Clear, inclusive messaging crucial to recruit LGBTQ+ stem cell donors
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Although gay, bisexual and other men who have sex with men can serve as volunteer unrelated stem cell donors for people in need of transplants, they have long faced exclusion from donation and represent a largely untapped donor pool.
“Knowledge of this eligibility is low, not just within the LGBTQ+ community but also in the general population and even among health care providers,” Warren Fingrut, MD, a Canadian hematologist and transplant physician, MPH student at Harvard T.H. Chan School of Public Health and research fellow studying cancer care disparities at Memorial Sloan Kettering Cancer Center, as well as founder and director of Stem Cell Club, told Healio.
To help promote a more inclusive transplant system, Fingrut and colleagues conducted a study evaluating barriers and facilitators to stem cell donation for members of the LGBTQ+ community.
Fingrut, senior author of the study whose results were presented at the 2023 Tandem Meetings | Transplantation & Cellular Therapy Meetings of ASTCT and CIBMTR, spoke with Healio about the barriers impacting gay, bisexual and other men who have sex with men (gbMSM) and discussed strategies for further improving inclusive messaging and recruitment strategies.
Healio: What prompted you to conduct this study?
Fingrut: I’m a transplant hematologist who cares for patients who are candidates for and recipients of allogeneic hematopoietic stem cell transplantation. I also serve as director of a donor recruitment organization called Stem Cell Club, which I founded in 2011. For patients to receive allogeneic HSCT, a suitable donor is needed. Most patients lack a fully matched donor in their family and need an alternative donor to save their lives, most commonly a matched unrelated donor, if available.
The key here is “available,” because there’s marked racial disparity in access to matched unrelated donors, with patients of European descent much more likely to have an available donor than patients of non-European ancestry. Stem Cell Club has recruited over 22,000 potential donors across Canada (more than 55% non-European), at drives where recruiters guide those interested in signing up to the registry to swab their cheek for a tissue sample, to see if they are a match to a patient in need.
At our drives over the years, my teams have interacted with many gbMSM individuals who were surprised to learn of their eligibility to donate stem cells. Many from these communities also shared concerns related to feeling unwanted or unwelcome as donors, given the stigma surrounding donation from gbMSM.
In 2018 and 2019, Stem Cell Club piloted a campaign to recruit LGBTQ+ donors at Pride festivals across Canada. We signed up hundreds of LGBTQ+ individuals and allies, and we connected with advocates in the LGBTQ+ community.
In 2021, we launched the Saving Lives with Pride campaign to advance efforts to include gbMSM as donors. We wanted to evaluate the campaign from the perspective of gbMSM to guide us as we iteratively improve the campaign over time, but also to generate considerations to inform other health care organizations to develop inclusive recruitment campaigns in partnership with members of these communities.
Additionally, there has been an evolution over the past 5 years in blood donor eligibility criteria for gbMSM. The FDA recently proposed to change the time-based deferral for blood donation for gbMSM. Right now, it’s a 3-month deferral. The FDA proposes to replace that process with one where people who have anal sex with new or multiple sexual partners within a 3-month period are deferred from donation — similar to eligibility criteria that have been implemented in both Canada and the U.K. This change shifts the questions from, “Who are you having sex with?” to “What kinds of sex are you having?” That’s a step toward inclusion and enables many more gbMSM to donate blood. Given these policy changes, there will be increasing opportunities to engage gbMSM to donation, and an understanding of gbMSM barriers and facilitators to donation is critical.
Healio: How did you conduct the study?
Fingrut: We conducted 12 focus groups with 37 gbMSM after viewing multimedia resources from the Saving Lives with Pride campaign. These resources included infographics highlighting gbMSM eligibility as donors and explaining, sensitively and without stigma, that people living well with HIV are deferred from donation, and TikToks and short videos featuring physicians, gbMSM advocates and/or LGBTQ+ people personally impacted by donation. We analyzed feedback from these focus groups to better understand barriers and facilitators for gbMSM donation, as well as key considerations for running gbMSM recruitment campaigns.
Healio: What did you find?
Fingrut: In addition to the lack of knowledge regarding gbMSM eligibility to donate, exacerbated by confusion between blood vs. stem cell donation eligibility criteria, participants experienced other barriers to donation. There was also mistrust of the health care system based on prior negative experiences and worries that members of these communities would not be treated well as donors if they disclosed who they were to the health care team.
As part of the Saving Lives with Pride campaign, we had developed a series of videos in collaboration with prominent Canadian transplant hematologists, including Arjun D. Law, MD, and David Allan, MD. They both made video statements in support of stem cell donation by members of the LGBTQ+ community, including gbMSM. These videos not only recognize that members of these communities are eligible to be donors, but that they are wanted and needed as donors, and will be treated with respect — as the heroes they are for donating. The videos also thank the many members of LGBTQ+ communities who have already gone on to donate and save the lives of patients in need. The videos were very well received; however, some participants noted that although it is uplifting to hear messages from physicians about inclusion, these messages only ensure that those individual physicians will be inclusive. What about the rest of the team? Our analysis highlighted the need for entire health care teams to reflect that inclusion.
Participants were also inspired, empowered and encouraged to donate through viewing multimedia resources featuring diverse representations of gbMSM — across the intersectionality of gender expression and sexual orientation with ancestry, culture, language spoken, and disability — advocating for and being impacted by stem cell donation. Participants also provided a great deal of helpful advice on how to run campaigns engaging gbMSM to donate.
Healio: What do you expect will be the implications of this study?
Fingrut: We summarized outcomes from our 2019 Pride pilot campaign in a paper published in Bone Marrow Transplantation, and the paper was highlighted as one of the journal’s best of 2022. This was a reader’s choice accolade, and an example of the recognition of the increasing value and prioritization of inclusion in our field.
I hope the findings will be helpful and support recruitment organizations, donor registries and transplant centers to advance a more inclusive transplant system. However, more work is needed to understand and overcome barriers to donation impacting transgender and gender nonbinary people. I also want to see work that advances inclusion for LGBTQ+ patients. I think this is the next frontier in inclusion, and I hope to see more such work in this space.
For more information:
Warren Fingrut, MD, can be reached at Memorial Sloan Kettering Cancer Center, 1275 York Ave., New York, NY 10065; email: wfingrut@stemcellclub.ca.
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Schneidman J, et al. Abstract 66. Presented at: Tandem Meetings | Transplantation & Cellular Therapy Meetings of ASTCT and CIBMTR; Feb. 15-19, 2023; Orlando.
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