The Importance and Challenges of Diversifying the National Donor Marrow Program Registry

A bone marrow transplant is an effective treatment for many blood cancers and sometimes the only attainable cure. However, for BIPOC (Black, Indigenous, and people of color), finding a suitable transplant donor is often not possible. As a community healthcare worker, you’re in a prime position to help solve this issue.

You have likely noticed the low rate of BIPOC donor matches in your community. Currently, the chances of finding a donor are only 60% for Native Americans and Alaska Native, 48% for Hispanics or Latinos, 47% for Asian and Pacific Islanders, and 29% for African Americans.(1) This means that many BIPOC patients will not receive a transplant simply because a suitable donor cannot be identified. 

In contrast, 79% of white patients find a matching donor.(1) This difference in matching rates is related to the ethnicity of available donors. Essentially, for any one ethnicity, the chances of finding a match improve when there are increased donors available for that ethnicity.

A good bone marrow match for a patient will most likely be a donor of similar ethnicity and genetic heritage. Although relatives are usually the first to be considered for donation, recipients only match with their family members in less than a third of cases.(2) This means that 70% of transplant patients are faced with no other option but to search for an unrelated donor in a national registry.(2) 

The need for a donor of similar genetic heritage results from people of the same ethnicity tending to have the same set of proteins on the surface of their cells. These proteins are called human leukocyte antigen (HLA) markers. Your body uses these markers to recognize its own cells, so they are not flagged for destruction by your immune system.(3) HLA types are inherited, and commonly shared between people of the same ethnic background.(3) Additionally, some ethnic groups have more complex HLA types than others, making it even more important to match a patient with someone of the same ethnic background.

Finding bone marrow matches will be difficult if your community's ethnic makeup is not reflected in the donor pool. The National Donor Marrow Program (NDMP) connects donors with unrelated patients who need a transplant. Despite NDMP being the world’s largest and most diverse marrow registry, BIPOC patients often fail to find a compatible donor due to relatively fewer donor registrants matching their ethnicity.

There are several reasons for this disparity in representation.

Firstly, factors affecting a BIPOC’s decision to join the NDMP registry are often personal. In addition to a general lack of awareness about the existence of the registry and its importance, BIPOC are less likely to join for the following reasons(4):

·        Religious objections to donation

·        Distrust that donations will be allocated equitably, or in the medical system in general

·        Feeling discouraged from donating by community members

·        Fear of physical pain incurred during the donation process

·        Ambivalence about the value of donating

If BIPOC patients are to have a better chance of finding a suitable transplant, the representation of non-related BIPOC donors in the NDMP registry needs to increase. This sentiment is supported by the NDMP, which recommends that the registry reflect the diversity of your patients.(5) To increase the likelihood of donor matches in your community, you can enact strategies to attract as many donors as possible from your patient population and wider community.

To recruit more donors, you could develop educational practices to change beliefs, address myths, and educate your patients and the broader community. Target the most important facets of the donation process: donor testing and actual donation. When communicating with potential donors, have an interpreter on hand and/or educational materials accessible to non-English speaking participants.

In addition to making your outreach more accessible, partnering with trusted individuals in your communities, schools, and churches is a great way to broaden awareness and educate others.(6) Set up information sessions and donor drives at these sites to help you spread the knowledge that joining the registry could save the life of someone with a similar ethnic background.(5) Include testimonials from a donor and a transplant recipient to help allay fears and show the value of registering.

At recruitment events, try to identify and respond to potential donors who express hesitation.(4) Address their concerns with understanding and without judgment. The Myths and facts about blood stem cell donation page on NDMP’s website can help you dispel common misconceptions about donating. If needed, allow hesitant individuals time to reconsider their positioning on the matter. Offer them the option of testing now and then contacting the NDMP in the future if they wish to activate their registration. The goal is to resolve ambivalence and ensure that donors are making an informed decision(4). 

Another way to create awareness about the lack of diversity in the bone marrow registry is by communicating through social media platforms and BIPOC-run radio and television stations.(5) These outlets provide a way to announce recruitment opportunities and spread the word about the urgency and significance of this issue while keeping things accessible.

Lastly, you could organize a community-wide donor event through the NDMP’s Be the Match organization. For more information about hosting a donor event see Help Grow the Registry on the NDMP’s website.

Community healthcare workers like yourself have the capacity and influence to help diversify the NDMP registry. Enact these strategies to engage and encourage your BIPOC patients and those in your ethnic communities to be tested and added to the NDMP registry. It could save lives.

References

1.      How does a patient’s ethnic background affect matching? Be the Match. February 2021. Accessed January 9, 2024. https://bethematch.org/transplant-basics/how-blood-stem-cell-transplants-work/how-does-a-patients-ethnic-background-affect-matching/

2.      Majhail NS, Nayyar S, Santibañez ME, Murphy EA, Denzen EM. Racial disparities in hematopoietic cell transplantation in the United States. Bone Marrow Transplant. 2012 Nov;47(11):1385-90. doi: 10.1038/bmt.2011.214.

3.      ASCO staff. Why the Bone Marrow Registry Needs More Diverse Donors and How to Sign Up. March 30, 2021. Accessed January 9, 2024.

https://www.cancer.net/blog/2021-03/why-bone-marrow-registry-needs-more-diverse-donors-and-how-sign

4.      Switzer GE, Bruce JG, Myaskovsky L, DiMartini A, Shellmer D, Confer DL, Abress LK, King RJ, Harnaha AG, Ohngemach S, Dew MA. Race and ethnicity in decisions about unrelated hematopoietic stem cell donation. Blood. 2013 Feb 21;121(8):1469-76. doi: 10.1182/blood-2012-06-437343.

5.      Be The Match Registry Recruitment and Availability. Be the Match. Accessed January 18, 2024.

https://network.bethematchclinical.org/transplant-centers/access-to-transplant/be-the-match-registry-recruitment-and-availability/

6.      The Bone Marrow Registry and Why Diversity Matters. There Goes my Hero. February 25, 2016. Accessed January 9, 2024. https://theregoesmyhero.org/the-bone-marrow-registry-and-why-diversity-matters/