Some patients in need of an unrelated BMT who have not had luck in finding one through the registries, may decide to get more personally involved in the donor search. There are various ways to do so, the most common being asking families, friends, and community members to register to become BMT donors; holding donor recruitment drives with support from a local donor center or affinity organizations; and raising funds to support donor testing.
BMT donor recruitment worldwide started through self-help efforts. Campaigns on behalf of specific patients were what led to the creation of donor registries in the US and other countries.
Community concerns about the disparities in the donor pool in terms of genetic heritage diversity led to the creation of a number of ethnic-specific donor recruitment groups in the US, and to the development of the MAVIN Foundation’s MatchMaker program. Civic prompting also led the NMDP to begin focused recruitment of minorities through its network of local donor centers, beginning in 1993. The well-known efforts of the families of the late Caitlin Raymond and Icla da Silva, and subsequently of BMT survivors Jay Feinberg and Pia Awal who respectively were of Korean, Brazilian, Ashkenazi Jewish, and East Indian heritages, led to the creation of new recruitment organizations.
The Caitlin Raymond International Registry now recruits donors in New England to serve all patients; the NY-based Icla da Silva Foundation is the largest US Latino donor recruitment group; Jay Feinberg and his family established Gift of Life Registry serving Jewish communities; and Pia Awal’s family started MatchPia, (no longer operational) which recruited many donors of South Asian backgrounds internationally. In addition, other recruitment groups , organizations, and more recently Internet-based efforts that focus on recruiting donors of Asian and Pacific Islander, African-American, American Indian, and mixed heritage ancestry continue to be developed
Each family will need to make their own decision on whether, and how much, to become involved in donor recruitment on behalf of their loved one. It is fair to say that, without discounting the important contributions of the above-named groups, that is unlikely the typical patient family would be able to replicate such efforts. Those cited were fortunate to be in a position to be able to utilize personal resources and organizational skills for community outreach. This is not a reality for most people, especially in today’s economic times. It is very important for families to understand that they are not personally responsible for finding a donor. Neither should they feel inadequate if they are not able to mobilize extensive recruitment campaigns on their own. Taking care of the patient along with family responsibilities are critically important. Remember too that the choice to become involved in any recruitment efforts is yours to make, not that of personnel of a donor center, transplant facility, or recruitment organization.
That said, many families also find that their relatives and friends want to do something concrete to help find a donor for a child they care about. Tapping into their natural desire to help can not only fulfill a personal mission, but can also help call attention to the persistent disparities in the donor pool and rally more people in the broader community to work for change. The efforts of individuals, employers, civic organizations of all types, businesses, faith-based communities, schools and colleges, can get involved with running or supporting donor drives in conjunction with donor centers, recruitment groups, and/or registries.
Washington State families interested in helping to recruit BMT donors should know that a state law passed in 2000 allows teens ( with parental permission) in our state to become unrelated donors. Senate Bill 6712, better known as the Michael Penon Law, states that “a person’s status as a minor may not disqualify him or her from bone marrow donation.”
The impetus for the law grew from efforts of a WA mixed heritage teen to be tested as a donor for another teenager with leukemia, with whom he shared similar Korean-, Mexican-, African-American ancestry. Michael Penon urgently needed a BMT to treat his rapidly-advancing leukemia, but had been unable to find either a family donor nor an unrelated donor in US and international registries. Eventually Michael’s friend was able to be tested , but did not turn out to be a match. Michael’s condition worsened rapidly and he passed away before a donor could be locate for him. A donor recruitment project called Hoopin’ for Life was created in Michael’s memory, as basketball was his favorite sport. Hoopin’ holds periodic youth basketball benefit tournaments and on-site donor registration drives in the Olympia, WA area. In February 2008, a school group for mixed heritage teens in Edmonds, WA sponsored a first-ever marrow donor drive at a high school, which also successfully recruited prospective donors in the community.
Advocates in WA state are continuing efforts to ensure that the Michael Penon law is implemented statewide; please contact MAVIN to learn more.
Security Alert for Mixed Heritage Patient Families
When planning a donor-specific recruitment campaign, it is important to decide how much personal information, such as full names and addresses, that you wish to share with the public. While maintaining privacy is important for everyone, there are special issues for mixed heritage families. We have learned that a number of hate groups, both in the Northwest and nationally, have taken previous MAVIN donor recruitment notices for mixed heritage children to use for their own despicable purposes via the Internet. We do not want to give these groups the attention that they seek, so we will not name them here. Fortunately, to date we have not heard of any of these groups approaching patient families, but this is something to be aware of. It is also important to become familiar with federal, state, and municipal laws against hate crimes, and the agencies that enforce them, in order to be able to quickly take appropriate action if necessary.