By Rachel Luna & Victoria Malaney
At the ACPA15 convention in Tampa, the Multiracial Network (MRN) is engaging in advocacy by inviting people to register with Be the Match for the National Bone Marrow Donor Registry, as this is a major health issue for people afflicted with certain life-threatening diseases and who come from diverse backgrounds. At the same time, we recognize that this organization is required to adhere to current FDA regulations that are discriminatory toward “men who have had sex with another man” and those who identify as trans*.
Why this important for mixed folks and folks of diverse backgrounds?
Every year, over 30,000 people are diagnosed in the US with life threatening blood diseases like leukemia. For many patients, a bone marrow transplant is their only chance at survival. Only 30% of patients find matching donors within their families. The remaining 70% must search for an unrelated donor. On US’s national Be The Match Registry, a total of 30% of donors are minorities and 3% of potential donors self-identify as mixed race. Though this approximately matches U.S. Census data, more mixed-race donors are needed given the sheer genetic diversity of the group (Statistics from MixedMarrow.org).
What is particularly challenging for mixed-race individuals is that theNational Marrow Donor Program (NMDP) is unable to provide a patient and their family the likelihood of finding a match for patients of mixed heritage. However, the greatest challenge for finding a match is that the growing community of racially and ethnically diverse people have tissue types that are very complex making it harder to match. The chance that two people from two different groups will create a new tissue type in children is very high. This is why there is such a great need for donors from all backgrounds to join the Be The Match Registry – to increase the likelihood that all patients will find a match (Statistics from MixedMarrow.org).
Acknowledging discriminatory policies
We are working to hold the dissonance between advocating for a need in our populations and working within a discriminatory institutional system and medical complex. We plan to confront the incongruence of social justice values in these ways:
- Be transparent about the FDA regulations, the organization’s response, and MRN’s opposition to the discriminatory policies;
- Write an open letter from MRN to the FDA advocating for policy change; and,
- Share sample letters and resources with other professionals wishing to contact the FDA.
Additionally, we seek to find ways to partner to create space for dialogue on this issue with our larger ACPA community. We are open to continuing the conversation during and after convention to address the complexity of intersections of race, sexuality, and gender, and challenging systems that are inherently oppressive.
Take action and more info
- Find MRN at our ACPA15 events in Tampa, FL to get more information and sign up for the registry
- Follow us at @ACPA_MRN
- More info at Be The Match and Mixed Marrow regarding the process of donation and statistics
- Support Mixed Match a documentary in progress by filmmaker, Jeff Chiba Sterns