AABB24: Addressing Challenges in Reaching Diverse Donor Populations

Despite the need for diverse donors of blood, stem cells and organs/tissues, some populations remain underrepresented in donor pools.

The Tuesday morning session titled “Addressing Racial Disparities Across Donation Products for Marginalized Peoples,” reviewed the biological rationale behind a need for a diverse donor pool and the causes underlying the underrepresentation of certain donor populations. Unique barriers facing donors from underserved and marginalized groups (including Black and LGBTQIA+ donors) highlight examples of structural racism and discrimination in donation policy (past and present), which still need to be overcome.

Sylvia Okonofua, executive director of Black Donors Save Lives in Regina, Canada, who attended the session virtually from Canada; and Warren Fingrut, MD, assistant professor at the University of Texas MD Anderson Cancer Center in Houston, developed a transfusion medicine health equity and advocacy curriculum called “Advancing a More Inclusive Blood and Transplant System for Marginalized Groups.” It comprised two e-learning modules: “Addressing Racial Disparities in Blood, Stem Cell and Organ and Tissue Donor Pools” and “Building a More Inclusive Blood and Transplant System for LGBTQIA+ Peoples.”

Ethnic differences in minor blood antigens, particularly with respect to Duffy, require an ethnically diverse donor population to ensure optimal matching, which is particularly important for patients with certain health conditions like sickle cell disease. In stem cell transplantation, racial disparities limit access to fully matched unrelated donor transplants, particularly for Black patients.

Challenges in reaching diverse populations for donation include knowledge gaps, the need for family approval in certain cultural groups and medical mistrust. Historical exclusion and misconceptions about eligibility have further contributed to these barriers.

Structural racism in donation policies is evident in discriminatory screening questions, inequities in donor eligibility practices and laboratory challenges that disproportionately exclude non-white donors. Patient-side issues include referral bias to transplant and inequities in patient evaluation.

Efforts to address these disparities include collaborating with advocates, developing multimedia resources, and engaging with medical associations and community groups.

Okonofua talked about her nonprofit, Black Donors Save Lives, an organization that works to engage Black peoples to donation of blood, stem cells, organs and tissues. Their mission focuses on promoting health action and ensuring all individuals, regardless of racial or ethnic background, have access to life-saving treatment interventions.

The organization emphasizes three key areas: 1) education and awareness, 2) advocacy and community engagement and 3) empowerment of future healthcare professionals. It actively engages communities to advocate for individual representation in donor registries, spread awareness about the importance of donations and encourage participation in the donation process. It has been instrumental in raising awareness and reducing barriers to donation for Black people in Canada.

In recent years, there has also been a growing recognition of the importance of engaging the LGBTQ+ community in donation efforts. One significant development has been the creation of multimedia resources highlighting the importance of LGBTQ+ donors. These resources, developed in collaboration with LGBTQ+ advocates, showcase how members of this community can donate blood, stem cells, organs and tissues to save lives.

One example came from Justin Saint, an LGBTQ+ advocate. Through a video, Justin shared his personal journey from being unable to donate blood due to his sexual orientation to becoming a passionate supporter of the Saving Lives of Pride campaign. This initiative encourages men who have sex with men (MSM) to donate stem cells, emphasizing that they are not only eligible but also wanted, needed and respected as donors. The campaign utilizes innovative approaches, such as creating TikTok videos, to raise awareness about the ease of becoming a donor and the safety of the donation process. It also highlights the critical need for donors from diverse racial groups, as patients are more likely to match with donors from their own ethnic background.

Recent developments have also seen important steps towards reconciliation and inclusivity. The Canadian Blood Service has made an historic apology to the LGBTQ+ community, acknowledging past harms caused by exclusionary donation policies put in place in the wake of Canada’s tainted blood scandal of the 1980s, as well as ongoing structural discrimination. One sticking point had been the HPC donor history questionnaire which, through its placement of the MSM question in between questions about intravenous drug use and receiving money, drugs or other payment for sex stigmatized donations from gay and bisexual men.

The medical community is also addressing the unique challenges faced by transgender and non-binary individuals in the donation process. Transgender donors’ barriers to inclusion include gaps in collection of gender identity information and donor communication. Efforts are being made to improve the collection of gender identity information, enhance donor communication and develop guidelines for the safe and equitable assessment of donors from underserved populations.

Moving forward, the focus is on prioritizing inclusion, recognizing and addressing discrimination, understanding barriers to change and building a culture of support and inclusion in healthcare.

Session participants then broke into small groups to engage in facilitated discussions, with each group focusing on one of the following core themes: highlighting the need to prioritize inclusion, recognizing discrimination, understanding barriers to change, addressing disparities in collaboration with advocates and building a culture to support inclusion. This gave them the chance to discuss not only how each of these themes relate to the practice of transfusion medicine with respect to donor recruitment and in the clinical spheres, but also how to advance a more inclusive donation system for marginalized peoples.