Report 7 of the Council on Science and Public Health (A-07)

Hematopoietic Stem Cell Transplantation:  Utilization of and Minority Representation on the National Bone Marrow Donor Registry

Summary

Objectives.  To review the process of hematopoietic stem cell transplantation, the role of the National Marrow Donor Program (NMDP) in facilitating such transplants, and concerns that the National Bone Marrow Donor Registry is underutilized and underrepresentative of racial and ethnic minorities.  Current projects by the NMDP to address such concerns, including the possible use of umbilical cord blood to alleviate underutilization and underrepresentation, are discussed.

Data Sources.  Literature searches were conducted in the PubMed database for English-language articles published between 1997 and 2006 using the search terms marrow donor, National Marrow Donor Program, and cord blood donation, in combination with the terms  minority and underrepresentation.  The U.S. General Accounting Office’s 2002 report entitled Bone Marrow Transplants: Despite Recruitment Successes, National Program May Be Underutilized and the NMDP Registry’s 2004 Biennial Report were primary sources of information.

Results. The Registry has grown by more than 30% during the last 8 years to contain over 6 million donors, and strives to facilitate transplants for all patients who need them.  Since 1998, the proportional distribution of racial and ethnic groups on the Registry has steadily approached their proportional distribution in the U.S. population.  However, African-Americans and Hispanics are still somewhat underrepresented within the total number of donors, and it is estimated that the Registry is used by only approximately one-third of patients needing transplants.  The NMDP has instituted programs addressing underutilization and underrepresentation, which have substantially increased the total number of donors and minority representation on the Registry.  The NMDP has also increased efforts to recruit donors of umbilical cord blood.

Conclusions.  NMDP-instituted programs have successfully increased the number of minorities represented in the Registry.  Other programs are addressing underutilization concerns and the increase in umbilical cord blood units available on the Registry.  The American Medical Association supports these efforts and encourages the NMDP to continue its work to recruit and retain donors, and to maintain a diverse Registry.

RECOMMENDATIONS

The following statements, recommended by the Council on Science and Public Health, were adopted by the AMA House of Delegates as policy and directives at the 2007 AMA Annual Meeting:

1. The AMA will  monitor National Marrow Donor Program (NMDP) efforts to maintain a Registry that is large in number, representative of all racial and ethnic groups, and diverse in its human leukocyte antigen (HLA) types; these efforts include projects that aim to increase minority recruitment, retain existing donors, and recruit donors to replace those lost through attrition. (Directive)
2. The AMA encourages the NMDP to expand its efforts to increase utilization of the Registry through projects aimed at increasing patient and physician awareness of the NMDP, and at reducing the time and cost of stem cell procurement. (Directive)
3. The AMA encourages the NMDP to enhance efforts to increase the number of umbilical cord blood units donated to the Registry; particular attention should be paid to increasing donation by minorities. (Directive)
4. The AMA encourages concerned physician organizations to work with the NMDP to develop information on umbilical cord blood donation to be disseminated in physicians’ offices during prenatal visits. (Directive to Take Action)
5. AMA Policy H-50.980 is amended  to read as follows:

The AMA supports efforts to increase blood donor awareness of bone marrow screening through the addition of a question on the questionnaire required for blood donation or through focused queries or invitations presented during the blood donation process that will assess the donor’s interest in obtaining information about bone marrow donation, and that information be provided to those donors who indicate an interest. (Policy)

Note: A revised version of this report has been published:  Johansen KA, Schneider JF, McCaffree MA, Woods GL, for the Council on Science and Public Health.  Efforts of the United States’ National Marrow Donor Program and Registry to improve utilization and representation of minority donors. Transplantation Medicine. 2008;18:250-259.

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