How Patients Can Advocate to Find a Bone Marrow Match
Patients should work directly with their transplant center to request assistance from the National Marrow Donor Program (NMDP) and consult with HLA experts to maximize their search strategy, particularly if initial searches do not identify suitable matches. 1
Primary Advocacy Steps
Work Through Your Transplant Center's Search Coordination
Request comprehensive worldwide searches through the NMDP, which serves as the single point of access in the United States for both unrelated adult donors and umbilical cord blood units. 1
The NMDP automatically searches approximately 9.5 million donors in its own file plus an additional 8.5 million donors listed in Bone Marrow Donors Worldwide (BMDW), covering international registries through the European Marrow Donor Information System network. 1
Ask your transplant center to submit searches directly to BMDW to view potentially matched donors in different formats, which may reveal additional options. 1
Request Expert Consultation for Difficult Searches
For patients with uncommon HLA phenotypes who don't find matches on initial searches, specifically request help from a local HLA expert or NMDP consultant to assist in identifying the best potential match. 1
Enlisting HLA expert assistance helps maximize available resources by focusing selection of donors for screening to those most likely to match, which is particularly important given the high cost of extensive donor screening. 1
Contact the NMDP Search Strategy team directly at [email protected] for search strategy assistance. [@6@, 1]
Understand When to Pivot Strategy
If a suitably matched volunteer donor cannot be identified in a worldwide search, recognize that waiting for newly recruited donors is unlikely to help in a useful timeframe. The NMDP adds approximately 30,000 new donors monthly, but the likelihood that a patient with an uncommon HLA phenotype will be represented in new recruits is very low. [1, @2@]
At this point, advocate to reevaluate alternative treatment options, including reducing matching requirements or selecting another graft source such as cord blood. [1, @5@]
Important Considerations Based on Clinical Status
Urgency and Disease Stage Matter
Patients with rapidly progressing diseases should advocate for consideration of readily available cord blood units over waiting for an unrelated adult donor, even if the match is slightly less optimal. [1, @4@]
However, understand the tradeoff: cord blood limits access to subsequent donations for relapse control that would be available from an unrelated adult donor. [@4@, 1]
Patients with early-stage or low-risk diseases have greater mortality effects from HLA mismatching compared to those with advanced disease, so more stringent matching may be justified even if it takes longer. [1, @9@]
Practical Advocacy Actions
Request Specific Search Enhancements
Ask about searches targeting donors from your same racial/ethnic background first, as some HLA alleles and haplotypes are distributed at different frequencies among different racial/ethnic groups, making matches more likely within the same ancestry. [@7@, 1]
Once high-resolution HLA matches are identified, the ancestry of the matched donor does not affect transplant outcome. [@7@, 1]
Access Available Resources
Utilize NMDP's extensive online information at http://www.marrow.org/ and http://bioinformatics.nmdp.org/ to understand your search process. [@6@, 1]
Request that your transplant center use the NMDP's HapLogic algorithm, which uses data on allele and haplotype frequencies to predict the probability of high-resolution matches, especially helpful when many potential donors exist but resources are limited. [@2@, @9@]
Common Pitfalls to Avoid
Don't assume that organizing community donor drives will help in time. With over 18 million people already registered worldwide, patients who cannot find matches in this pool have uncommon HLA phenotypes, and newly recruited donors are statistically unlikely to match. 1
Don't delay transplantation indefinitely searching for a "perfect" match if you have advanced disease, as more HLA mismatching may be acceptable in these cases compared to the risk of disease progression. [1, @4@]
Be aware that many potential donors may be unavailable when contacted months or years after initially volunteering, so having backup options identified is critical. [@6