 993  seA35  serJ1935 
Source: NMDP,RegistryStatistics  Analysisby OIG/OEI 
The NMDPidentifies  four reasons  that an individual  may not come forward  for further 
@Stkgj at either  DR or CT: 
- Unable to contact.  The donor center  was umble  to contact  the donor.  For 
example,  the donor may have moved  and left no forwarding  address. 
- Not Interested.  The donor no longer wishes to be considered  as a marrow 
donor. 
- Medical  deferment.  Because donation requires  a surgical  procedure,  donors with 
certain  medical  conditions  are disqualified. 
4  Temporarily  unavailable.  The donor  is interested  and medically  appropriate,  but 
his or her schedule  is incompatible  with the required  time frame.  For 
example,  the donor may be traveling  outside the country,  or may be umble 
to take time off from work to come to the donor center  for testing. 
The NMDPremoves  donors who are classified  as unable to contact or not interested  from 
the active  registry;  they will no longer appear  as a potential  match  in the fiture.  In some 
cases,  donors  with medical  deferments  would be removed  from the list (e.g.,  a permanent 
condition  that renders  the person  inappropriate  for donation),  although  in other  cases 
(e.g.,  pregnancy)  the donor might appear  for future matches.  Those who are temporarily 
unavailable  remain  on the list. 
Donor  centers  and NMDPhave put substantial  effort  into improving  how they maintain 
their donor  lists.  Donor  centers use three  strategies  to help keep their lists up to date: 
Annual Newsletter 
Eighty-three  of 86 centers  responding  to our survey told us that they use the NMDP 
newsletter  to update  their lists,  while  13 of 84 centers  told us that they use their  own 
newsletter,  either  independently  or in conjunction  with the NMDPnewsletter.  Fifty-one 
centers  rated  the newsletter  as their most successful  strategy  for updating  donor  lists.  The 
NMDPworks with an independent  mailing  house to send an annual newsletter  to all 
donors.  The newsletters  use the donor centers  return  addresses,  rather  than the NMDPS. 
When  newsletters  are returned  as undeliverable,  centers  flag those donors.  At that point 
these centers  try to contact  donors using the contact  list that the donor provided  when 
signing up as a donor.  Some centers  put substantial  effort  into this activity  as a way of 
updating  their  lists;  other centers  we spoke with, however,  believe  that it is more cost 
effective  to put their  resources  into tracking  down donors once they have been identified 
as potential  matches,  rather  than merely  keeping  lists up to date. 
Donor  Identification  Cards 
In our survey,  69 of 86 centers  reported  that they give donors a donor identification  card 
prepared  by NMDP,while  13 centers  issue their own donor identification  card.  Seven 
centers  rated  the donor  identification  card  as the most successful  strategy  for updating 
donor  lists.  The donor  identification  card serves as an ongoing reminder  of the 
individuals  participation  in the program.  It also encourages  donors to call their center 
with a change  of address  whenever  they move. 
Tram  Union Credit  Service 
Tram  Union,  a computerized  reporting  service,  has been available  to donor centers  for 
over 2 years.  Three  centers  rated this as the most effective  strategy  for updating  their 
lists.  The NMDPencourages  donor centers  to use this service,  which we were told cost 
$1.25  per  search.  The donor center  logs into a computer  system,  enters the donors  last 
5
 known address  or social security number,  and the system tracks that person  through  credit 
card or other activities.7 
Donor centers  vary in the approaches  they take to finding donors and the priority  they 
give to different  methods.  One large donor center  told us that its first step is to try to 
contact  the donor by phone;  if that approach  fails, the center  sends a letter to the last 
address,  followed  by a followup letter if no response  is received.  Finally,  they turn to 
Trans  Union.  Another  large donor center  we met with told us that it first turns to Tram 
Union for each DR request  that comes in. 
	 The donor retention  rate at DR testing improved  to 73 percent for  the year  ending 
September  1995,  up from  66 percent for  the year  ending September  1993. 
The NMDPprocessed  36,012  patient-directed  requests  for DRtesting  in the year  ending  in 
September  1995, down from 38,891  in the period two years earlier.  (Appendix  A 
provides  detailed  data on requests  made during these time periods.) 
Donor centers  greatest  improvement  was in the unable to contact category.  This 
category  accounts  for almost half of donors who are lost.  Donor centers  categorized 
12 percent  of DR requests  as unable to contact during  the period  ending  in September 
1995, down from  17 percent  in the period 2 years earlier. 
The other three  categories  remained  about the same over this period.  Temporarily 
unavailable  improved  slightly,  from 9 percent  to 7 percent  of DR requests.  Those  in the 
medically  deferred  category  increased  from 2 percent  to 3 percent,  and those who were 
not interested  continued  at about 6 percent. 
We analyzed  data for 93 donor centers  that operated  during this entire  period.  As Table  1 
shows,  62 centers  retained  a higher percentage  of donors at DR request  in the year ending 
September  30,  1995 over the period  two years earlier.  In 31 centers  the retention  rate 
was lower. 
II  1995Rateas a Percentof 1993Rate  I  Numberof Centers  II 
120%- 140%  5 
I 
110%- 120%  16 
100%- 110%  I  41 
I 
90 %- 100%  28 
I 
80%-90%  3 
Source:NMDP,RegistryStatisticsO, ctober1993and 
RetzistrSvtatisticsO. ctober1995  Analysisbv OIG/OEI 
6
 F	 For the 6 months ending September  30,  1995 donor centers success  in 
finding  donors for  DR testing  ranged from  48 percent  to 100 percent,  with a 
median  of 82 percent. 
	 For that 6-month period,  18 of 97 centers retained at least 90 percent  of 
those sought for  testing;  8 centers retained  less than 60 percent. 
We examined  in detail  NMDPSdata on retention  at DR for requests  resolved  in the six 
month period  between  April  1 and September  30,  1995.  During  that period,  donor 
centers  received  17,781 requests  for DR typing and filled  12,951 of them (73 percent).  It 
is important  to recognize  that requests  for DR testing  are highly skewed among  a few 
centers.  Thirteen  of the 97 centers  received  more than 50 percent  of the total requests  for 
DR typing  and accounted  for 48 percent  of all donors that were retained  during  thk 
6-month  period. 
As table 2 shows,  the percentage  of donors retained  at DR is inversely  correlated  with the 
size of the donor center,  as measured  in the number  of DR requests  received.  The smaller 
donor  centers  tend to retain  a higher proportion  of their donors than do the large centers. 
However,  there  is substantial  variation  within each size group,  and we were unable  to fmd 
a definitive  explanation  for these differences.  One possible explamtion  is that some large 
centers  operate  in large  geographic  areas,  where distance may exacerbate  problems  of 
actually  getting  donors  to come  in for testing. 
Other  large centers  operate  in urban  areas,  where  a relatively  mobile population  may 
make it difficult  to keep in contact  with donors.  Yet a third explanation  may simply be 
that the differences  relate  to the scale of operations.  For example,  a donor center  with 75 
DR requests  in a six-month  period  receives  about 3 requests per week;  on the other hand, 
a center  with 450 requests  in that period  gets 2 to 3 requests per day. 
7
 .	 Thedonor  retention  rate atcTtwting  dwlined  to75percent  for the year 
ending  September  1995, down from 81 percent  for the year ending September 
1993,  in COIItHMt  tO  hIIl)rOVf3111eIIh  in  retention  at DR. 
Themmpprocessed9,454cTr  equestsfor  the  year ending September  1995, a37  percent

increase  over the 6,901  requests  in the year ending September  1993.  (Appendix A

provides  detailed  data on requests  made during  these time periods.)

Donor  centers  greatest  difficul~h  retitig  donors wash  tieunable  to contact

category,  which accounts  for about one-third  of the donors lost at CT.  Donor centers

categorized  7 percent  of CT requests  as unable to contact during the period ending  in

September  1995, up from 4 percent  in the earlier  period.  The other  3 categories  increased

slightly over this period:  Temporarily  unavai[ab[e grew from 8 percent  to 9 percent,

medically  deferred  from  3 percent  to 4 percent,  and those who were not interested  from

4 percent  to 5 percent.

We analyzed  data for 92 donor centers that were in operation  during  this entire period  to

identi&  how many had improved  their performance  (Table 3).  In contrast  to retention  at

DR, only 29 centers  (32 percent)  retained  a higher percentage  of donors  at CT request  in

the year ending  September  30,  1995 over the period two years earlier;  in 63 centers  the

retention  rate decreased. 
II1995Rateasa Percentof 1993Rate  / Numberof Centers 
II120%- 130%  14 
1 
110%- 120%  6 
I 
100%- 110%  119
I 
90 %- 100%  29 
I 
80 %-90%  I 24 
lessthan80 %  10 
Source:NMDP,RegistryStatisticsO, ctober1993and 
Re~istrvStatisticsO. ctober1995  Analvsisby OIG/OEI 
F	 For the 6 months ending September  30,  1995 donor centers success  in 
retaining  donors for  CTtesting rangedfiom  43 percent  to 100 percent,  with 
a median  of 80 percent. 
b	 Of 5,155  CT requests in that 6-month period,  1,279  (25 percent)  donors did 
not come forward for  testing. 
8
 k	 Twenty of 97 centers retained more than 90 percent  of donors;  7 centers 
retained less than 60 percent. 
Table 4 presents  data on retention  at CT for requests  resolved  for the 6-month period 
between  April  1 and September  30,  1995.  As with DR retention,  the smaller  donor 
centers  tended  to have higher retention  rates.  Eleven  of the 97 centers  received  more than 
50 percent  of the requests  for CT tests and provided  50 percent  of the donors that were 
retained  during  this period. 
~TENTION  RATES  AMONG  DONORS  FROM  RACIAL  AND  ETHNIC  MINORITY  GROUPS  LAG 
BEHIND  THOSE  FOR  WI-HTES. 
Although  recruitment  of minority  donors has increased  more rapidly  than among  white 
donors  in recent  years,  a lower proportion  of donors from minority  groups are coming 
forward  for followup  testing than are whites. 
At first  level followup  testing  (DR testing)  retention  rate for  minorip  donors 
improved  to 66 percent for  the year  ending September  1995,  up from  55 percent for 
the year  ending September  1993.  In comparison  the retention  rate among white 
donors grew j70m  71 percent  to 76 percent. 
However,  retention  of minority donors at second  level followup  testing  (n  testing) 
declined  to 60 percent for  the year  ending September  1995, down from  67percent 
for  the year  ending September  1993,  while it fellfiom  83 to 81 percent  among 
white donors. 
9
 Table 5 presents  data on retention  rates specifically  for minority  donors at first level 
followup  (DR testing)  and second level followup  (CT testing). 
EthnicandRacialGroup  DR Testing  CTTesting 
Ott 1, 1992- Ott 1, 1994- Ott 1, 1992- Oct 1, 1994-
Sept30, 1993  Sept30, 1995  Sept30, 1993  Sept30, 1995 
White  71%  76%  83%  81% 
Hispanic  56%  63%  70%  62% 
Black  55%  68%  70%  59% 
Asian/PacifiIcslander  47%  62%  59%  51% 
AmericanIndian/Alaska  71%  74%  69%  76% 
Native 
Totals:  66%  72%  81%  76% 
Source:NMDPRegistryStatistics  AnalysisbyOIG/OEI
EVEN THOUGHTHE DECREASEIN DONORRETENTIONRATESAT CO~RMATORY 
TESTINGIS SMALL,m STILLRAISESSOMECONCERNS. 
The NMDPand donor centers  have gained substantial  experience  over the past several 
years.  They have improved  registration  practices,  increased  donor education,  adopted 
new technologies  for locating  donors,  and developed  continuous  process  improvement 
indicators.  Consequently,  we expected  ongoing  improvement  in retention  at all stages of 
the process,  but we found that this was not the case at the CT stage.  Our review  identified 
three  factors  that may explain  this trend: 
.  Luck of direct donor involvement  and commitment  at the earlier DR stage. 
Donors  may be less likely to feel a direct  commitment  at DR testing for two reasons.

First,  increasing  numbers  of donors already  have been DR-typed.  Some donors have been

typed through  an earlier  patient-directed  request.  Other donors were DR-typed when they

first joined  the registry.  Special fimding has been earmarked  to DR-type all new minority

donors,  and some white donors,  at registration.  This  front end typing may provide  one

important  explanation  for the greater  decrease  in retention  at CT testing for minority

donors.

Second,  the NMDPhas recently  established  two central  repositories.  At initial registration,

the donor center  draws  an extra  sample of each donors blood,  which the NMDPstores  in a

repository.  The donors  blood  is not DR-typed at registration,  but when one of these

10  donors  is identified  as a potential  match,  the sample is withdrawn  from the repository  and 
DR-tested. 
Either  situation  obviates  the need for the donor to physically  go to the donor center  at this 
stage.  Instead,  the center  contacts the individual by phone to gain formal permission  and 
to prepare  the donor  for the possibility  that additional  testing and donation  are possible. 
These donors  give their  verbal permission  at that time.8  However,  they do not need to 
make a direct  commitment  in time,  inconvenience,  or additional  blood donation  until the 
CT stage.  The director  of one donor center  we spoke with characterized  this difference  as 
active versus  passive commitment. 
  Potential  conflict  between  a rapidly growing  re~stry and donor education. 
The NMDP  has experienced  great  success in increasing  the size of the registry  list.  In an 
effort to expand  their  lists,  some centers  may not be doing an effective job  of fully 
educating  donors  at initial recruitment  about what will be required  of them in the event of 
a match.  The director  of one donor center  summarized  this concern  when she told us 
that,  If people  are to come for later testing  and donation,  it depends on how well we do 
our job  selling  at the front end.  We need to emphasize  timing and commitment  at every 
step.  
Organizing  registration  drives  is a major component  of donor center  work.  These drives 
frequently  focus on an individual  patient  in need of a transplant.  On our site visits we 
asked donor  centers  What makes a good donor?  Donor centers  told us that signs of a 
good donor  include  someone who reads all available  material,  asks serious questions,  and 
takes time to reach  a decision  to join  the registry.  To help donors reach  a decision,  staff 
at donor  centers  cited extensive  patient education  at initial registration  as critical.  Donor 
centers  told us that an important  part of this educatioml  process  is ensuring  that those who 
join  the registry  understand  that they are not joining just  for a patient  who is the focus of 
a particular  drive,  but for anyone who may eventually  need a transplant. 
We also heard  from some centers  that college  students are difficult  to find at later stages, 
because  they move often in their early years out of school.  Several centers,  however,  also 
told us that college  students were a primary  target of their recruitment  efforts. 
  No awareness  of problems  in CT retention  rate. 
Some donor  centers  may fail to recognize  the problems  we identified  in retaining  donors 
at CT.  Even though donor retention  is declining  at this stage,  donor centers  responding  to 
our survey  cited obstacles  to retention  less frequently  at CT than they did at DR. 
Our survey  asked donor centers  about obstacles  to DR and CT testing.  As Figure  2 shows, 
with one exception  (donor distance from center,  where  11 percent  cited  it as a problem  at 
CT versus  8 percent  at DR), obstacles  at DR typing were cited by about twice as many 
donor  centers  as they were at CT testing. 
11
 FIGURE  2

Source:  OIG/OEI survey of domestic donor centers,  August,  1995  n=  88 
We raise concerns  about the consequences  of thedeclining  m  retention  rate  for two 
important  reasons: 
.  Pa.tientexpecttions  arehighti  CT. 
When arequest  for CT testing occurs,  apatient  awaiting  atransplant  knows tiata 
potential  donor match has been identified.  This preliminary  match no doubt raises the 
hopes of the patient;  failing to retain donors at this stage means that the patients  hopes 
for a transplant  may have been raised unrealistically,  only to be dashed because  the 
potential  donor fails to come forward. 
.  Losing  donors at CT is costly to patients  awaiting  a transpkmt. 
The 55 NMDp-accredited transplant  hospitals bill patients  a mean charge  of $264 (range  = 
$200-$600)  for each patient-directed  DR test that is performed  on potential  donors.  If 
those donors  fail to come forward  at CT, the patient  still must pay for the DR testing that 
was done. 
12
 RECOMMENDATIONS 
The National  Marrow  Donor Program  (NMDP)has come a long way since its inception 
with a registry  of 8,000 volunteer  marrow  donors in 1987.  Today,  almost 2 million 
donors have joined  the registry,  and NMDPhas facilitated  over 4,000  bone marrow 
transplants  between  unrelated  individuals.  In this report  we raise concerns  about the level 
of retention  of volunteer  donors  on the registry  list:  Despite experience  in recruitment 
and education,  improvements  in technology,  and the implementation  of continuous  process 
improvement  measures,  the overall rate of donor retention  has not improved. 
We developed  our recommendations  to encourage  improvement  in donor retention.  We 
believe  that improving  this aspect of the program  will require  a partnership  approach 
between  HRSAand NMDP,and between  NMDPand its donor centers.  Consequently,  we 
direct  our recommendations  to both HRSA,as contractor  for the registry,  and to NMDP,as 
the holder  of that contract. 
THE  HEALTH  RESOURCES  AND  SERVICES  ADMINISTRATION  SHOULD  SPECIFY,  EITHER 
UPON  ISSUING  THE  FORTHCOMING  CONTRACT  OR  THROUGH  A FUTURE  MODIFICATION 
OF  THAT  CONTRACI,  THE  OVERALL  RETENTION  RATE  TO  BE ACHIEVED  BY  THE 
REGISTRY.  To develop  the appropriate  retention  rate,  HRSAshould work with NMDPand 
the donor centers  to develop  methods  for improving  overall  retention  and a plan to 
implement  these methods.  The implementation  plan should include a description  of 
actions  to be taken should the registry  or the donor centers  fail to meet the target  rates. 
We urge  mw  to specify target  retention  rates within the first year of the new contract. 
We also encourage  HRSAto assure that these methods encourage  retention  of donors  from 
racial  and ethnic  minority  groups. 
The current  HRSAcontract  with NMDPspecifies goals for overall recruitment  of donors and 
minority  donors,  and for the number  of transplants  to be performed  in each contract  year. 
However,  the contract  does not contain  goals for donor retention,  the key middle  step in 
that process.  We urge that fiture  contracts  specify retention  rates for both first attempts 
and subsequent  attempts  to contact  donors.  We believe that HRSAcan draw  on NMDPS 
expertise  to develop  minimum  retention  levels that can be realistically  achieved. 
TO  THE  EXTENT  THAT  RESOURCES  ARE  AVAILABLE,  THE  HEALTH  RESOURCES  AND 
SERVICES  ADMINKWRATION,  WORKING  WITH  THE  NATIONAL  MARROW  DONOR 
PROGRAM,  SHOULD  SUPPORT  DEMONSTRATION  PROJECTS  THAT  TEST  ALTERNATIVE 
STRATEGIES  FOR  RETAINING  DONORS.  We urge that particular  attention  be paid to 
demonstrations  that seek to increase  the retention  rate among donors from racial  and 
ethnic minority  groups,  including  efforts to overcome  language barriers  that may suppress 
retention.  We believe  that any such demonstration  projects  should contain  an evaluation 
component  to assess the feasibility  of these strategies  for broader  use. 
The NMDPhas increased  substantially  the number  and proportion  of minority  donors  on 
the registry.  Donors  from these groups,  however,  show lower retention  rates  than do 
13  white donors.  In addition,  because  an increased  number  of HLAcombinations  occur 
among minority  groups,  many minority  patients  face serious problems  in fkding  a 
matching  donor.  These difficulties  make strategies  for improving  retention  rates among 
minority  donors  a priority. 
NMDPSHOULDWORKWITHDONORCENTERSTO DEVELOPANDIMPLEMENTMETHODS 
FOR  IMPROVING  DONOR  RETENTION  AT  BOTH  THE  FIRST  ATTEMPT  AND  SUBSEQUENT 
ATTEMPTSTo  CONTACT  DONORS.  we  hope that imprOving retention  among  donors  from 
racial  and ethnic  minority  groups will be a focus of these efforts.  We encourage  NMDP 
also to put in place plans for evaluating  the success of these methods  and a strategy  for 
dissemimting  successful  methods to donor centers.  We offer a number  of options  that the 
NMDPmight use,  but we also welcome  additioml  ideas from that organization  on how to 
achieve  this goal.  Possible  options might include: 
(cid:1) Spec@ing  a retention  rate in its operating  agreement  with each donor center.  The 
NMDPoperating  agreement  whh each donor center  does not specify levels of 
achievement  for retention  at ehher  DRtyping or CTtesting.  Just as we urge  HRSA 
to establish  an overall  goal for retention,  we believe  that defining minimum 
expectations  would provide  an incentive  to the donor centers. 
(cid:1) Augmenting  pe~ormance  indicators  to emphasize  continuous  improvement  over 
time.  The NMDPhas in place performance  indicators  for each donor center  that 
address  retention  at DR and CT.  Each center  receives  a monthly  report  on hs own 
performance  on these indicators  and a summary  of the networks  overall 
performance.  Including  monthly trend information  might better  inform  donor 
centers  about their progress  over time and encourage  ongoing  improvement. 
(cid:1) Enhancing  donor education  at initial recruitment.  Educating  donors  at recruitment 
is the first step in the marrow  donation process.  This education  should stress the 
importance  of timing and commitment  if the donor  is called for further  testing. 
(cid:1) Emphasizing  to donor centers the need to jidly  educate donors when  contacting 
them for  DR testing.  In the future,  an increasing  proportion  of donors  on the 
registry  will have their blood stored in the repository,  or will have been DR typed 
already.  This trend will exacerbate  the problem  of passive commitment  identified 
in this report.  Rather  than merely  obtaining  a donors permission  through  a phone 
call,  more  complete  education  about commitment  and expectations  might alleviate 
this problem.  The NMDPcould develop  a script or checklist  of points that donor 
centers  should cover when contacting  donors at request for DR typing. 
(cid:1) Working with HRSA to devise a strategy for  improving publicity  around the need for 
retention  and donor maintenance,  as well as continuing  current eflorts  on the need 
for  recruiting  donors.  Much publicity,  both local and national,  has been given to 
encouraging  people to join  the NMDP. Joining the registry,  however,  is only one 
step in the process.  Publicity  that also emphasizes  the importance  of commitment 
for those who are actually called  as potential  donors could help improve  retention. 
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  and received 
comments  on the report  from the National  Marrow  Donor Program  (NMDP). 
Use of CT  and DR  vs.  Overall  Retention 
The HRSAand NMDPquestion why we compared  changes  at first level followup  (DR 
typing) and second level conilrmatory  (CT) testing,  rather  than at first attempt  and 
subsequent  attempts  to contact  donors.  our  analysis used DR typing and CT testing 
because  the NMDPand donor centers  use these terms.  We continue  to use that framework 
in this final report.  We agree with HRSAand NMDPthat it makes conceptual  sense for the 
program  to move toward  reporting  data in terms  of first attempt  at donor contact  and 
subsequent  attempts.  Given developments  in practice--e. g.,  most donors now are typed 
initially  at registration,  blood samples are maintained  in the NMDPrepository,  and DNA 
testing  is becoming  more  common--this  approach  appears  to be more appropriate. 
One step that could further  this reconceptualization  about retention  rates is for NMDPand 
donor centers  to use that terminology.  For example,  the NMDPSCPI indicators  continue 
to describe  events at DR and CT testing,  and data are reported  using that framework. 
Nevertheless,  we have changed  our recommendations  to encourage  overall  retention,  at 
both first  and subsequent  contact  attempts.  We are concerned,  however,  that merely 
reclassifying  how retention  is described  begs the larger  and more critical  issue that we 
raised  in our draft  report  and continue  to raise in this version:  Despite  substantial 
experience,  which  includes  improved  registration  practices,  increased  donor education,  use 
of new technologies,  and the development  of continuous  process  improvement  indicators, 
the overall  retention  rate simply is not improving. 
We are pleased  to learn that NMDPhas begun to support research  to understand  why 
donors elect not to participate  when called for further  testing.  We hope that this research 
will lead to better  retention  rates and improve  the odds of finding a donor for 
transplantation  when needed. 
Specification  of retention  rate 
HRSAagrees  with the substance  of our recommendation  that the contract  should specify the 
retentio-n rate to be achieved,  but the agency raises concerns  that implementing  these 
recommendations  will take longer than we recommended  in our draft report.  (In that draft 
report,  we had proposed  implementation  prior  to awarding  a future contract  for the 
registry,  which HRSAnotes should take place in the Spring of 1997.)  We recognize  that 
these are complicated  subject areas;  however,  we do not believe that a complicated  issue 
should give HRSAor NMDPlatitude to take any longer than necessary  to achieve them. 
Accordingly,  we have changed  our recommendation  to specify the appropriate  retention 
15  rate through  a contract  modification,  rather  than prior  to issuing the new contract.  We 
urge that these changes  be implemented  within the first year of the new contract.  We 
believe  that such a time frame  is adequate to achieve these changes. 
We are concerned  that an open-ended  time frame could result  in unnecessary  delays.  We 
wish to state clearly  that developing,  implementing,  and enforcing  performance  standards 
and efficiency  measures  are important,  and need to be accomplished  as quickly  as 
possible. 
Developing  methods  for improved  retention 
HRSAsupports  this recommendation,  but urges us to stress overall  retention  more than the 
DR and CT rates.  We have modified  the recommendation  to reflect this change.  We also 
urge the NMDPto pay attention  to donors from racial  and ethnic minority  groups.  We 
encourage  NMDPalso to put in place plans for evaluating  the success of these methods,  as 
was suggested  by HRSA. 
Demonstration  projects 
HRSA  supports  this recommendation.  We added language to our recommendation  about 
fimncing  demonstration  projects  to encourage  demonstrations  that pay attention  to 
overcoming  language  barriers,  as recommended  by the Assistant  Secretary  for Health. 
We also urge the demonstrations  to contain  an evaluative  component  to assess the broader 
feasibility  of these demonstrations  tested. 
Other Comments 
We have changed  language  in several places  in the report  as recommended  by the Office 
of the Assistant  Secretary  for Health.  ASPEhad no comments  on the report. 
16
 APPENDIX  A 
CHANGES  IN  DONOR  RETENTION  RATES 
Changes  in DR Retention  Rates

Years ending Sept  1995 vs. Sept  1993

DR  Unable to  Not  Medically  Temporarily 
Requests  Contact  Interested  Deferred  Unavailable 
October,  1994- 36,012  4,251  2,186  940  2,550 
September,  1995  (11.8%)  (6.1%)  (2.6%)  (7.1%) 
October,  1992- 38,891  6,519  2,321  834  3,436 
September,  1993  (16.8%)  (6.0%)  (2.1%)  (8.8%) 
CT  Unable to  Not  Medically  Temporarily 
Requests  Contact  Interested  Deferred  Unavailable 
October,  1994- 9,454  661  434  357  835 
September,  1995  (7.0%)  (4.6%)  (3.8%)  (8.8%) 
October,  1992- 6,901  278  248  227  578 
September,  1993  (4.0%)  (3.6%)  (3.3%)  (8.4%) 
1
 TEXT  OF  COMMENTS  ON  THE  DRAFT  REPORT 
Health Resources  and Services Administration  . . . . . . . . . . . . . . . . . . . . . . . .B-2 
Assistant  Secretary  for Heal&  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..  B-6 
National Marrow Donor Program  . . . . . . . . . . . . . . . . . . . . . . . . . . . . ..  B-8 
Note:  The Health  Resources  and Services  Administration,  the Assistant  Secretary  for 
Health,  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  National 
Marrow  Donor  Program:  Effectiveness  in Retaining  Donors.  
B-1
 Heakb  Resources and 
Servicas Administration 
7CT  n 3  ;% 
Rockville  MD  20857 
TO:  Inspector  General,  DHHS 
FROll:  Deputy  Administrator 
SUBJECT :	 Office  of  Inspector  General  (OIG)  Draft  Reports,
lfNat~On~~  Marrow  Donor  pro~arn  (NMDP) s 
1)  Financing  Donor  Centers  OE1-01-95-00123 
2)  Progress  in Minority  Recruitment  0EI-01-95-00120 
3) Geographic  Overlap  Among  Donor  Centers 
OEI-01-95-00122 
4)  Effectiveness  in  Retaining  Donors  0EI-01-95-00121ff  
.~ttached 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

such  as  restructuring  of  donor

examination  regarding  some  issues, 
centers,  implementation  of  performance  indicators!  and

before  specific  changes  are 
specification  of  retention  races, 
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 Dsirdre  Wals.h
  on x35181.

k 
+%J hn D. Maho ,y 
~ 
Attachment

B-2
 OIG  Reuort:  Effectiveness  in  Retaininq  Donors  0EX-01-95-00121 
GENERAL  COMMENTS 
NMDP commented  that  the  number  of  donors  who  are  DR  typed  at 
enrollment  has  increased.  The  first  attempt  to  COntaCt  donors  is 
more often at the confirmatory  testing stage rather than at the 
DR stage.  NMDP, therefore,  recommends  that  retention  needs  to  be 
evaluated  based  on  the  first  attempt  and  subsequent  attempts 
to  contact  donors,  rather  than  separating  DR and CT retention. 
OIG  RECOMMENDATION: 
HRSA should specify,  in any future contract  fOr operating  the 
regi.stry~  the  retention  rate  to  be  achieved.  We  urge  that  future 
contracts  specify  retention  levels  at  both  the  IIR  and  CT  stages. 
NMDP should work with donor centers to develop methods  for

improving retention  at CT testing.

HRSA RESPONSE

HRSA concurs with the recommendation  that HRSA specify the 
retention  rate to be achieved,  but does not concur  that HRSA 
should specify  the retention  rate in its next contract  for 
operating the registry.  There is insufficient  time, prior to the 
next contract  award, to develop  a retention  rate that is

realistic  and operational.

A first step is for the contractor,  in consultation  with HRSA, to

develop target  retention  rates and methods  for implementing  them.

Establishing  Continuous  Process  Improvement  (CPI) indicators  for

donor retention  should include an adequate understanding  of why

volunteers  are not retained  and effective methods  for improving

retention.  NMDP recommends  that retention needs to be evaluated

based on the  first attempt  and subsequent  attempts  t-ocontact

donors, rather  than separating  DR and CT retention,  particularly 
because  donors  are  increasingly  DR typed at recruitment  and 
contact for CT may be the first attempt to contact  donors  for 
follow-up testing.  Previously,  donors were contacted  first for 
DR typing and subsequently  for CT.

HRSA expects that  the  next  contract  will  require  a  report  on 
effective  methods  of  improving  retention  and  a  plan  for 
implementing  continuous  process  improvement  measures  for  donor 
retention.  The  implementation  plan will  include disciplinary 
actions  for donor centers  and recruitment  groups that do not meet

the CPI goals.

B-3
 HRSA  agrees  that  there  is  an  urgent  need  for  a  thorough  analysis 
of  donor  retention.  As  more  donors  are DR typed  at recruitment, 
retention  at CT reflects  overall retention  (DR and CT) .  HRSA

suggests  the following modification:

HRSA should  work  with  the  contractor  and  the  donor  centers 
to  develop  methods  for  improving  overall  retention,  an 
implementation  plan,  and  disciplinary  actions.  Methods  for 
improving  retention  should  take  into  account  retention  of 
minority  donors  as  well  as  cost  issues  associated  with 
donation. 
This recommendation  should precede  the recommendation  about

demonstration  projects  to emphasize  the importance  of overall

retention  of donors  at both the DR and CT stages.

OIG  RECOMMENDATION 
To the extent  that resources  are available,  HRSA, working  with 
the NMDP,  should  support demonstration  projects  that test 
alternative  strategies  for retaining  donors.  We  urge  that 
particular  attention  be paid to demonstrations  that seek to 
increase the retention  rate among donors from racial  and ethnic 
minority  groups. 
HRSA RESPONSE

HRSA agrees with this recommendation  and specifically  with the

recommendation  that the approach to contacting  donors  for follow-

up testing  be more  standardized.  Evaluating  alternative

strategies  for retaining  donors and facilitating  transplants

should be a first step.  Identifying  centers that do a

particularly  good  job at retaining  donors, particularly  minority

donors,  and noting the strategies  used by them would provide

valuable  insights.  HRSA supports the idea that HRSA work with

the NMDP to identify alternative  strategies  and evaluate  their

feasibility  for broader  use.

OIG  RECOMMENDATION: 
The  National  Marrow  Donor  Program  should  work  with  donor  centers 
to  develop  methods  for  improving  retention  at  confirmatory 
testing. 
HRSA RESPONSE

HRSA concurs  with the recommendation,  but agrees with NMDP that 
the overall  retention  rate is more  important than the DR and CT 
rates  given  that  more  donors  are being A, B, and DR typed at 
enrollment.  Therefore,  tracking retention  at the first attempt 
B-4
 and  subsequent  attempts  to contact  donors  may be more  meaningful 
than  retention  at DR and CT. 
The OIG Report  suggested  possible  OptiOns  for improving retention

at confirmatory  testing.  Some of these  options,  such as

specifying  a retention  rate in the oPeratin9  a9reement  with each 
center, require consideration  and development.  In  addition, 
development  of strategies  to improve retention,  including  donor 
education  and publicity,  is important  but may not need to be 
specified.

Additional  strategies,  directed  at facilitating  the transplant

prccess %y  improving retention,  may be even more important  but

more difficult  to develop.  Therefore,  some IWntlOII  of eValUatiIIq

as well as implementing  strategies  for maintaining  contact  with 
donors  might  be  useful. 
B-5
 Office  of  the Secretary 
DEPARTMENT  OF HEALTH  AND  HUMAN  SERVICES 
AuG 28  IW  Assistant  Secretary  for  Health 
Office  of  Public  Health  and  Science 
TO:  hspectoGre
 neral  Washington  O.C.  20201
FROM:  Assistant  Secretary  for Heaith 
SUBJECT:  OIG Drafl Reports on the National  Marrow  Donor Program 
. 
Thankyou fortheopportunittoyr eviewtheOffIcoef theinspectoGre nerals  Dratl Reports on
the National Marrow Donor Program.  I am pleased that in generaI the reports show that much 
progress has been made.  However,  the reports also showed  that there are additional  areas where 
the ileparunemnuts tfocusits attentioTnh.e recommendationcso ntaineidn theser eportasre
importanatn dshouldbeimplementeads quicklays
 possible.
Attacheadr eseveraalr easw hich 1 believseh ouldbeaddresseidn thereportsT.h ankyouforthe

opportunity to review these important  reports.  If you have  any questions  on the concerns raised, 
please calI Mr. Matthew  Murguia  of the Office of Minority  Health  at 301-443-9923. 
/7Lf7J-cL-
PhiI1iKp 
Lee,M.D.

Attachment

B-6
 OIG  DRAFT  KEXVK1 S ON

THE  NATIONAL  MARROW  DONOR  PROGRAM

REPORT:  Progress  in Minority  Recruitment 
 
	 TIWuse of the term  Caucmim  ~d  wtites  are interckgeably  used throughout the 
report.  OIG may consider  using the OMB Directive  15 classification  for describing the 
various raciaf/ethnic  groups,  which are white, black, AsiWacific  Islahder, American 
Indian/Alaska  Native. and Hispanic, 
	 There should be some discussion  as to why the HRSA contract  does not speci& annual 
recruitment  goais for Native Americans  @age 6). 
There snouid be some discussion  as to why whites constitute  83% of preliminary 
	
searches.  but account  for 91 of transplants  (Table 3. page  10). 
%o 
	 The discussion  of mistrust  by Asims  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 CUM.WIcJompetency  training, including  biiingu.ai capability,  inciucied in 
the HRSA contract?  If not, this avenue should be explored  as a means to find bilingual 
staffi especially  those knowledgeable  about medical  terms. 
	 On page  1I. OIG should consider  a recommendation  which would require a pre-test with 
a sample of the target population  of educational  materials  prior to their use. 
  REPORT:  Effectiveness  in Retaining  Donors 
  The use of the terms Caucasian and whites are interchangeably  used throughout the 
report.  OIG may consider  using the OM~  Directive  15 classification  for describing the 
various  racia.i/ethnic groups,  which are white, biack. Asian/Pacific  islander. American 
IndiadA1aska  Native. and Hispanic. 
  Figure 2. page  12. shows that  10- 17 percent of donor centers  indicate  that language 
bmiers  present an obstacle  to search and workup.  However,  this issue does not appear to 
be discussed.  nor are any recommendations  to address this area contained  in the repott. 
Given [helargpeercentage  of centers reporting this as a problem.  and the stated fact that 
it is more dificuit  to maintain  minoritdyonors, an examination  of this issue would be 
appropriate. 
B-7
 Septembe4r,
 1996 
Wtmnnl  Marrow 
Donor  PrugriIrn 
TWloual Coonlinatinc  Ccntur 
.MXI Brnadwuy SUCA N.E. 
SuircXX) 
Mjnnqdis.  ~  5541~ 
612-627-5LW  Judith Brasiow 
I-KIX)-5Zf+7N?J  ,I   Director,  Division  of Organ Transplantation 
FAX: 61>627.W9  !	
Heaith Resources  and Services Administration 
of 1  Park Lawn Building
bard  Dilwdcm 
I 
Hcrbcn A. Perkinr.,M.D., Char  5600 FiSkS  Ianc -Room  729 
Jmmdumk  LeOlg, Vice CJunr  !  Rockviile,  MD 20857 
clam Paclilh Andmvs 
Uichmd i+. Asler.M.D. 
~ufcncc  D. Atlm, J.11 
Dear Ms. Bradow: 
Jn~h  f.BCJLM.D. 
%  DUPOIMM.D.,  D..?C. 
Rogcr  W. I?vnm. P?LD.  Thank you wry  much for providing  the National  Marrow  Donor 
f?anS. I+hcr.  J.D.. Ph.D. 
Duvid B. F~hflm8ycr. J.I>.  Pmgra.m@ (NMDP)  with an opportunity  to review  the draft  reports  of the 
J. Cunynn &rdmt.  J.D. 
Office of Inspector  General  (OIG), Depament  of H~th  and Human 
JohnA. lLUMII. M. Il. 
+edcnck J. %um.  M.. S.F-E-.M.B.A.  Services.  Ihedraft reports  were sent to members  of the Minority  Af&irs, 
.  ~J~  M  Hnrn+w.  M. D.. MS.  Membership  and Process  Improverncnt,  Donor  Recruitment  and Executive 
HR.  Ja!lt. M.D. 
MWCyA Kcman M.D.  Committees as well as the NMDPs Network  Evaluation  Advisory  Panel 
susan LcitmMn.MD.  and seiected members  of the staff. 
~ichoks J. NeulMusci. J.D., M.S.M. 
%tcr 1-f%gc.M-U. 
Lmmtb A. (CAP) %rlier  The comments receivedhave beencolIaredand a synthesis of the 
r=x 
Pccluum. M. D.. ph.D- responses is presented bciow.  The intent of the NMDP is not to criticize 
L[. GcrI. Fmk  E. l%cmcn. Jr. 
Kobcrt K. RUSSM.D.  the ciratl reports,butrather to add information from avarietoyf

EAV.trd P,%nt.  M.D.  respondents, ail of whom have been involvd  with aspects of donor center 
Ihwd  F. Stronc&  Ml). 
J&m S. Thurnpson.M-O.  operations and/or donorrmuitrnentA.s youknow theNMDP  is WCU 
mm  w WMUS. M.D.  aiong in its own analysis of donor center functions,  the findings  of which 
SIenn  N. WUIK. MD.  should provide  fiwtherusefulrecommendations. 
Antmnctte K Yxxe.Y. M. O., M.P.H. 
Admtmi E. It. Zumwnh.~r. 
GWwS.l+owM&O. ..Ph.D. Followintgh esummaryofcommenlson eachdrafrie porwte
  have. 
Chkflzzmutlvc  Ofilef  provided  our own iist of recommendations  for modification  of the OIG 
document. 
~wim  KmcritEa: 
R~rt  C. Guvm.  D.V.M. 
Admud E. R. Zumwdt. h. 
~u~  Gmwx Awacd: 
~c  Hnnnmoic U. W. 13il~Ymmg 
John A. Hamcn M.D. 
(:kck  bnfunL  MD. 
A mlldmmuw  effofi of che 
4mcricnn  Association 
Uf JNIxn.1J3ankl 
Amm-icml  Rd  CrO@ 
ct)oncil of Commnfuty 
Blood CenUm 
With funding (rum 
HIxlth  Rm_nmxs and SCfVICCS 
Admtmwntwn  and 
Navai Mdcal  Rcxmh  tmd 
Mwciup-ment Com~d  13Tectiveness  in Retaining Donors 
A ~u.rring  theme throughout  the comments an this section was how retention  should 
be dcflncd  and q-1~.  ~  Conciwion  of the dra~  report WaStit  the situation  was 
improving  for  DR  retentiou  but deteriorating  for  CI  retention.!  In factm,ost

donorscontacteadt
 m  =  ~~ng w~c~  for ~C fit*.  VCV fc~  DR typtigs 
lead to subsequent  CT wing  since DR ~ing  only ~=ly  proties  a ma~h.  Thus it is 
not .SU tising  to scc ~~  tic  ~~  ~d  ~  m-non  ~  ~  ~nverg~  ~  75 z  ~  fi@. 
of the Tau  that both represent  the fmt  attempt to contact a donor.  An alternative  would 3 
be to evaiuate  retention  on the  basis of first attempt  versus subsequent attempts.  
There  were  reservations  CKPrcssedabout.the establishment  of continuous p-s 
improvement  indicators  for donor  mention.  These  reservations  centered  on two 
pnzmisca:  1)  An -.~ti  -~ding  of why volunteen  are not retaind;  2) An 
imprecision  and over~p  m @  ~~gofies  (NI,  TlJ, etc.)  used  to describe donor  status 
and a resultant  concern LIULfacto=  ove~ which  donor  centers  have no control  would  be 
(mrnburse)  them.  To obrmn betrer information about the first premise, 
US~  to  x-ate 
Galcn Swirzer,  Ph.D.  of the Umversuy  of Pittsburgh is about to embark upon a study 
of the reasons  mp  do~fi  el=t  not to p=icipate  wkn  mllti  for tlrther  testing. 
The repofi  recommendation  for a more standa.rdkd  approach (script  or checklist  of 
poims)  m contacting  donors for follow+p  testing was thoughttobeberxficial.

An appropriate  caveatin mrnpfi~g  the abili~  of donor een!ers to retain donors was 
that of donor ~nkr  age.  CO~arrsoII  of retendon rates for old  ccntxxs (many 
volunteers ttawng been -Iti  five or mom years ago) versus young c- are 
inherently  inequitable. 
Itwas weilreco@zed thatmany of the ideas for improving donor retention  were fikely 
to mrne withas@.&ant cost.It was agreed unanimously that an increased sensitivi~ 
to donors  and their concern  on the part of donor center personnel was both desirabk 
and cost effedvc. 
Recommended  Modifications  to the  DraR Report: 
The improving  DR retention  and dctcrioradng  CT retention is an artifact  caused 
	
by the fact that Incm=hg  proportions  of quested  donors  have  already  been 
DR typed.  we need tOcompare effectiveness  at tit  donor  contact,  whether  for 
DR or CT. 
Factors  involved in donor retention are too complex for a simplistic comparison 
	
of retention  rates.  We  a- that there  is an urgent  need  for a thorough  anaiysis 
of this probIcm,  whxch we have  already  begun. 
B-9
 We are  ahe.ady embmked  UPOncon~j~i?g  tie  effo~  be~  wi~  -se  OIG  ~  ~o~  ~r 
own  detailed  evaluation  of cafi  to recm~t donqrs and remeve  them for donation  is well  under 
way.  The effectosf geo~aphlc  overl~  ~  be~  ev~wti  byourNeWork  Evaluation 
Advisory  Panel  and  by several  committees.  Minority  recmitmcnt  approaches  and donor 
retention  are areasof high  conum,  being  admti  by our  Minor@  Affairs  Comm.iti,  the 
Donor  RecruitrmxX  Comrnittt%,  and theMembership and Process Improvement  Committee. 
These are aJl high priority  iterns for our Board of Directors,  which wNbe reviewing  these 
documents at its regular  meeting in several weeks. 
We hope that you find these comments helu. fd.  The NMDP thanks Youfor sharing  these draft
reports  and  looks  foxward  to a continuing collaboration  in irnprovi~- all aspects  ofdonor 
center and remitment  group operations. 
Herbert  A.  Perkins.  M.D. 
NMDP  Board  Chair 
. 
B-10
 APPENDIX  C	
ENDNOTES	
1. National  Marrow  Donor Program,  The Living  Gijl of Life. 
2.	 Bone Marrow  Transplants  -A  Book of Basics for  Patients  (reprtited  by NYsEwET,  mc. 
with permission  from BMTnewsletter),  chapter  4, pp.  35-36. 
3.42  U.S.C. $274k(b)(l)-(7) 
4.	 Grant money  from the Office of Naval Research  pays for minority  donors  to undergo 
initial HLA-DRtyping,  which is a higher level of testing than most Caucasian  donors would 
initially undergo. 
5. Ninety-five  percent  of new donor centers have blood samples  sent to one of two NMDP 
repositories.  When a potential  donor is contacted  for DR typing,  the donors  blood can be 
directly  sent from the repository  to a lab for testing.  However,  the donor must still be 
contacted  for consent. 
6.	 In addition to the DR typing and additional  confkrnatory  testing,  the donor center  is 
responsible  for ongoing donor mamgement.  This can be a lengthy process,  involving 
counseling,  advocacy  and other aspects of donor education. 
7.	 The accuracy  of this system is unclear.  During  our research,  a donor center  performed 
a search using Tram  Union for the two OEI interviewers.  One OEI staff member,  in his 
mid-40s  and residing  in the same home for 8 years,  appeared  accurately  in the system. 
The second OE1 staff member,  in her mid-20s,  yielded  much less reliable  data.  Using her 
social security  number,  Trans Union listed the university  from which she graduated  5 
years earlier  as her most current  address,  even though she had moved half a dozen times 
since then.  A second search using her last known address posted the true second-to-last 
address but listed her as having an old telephone  number  and incorrect  social security 
number. 
While  we do not generalize  from this sample of two cases,  our experience  raises  an 
important  concern  that NMDPand donor centers  need to be aware of  College  students are 
a prime  recruiting  target  for NMDPdonor centers.  Such people move frequently  in their 
years  immediately  following  graduation,  making them difficult  to track  down in response 
to DR and CT requests.  But our experience  makes it questiomble  if the software  is up to 
the task required. 
c-1  8.  Most donor center  staff with whom wemetinformed  usthatthey  phoned  donors 
whose blood  was in the repository.  They try to contact them just  as they would donors 
who have to go a blood center  to have blood drawn for further  testing.  During  our site 
visits,  however,  we met with staff from one donor center  that simply forwarded  the 
request  to the repository,  and tried to make contact with the donor only at the CT stage. 
c-2