Healing and beyond: From stem cell recipient to transplant strategist
To strengthen the mutual understanding between donor and transplant centers, we regularly invite professionals from BMT Units to educate colleagues working with our donors about requirements on the patient side. This year, we had the honor of welcoming Eric, Director of Strategic Development for Bone Marrow Transplant and Cell Therapy at New York Presbyterian / Weill Cornell to share information about the scientific background in unrelated donor search and selection as well as the transplant journey from a patient perspective. What made Eric’s visit extra special is his deeply personal journey of survival that evolved into a professional mission to help others. We were able to witness the human connection that science alone cannot capture: meeting the donor who gave him a second chance at life!
Eric and his donor Michael met for the first time at the DKMS office in Tuebingen, Germany. Thanks to a stem cell transplant received more than 20 years ago, he was able to study, start his career, and start a family in between. His family, wife and children, as well as his mother did not miss the opportunity to accompany him in this special moment meeting his donor for the first time. “When I met Michael by chance in the hotel lobby, even before the official get together, we recognized each other immediately and felt like we had known each other forever. It was really great that Michael felt the same way I did,” says Eric.
“One of the greatest things in life is that no one has the authority to tell you what you want to be. You’re the one who’ll decide what you want to be.” – Jaime Escalante
Eric´s story – a Journey of Survival
Eric was two years old when his parents and his family Iearned that he was ill with severe aplastic anemia. During his early childhood a stem cell transplantation was cancelled and avoided for several years. Many years later his disease relapsed, and at the age of 16 he finally received a stem cell transplantation at Riley Hospital for Children in Indianapolis, IN. His donation was from an 7/8 mismatched, 45 year old volunteer unrelated donor from DKMS Germany. “Shortly after the transplant, I turned 17, and my life could best be described as a roller coaster ride,” recalls Eric. But the stem cell transplant engrafted successfully, and he recovered fully. Due to that, Eric was able to graduate from high school and college, and then in 2017 received a Master’s degree in Public Health with a focus on biostatistics. Early in his career, by coincidence he found a job opportunity as an Unrelated Donor Search Coordinator and gained 12 years of unrelated donor and cord blood searching experience. Eric has helped identify graft sources for over 200 allogeneic transplant recipients! All of whom were in the same situation as him. Eric is now the Director of Strategic development for the Bone Marrow Transplant and Cell Therapy Program at NewYork-Presbyterian/Weill Cornell. His interest lies in unrelated donor availability, prognosing patient searches immediately at the time of preliminary search, and standardization of cord blood search guidelines for patients with uncommon HLA genotypes that need urgent transplantation. “My donor was a seven out of eight match. And so I know, having been part of search coordination for a long time, that my chances to find a fully matched donor were very limited. Michael, my donor, may feel that it was easy for him to move forward with the donation. But from my perspective, he could have just as easily said no. I think if he had said no, then it's very likely that I would not be here today,” says Eric. Today, he is in his mid-thirty’s and healthy, is married and has two children. His story is one of a kind and he has given us insights in his work, common challenges and his vision to improve selection processes to identify the best donor options.
Transplantation in Focus: Data, Progress, Impact
More than 70% of patients in need of an allogeneic stem cell transplantation lack a fully HLA-identical family donor [1]. Therefore search prognosis is very important. Although there are existing tools, there is a need to further develop a strategy to rapidly and accurately predict likelihood of procuring an 8/8 HLA-A,B,C,DRB1-matched unrelated donor (URD) and a validation tool to determine:
- The number of potential 8/8 URDs, and
- the likelihood of finding a full 8/8 match [1].
The first results of the “8/8 URD Search Prognosis tool v.01” from Eric and his team reported following results: Patients categorized in the very good and good search prognosis group had a very high likelihood for a 8/8 URD identification (100%) and a 8/8 URD transplantation (98%) [1]. The chances in the very poor and futile searches were very low with a 9%-rate for 8/8 URD identification and a 6%-rate for 8/8 URD transplantation. However, search outcomes differed by patient ancestry observed for patients with fair, poor, and very poor searches: 57% of patients with European ancestry received a 8/8 URD transplant (69/122 transplanted patients), whereas only 31% of patients with a non-European ancestry received a 8/8 URD transplant (16/51 transplanted patients) [1]. Based on this findings the newest version v.02 of the 8/8 URD Search Prognosis tool is based on only 3 search categories (good, fair and poor) and on patient ancestry (European or non-European) with concrete prognosis category definitions for each patient ancestry group. The v.02 tool has demonstrated a quite high level of accuracy, minimizes the number of patients categorized into the ambiguous “fair” category, and performs similarly well for both patient ancestry groups [2].
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The biggest challenge, according to Eric from a transplant coordination perspective, is just making sure that everything lines up from a timing perspective. The donor must be cleared right before the patient is ready to start conditioning. The patient must end up being ready from a disease standpoint to move on to transplantation to get to schedule dates. And the donor must be available at a specific collection date. Availability is another important topic: Especially as it was shown that international URDs were much more likely to be available (64%) for confirmatory HLA typing compared to domestic (US) URDs (45%) [3]. On top of that all, the internal communication between the coordinators, transplant physicians, and the nurses as well, is very important to make sure that everyone understands the timing. “Coordination is definitely the most challenging part. Additionally, we're really digging into the different reasons why patients don't go to transplant and hoping to help patients overcome those barriers by working to remove them,” says Eric.
Eric’s goal is to continue the optimization of unrelated donor search strategies with the next version of the “8/8 URD Search Prognosis v3.0” tool. Another goal is to determine situations in which patients may not require multiple unrelated donors (URDs) to be activated for workup and enabling a faster submission of the first URD workup request. In addition, he is interested in improving the use of alternative options for patients who have only a fair or poor prognosis according to the search tool. For example the use of cord blood units. Therefore he wants to promote educational initiatives for transplant centers. “We're also working on developing our own internal processes for when to activate donors for workup, how many donors to activate for workup, depending on the patient's timeframe for transplant and what their search looks like. We're working constantly each day. How do we make the donor's search world a little bit better?” adds Eric. From our perspective, we truly appreciate the remarkable work being done on the donor side. We are grateful that visits like this not only deepen our understanding but also greatly support us in making the best possible choices for our patients.
“Without data, you’re just another person with an opinion.” – W. Edwards Demin
After his talk Eric handed over a special present for his donor Michael: A garden stone with the engraving “Forever grateful for your courage and selflessness” and revealed that he had named his son’s middle name after his donor. “Expectant parents know the problem of finding the right name for their child, but in this case we agreed within 30 minutes - his middle name should be Michael in honor of my unrelated donor. If we can raise our son to have courage and selflessness like my unrelated donor, then we will have succeeded as parents. That´s why we love the name,” says Eric.
Eric’s visit and him meeting his donor was a powerful and very emotional reminder why we do what we do at DKMS.
References
- Davis E. et al. Biol Blood Marrow Transplant 2018 May;24(5):1057-1062. doi: 10.1016/j.bbmt.2017.12.791
- Davis E. et al. Transplant Cell Ther 2023 May;29(5):312.e1-312.e5. doi: 10.1016/j.jtct.2023.02.016
- Fingrut W.B. et al. Blood Adv 2024 Oct 22;8(20):5433-5434. doi: 10.1182/bloodadvances.2024013917