Patients from minority ethnic backgrounds often possess unique tissue types, rendering it significantly more difficult for them to locate a compatible donor within UK registers, especially when compared to individuals of white, northern European backgrounds, as reported by Anthony Nolan. This discrepancy is not just a statistical anomaly; it highlights a pressing challenge within the healthcare system that can have life-or-death implications for those affected.
A stem cell transplant can effectively cure various blood cancers and disorders. During this medical procedure, a patient’s diseased stem cells are replaced with healthy ones from a matched donor, enabling the recipient’s body to produce healthy blood cells once again. This treatment offers hope to many battling life-threatening conditions. (Photo:iStock)
By:
Pramod Thomas
In a significant move to tackle this issue, a UK charity has partnered with India’s largest stem cell registry in a pioneering pilot project aimed at recruiting 10,000 new donors, specifically to enhance stem cell match rates for patients from ethnic minority backgrounds.
Last month, Anthony Nolan publicly announced a collaboration with DATRI in India; this ambitious three-year pilot project seeks to address persistent disparities in stem cell availability, which have long plagued ethnic minority communities.
Asians represent the largest minority ethnic group in the UK, and “our collaboration seeks to address the global shortage of suitable stem cell donors for patients with south Asian heritage,” James Robinson, a prominent figure at Anthony Nolan, emphasized.
This initiative emerges from a crucial need; recent findings indicate that international cooperation between registries combined with Anthony Nolan’s data-driven recruitment strategies can significantly enhance the diversity of stem cell registries, potentially saving countless lives across the world and mitigating long-standing health inequalities.
Blood cancer has become the fifth most prevalent cancer overall and ranks as the third leading cause of cancer-related deaths in the UK, accounting for approximately nine percent of all new cancer cases.
Raj Parmar, a patient from Leicester, faced a daunting challenge when he was diagnosed with myelofibrosis, a rare form of blood cancer, at just 22 years old in 2015. This condition hinders the bone marrow’s ability to produce healthy blood cells. He was informed that a stem cell transplant was essential, but the timeline remained uncertain. “It could be within three months or even up to 10 years,” Parmar recounted while speaking to Eastern Eye.
Ultimately, he endured a grueling wait of five years as his health continued to decline, and by 2020, he found himself in dire need of a transplant. However, the search for a compatible donor proved to be a formidable hurdle.
“Because of my Indian heritage, my medical team informed me that I had a lowered chance of finding a good match,” Parmar stated, revealing a common plight among patients from similar backgrounds.
Despite attempts, his brother was not a match, prompting doctors to explore international donor registries, where they ultimately discovered a perfect match in Germany, illustrating the importance of global cooperation in healthcare.
Now, four years following his transplant, Parmar is thriving and feels immense gratitude for the second chance at life he has received.
Yasmin Sheikh, who spearheads policy and public affairs at Anthony Nolan, underscored that locating matching donors remains a critical challenge in stem cell transplantation, particularly impacting ethnic minority patients adversely.
“Our teams work tirelessly to ensure that more patients have access to suitable matches on the stem cell register. This innovative collaboration with DATRI will broaden the global pool of adult stem-cell donors, specifically aiming to alleviate health disparities affecting British Asian patients,” Sheikh remarked on the promising initiative.
She further noted, “We understand that recruitment alone won’t resolve the issue of equitable access to transplants. Our researchers are actively investigating alternative treatments and striving to comprehend the underlying causes of patient inequalities.”
Both Sheikh and Robinson stressed the significance of the partnership with DATRI, emphasizing its goal to enhance the likelihood of finding suitable stem cell donors for patients of south Asian descent.
“The stem cell community has consistently thrived on international collaborations to maximize the number of available matches. We recognize that sometimes finding a local donor can prove challenging, hence our focus on international options,” Robinson articulated.
While Anthony Nolan’s UK registry does proportionally represent ethnic minorities, it notably lacks sufficient genetic diversity to meet all demographic needs.
Robinson explained, “The genes involved in transplantation display significant variability, leading to complications for certain UK demographics in finding matches.”
Sheikh elaborated, “The representation of minority ethnic donors on our registry aligns with population levels; however, the extensive HLA (human leukocyte antigen) diversity among those from minority backgrounds motivates our need for international collaboration.”
Robinson clarified that the partnership with DATRI is not an indication of insufficient engagement from the UK’s south Asian community, but rather an initiative aimed at enhancing match rates across borders globally.
He expressed enthusiasm for the pilot project’s outcomes, noting its ambitious goal of recruiting 10,000 Indian donors over three years; as of now, 3,000 donors have already been registered in the project’s first year.
This collaboration with DATRI marks Anthony Nolan’s inaugural targeted international initiative; should it prove successful, there are potential expansions into partnerships with registries in Pakistan and Bangladesh. “By amplifying the diversity of donors across both registries, we’re aiding not only UK patients but also those in India,” Robinson added, highlighting the broader implications of the project.
He concluded, “The greater the diversity of demographics among donors, the higher the chances of securing a match.”
This strategic approach could ultimately shorten the wait times experienced by patients in need of matches. Sheikh pointed out that the process of identifying a suitable stem cell match is notably complex and varies from case to case.
Once a patient search request is received, the UK registry is committed to providing a response within a 48-hour window, while international registry searches generally yield results within 72 hours. However, this rapid response phase does not guarantee an exact match; the selected donor must undergo additional testing, and logistical factors like donor location can influence timing further.
In cases deemed critical, such as those involving aggressive cancers, expedited matching takes precedence to ensure timely interventions.
Robinson mentioned that local matches are processed swiftly, yet international registry searches, which encompass nearly 40 million donors, may require slightly extended timelines.
Creating awareness about stem cell donation remains imperative, particularly in India. “We chose to collaborate with DATRI due to their established reputation and outreach capabilities, but wider awareness initiatives are equally essential,” he asserted, emphasizing the need for community involvement.
How does Anthony Nolan plan to educate communities about the importance of diversity in donor registries?
**Interview with Yasmin Sheikh, Policy and Public Affairs Lead at Anthony Nolan**
**Interviewer:** Thank you for joining us, Yasmin. Let’s dive right into the recent initiatives by Anthony Nolan. Can you explain the significance of your collaboration with DATRI in India?
**Yasmin Sheikh:** Thank you for having me. Our partnership with DATRI is groundbreaking. We aim to recruit 10,000 new donors specifically from the South Asian community to address the significant disparity in stem cell matches for ethnic minority patients. This is crucial because patients from these backgrounds often face challenges in finding compatible donors within existing UK registries.
**Interviewer:** Why is there such a disparity in finding compatible donors among patients of minority ethnic backgrounds compared to those of northern European descent?
**Yasmin Sheikh:** The primary reason lies in genetic variability. Ethnic minority groups, particularly individuals of South Asian heritage, have unique tissue types that are less represented in existing donor registries. This lack of representation results in a substantially lower chance of finding suitable matches. The genes involved in transplantation show significant variability, making it a challenge for these demographics.
**Interviewer:** Can you share how this collaboration might improve outcomes for patients like Raj Parmar, who has been open about his struggles finding a donor?
**Yasmin Sheikh:** Absolutely. By broadening the pool of potential donors internationally, we significantly enhance the likelihood of finding suitable matches for patients like Raj. His story is a testament to the importance of global cooperation—he ultimately found a match in Germany, illustrating that we cannot rely solely on local registries. This initiative not only provides hope for patients but also works towards alleviating long-standing health inequalities.
**Interviewer:** How does Anthony Nolan plan to ensure equitable access to transplants, beyond just donor recruitment?
**Yasmin Sheikh:** While recruiting donors is vital, we recognize it’s a piece of a larger puzzle. Our teams are actively researching alternative treatments and studying the factors contributing to patient inequalities. We aim for holistic solutions that ensure all patients, regardless of their background, have equitable access to life-saving treatments.
**Interviewer:** Considering the ambitious goal of registering 10,000 Indian donors, how is the project progressing so far?
**Yasmin Sheikh:** We’ve made significant strides in the first year, with 3,000 donors already registered. Our teams are committed to outreach and education within the Indian community, emphasizing the pressing need for more donors. We’re optimistic about reaching our goal over the three-year timeline.
**Interviewer:** Lastly, what message would you like to convey to those who may consider becoming donors?
**Yasmin Sheikh:** I encourage anyone eligible, particularly from minority ethnic communities, to consider donating stem cells. You could be the match that saves someone’s life. Every registration adds to the hope for patients who are waiting for a second chance. Together, we can bridge the gap in donor diversity and make a meaningful impact.
**Interviewer:** Thank you, Yasmin, for sharing these insights and for the important work Anthony Nolan is doing.
**Yasmin Sheikh:** Thank you for having me. It’s vital to raise awareness about these challenges and the steps we can take to overcome them.
