Blood stem-cell/bone marrow transplantation has been used to treat a wide variety of diseases, including acute and chronic leukemias, aplastic anemia, myeloproliferative disorders, and other fatal blood diseases. With hopes of facilitating potentially life-saving stem-cell transplants (i.e. bone marrow transplants) for patients in need, the National Marrow Donor Program (NMDP) Registry was created in 1986. Since its inception, the NMDP has facilitated approximately 13,000 transplants between patients and compatible unrelated volunteer donors. The NMDP maintains an internationally searchable database of over 4 million donors, which usually becomes the primary lifeline for patients in need of marrow transplants. In fact, more than three thousand patients are searching the Registry at any given time. Patients needing transplants first search their families while seeking a matched donor, since the odds of matching are highest within one’s group of relatives. Only about 30 percent of patients find a related match, while 70 percent must turn their hopes towards the NMDP for finding a compatible unrelated donor.
The chances of identifying an unrelated matched donor are best within one's own racial group. Currently, 69 percent of NMDP volunteer donors are Caucasian, leaving a critical shortage of minorities (i.e. African-Americans, American Indian/Alaska Natives, Asian/Pacific Islanders, and Hispanics) in the Registry (see chart (Word, 70KB) for distribution of donors). As a result, minority patients have an extremely difficult time in finding compatible unrelated transplant donors. While great progress has been made over the past decade, much needs to be done in assuring that the NMDP Registry is a racially diverse resource.
In order to understand the impact of the unequal access to transplants, one must first describe the issue of bone marrow transplantation via unrelated (i.e. allogeneic) donors. Patients requiring life-saving bone marrow transplants are fairly common. The NMDP Registry estimates that each year, 30 thousand patients in the United States are afflicted with diseases that can be cured by bone marrow transplantation. In a given year, a major teaching facility such as the Robert Wood Johnson University Hospital treats forty to fifty patients that require bone marrow transplants. Furthermore, allogeneic transplantation may potentially cure a wide variety of diseases. However, the decision to transplant is highly specific to factors such as patient age, disease status, and quite importantly, the availability of a matching transplant. Certain diseases such as Chronic Myelogenous Leukemia are cured only through transplants, while post-transplantation results often demonstrate an excellent prognosis marked by disease-free survival. Other diseases (e.g. multiple myeloma) are also only cured by transplantation, but are characterized by a high risk of treatment-related mortality. It should be noted that certain complications (e.g. graft rejection) are commonly manifested in the recipients of mismatched transplants. Nevertheless, it is apparent that bone marrow transplantation is the most effective treatment for a number of different malignancies. With this in mind, it is important to recognize that the NMDP provides an invaluable resource in facilitating potentially curative bone marrow transplants. Patients unable to find matching unrelated donors through the NMDP are often forced to settle on less than optimal alternate treatments.
In order to increase the numbers of minorities in the NMDP Registry, national recruitment groups are actively advocating on behalf of minority patients. For example, organizations such as the South Asian Marrow Association of Recruiters (SAMAR), Icla da Silva Foundation, and Cammy Lee Leukemia Foundation organize minority donor recruitment campaigns. Such efforts have been quite effective since groups such as SAMAR have registered over 35 thousand minority donors over the past decade. Nevertheless, minority patients are still much less likely to find compatible transplants than Caucasian patients. Our project goals are to:
- Rally student and community leaders behind the cause of minority donor registration
- Assist organizations/individuals in coordinating drives while increasing public awareness regarding the need for minority donors
- Advocate on behalf of patients needing transplants, while directing them to medical professionals who can answer any questions
- Reduce the racial disparity in minority patients’ access to transplants
- Establish a cohesive network through which numerous groups can unite
As ever increasing numbers of minority individuals are registered through our efforts, we hope that lives will be saved.