Patients whose HLA haplotypes are seriously under-represented in US and international registries are among those who face poor odds in being able to find an unrelated donor for BMT. This situation not only decreases their potential chances of survival , imposes more stress for patient families beyond the usual, but can also impact the search process itself.
Communication is key. The sensitivity with which the search coordinator and members of the BMT team address the inequitable donor pool situation can make a big difference. During the time that the MAVIN Foundation worked in donor recruitment and public BMT education, it was frequently observed that most healthcare professionals and/or staff of cancer and BMT organizations had little to no knowledge of issues facing mixed heritage patients and their families, unless from personal experience.
Part of the problem is that in spite of the greatly diversifying US population, the ranks of healthcare providers, especially at upper ranks, do not reflect that diversity. While patient families aware of the risks of the diseases and of the BMT procedure itself, many share that just having the medical team acknowledge the added difficulty of the inequalities in the donor pool would be helpful. Unfortunately this topic still is rarely discussed.
There are certain things that families can do to ensure that everything possible is done to find a donor for their loved ones. Many advise making a point of getting to know the search coordinator early on, face-to-face if possible, and letting him or her know that they want to be kept current on the progress of the search. New entries are added to the NMDP database every week, so ask that it be checked at least every other week. It may also be important for the search coordinator to check the databases of new international registries that are not yet part of BMDW, for both marrow and cord blood donors. While this will be done routinely at some major centers, this may not be the case at BMT centers everywhere.
Families can request that searches be done for cord blood donors, even if their child is now being seen at a BMT center that does not perform cord blood transplants. If a cord blood match is found, it might be possible o make arrangements to transfer to a different center. It might be be useful to look for donors from new registries in countries with whose residents the patient shares genetic ancestry. Sometimes it may be necessary for families to educate search coordinators about the historical genetic diversity of populations in diverse parts of the world.
Some families and their support networks, will want to become directly involved with donor recruitment and some may feel that they have no other choice. It is important for families to know that this decision is theirs alone to make, While physicians or personnel of a donor center, may offer advice, the final decision about working to recruit donors belongs to the family. For more information on this topic, see the discussion on Grass-roots Donor Recruitment.