The Stem Cell Registry Alliance has been launched! It is a collaborative effort among stem cell registries in the United Kingdom, Caribbean, and several African countries – including Kenya, Ghana, Nigeria and South Africa – to address the scarcity of black donors on stem cell registries throughout the world.
Hundreds of thousands of individuals worldwide live with blood cancers, like leukaemia, myeloma, hodgkin lymphoma, and non-hodgkin lymphoma. Every 20 minutes someone in the UK finds out they have a blood cancer. Around 2,000 people in the UK need a bone marrow (stem cell) transplant every year. This is usually their last chance of survival. In the UK, 80% of African/Caribbean individuals battling leukaemia will not find an unrelated matched donor to save their life.
For Caucasian patients, the situation is the complete opposite; Caucasian patients have a 90% chance to find the best possible match from an unrelated donor.
Why such a large disparity?
Access. One of the major impediments to matching patients of African ancestry with compatible donors is the scarcity of black donors who are registered with stem cell donor registries around the world. This gap, in turn, is driven by the steep logistical and financial hurdles involved in creating a registry, which is often enough to prevent resource-constrained countries in Africa and the Caribbean from launching their own registries.
The Stem Cell Registry Alliance (SCRA) was created to reduce the start-up costs for registries in these countries. By pooling resources amongst themselves, member registries will be able to start recruiting donors immediately, without the costs of setting up a stand-alone operation.
Orin Lewis, CEO, and co-founder of ACLT said:
“As one of the leading leukaemia charities in the UK, ACLT are excited to be a founding member of the Stem Cell Registry Alliance. By working in this collaborative way, SCRA will raise awareness to drive change regarding stem cell donation within African/Caribbean communities worldwide. It will allow ACLT to share our expertise gained over the last 21 years alongside SCRA members and feed into our belief that no patient should die, due to a matched donor not being available to them.”
“Nigeria is home to one-quarter of Africa’s population, with almost 400 distinct ethnic groups,” said Professor Ifeoma Okoye and Dr. Sunday Ocheni, co-directors of the Bone Marrow Registry in Nigeria. “The sheer size and diversity of Nigeria’s population make it an ideal location to recruit donors, but we are constantly battling a lack of funds.”
The SCRA will allow member registries to recruit and genetically type donors in their respective countries, then store the data securely on a centralized database, giving patients around the world a better chance of finding a match.
Individuals living in the UK who wish to join the stem cell register can visit www.aclt.org/donate for more information.
SCRA Members include:
Caribbean Bone Marrow Registry (Caribbean)
DWIB (Danny Whyte & Ivor Burford) (UK & Ghana)
Bone Marrow Registry in Nigeria (Nigeria)
The Sunflower Fund (South Africa)
KKLT (Kevin Kararwa Leukaemia Trust) (UK & Kenya)
One of the projects supported by NBTA is run by the BAPS Shri Swaminarayan Mandir. They are working on living organ donation in UK Hindu communities, and have made a video about it.
Making Possible A Gift of Life: Living Organ Donation and Transplantation for Hindu Communities Awareness Day
Saturday 28 October 2017
At The BAPS Swaminarayan
Mandir, Neasden, London,
12pm – 4pm
Aims of the day:
- Learn about living organ donation within Asian and Hindu Communities
- Meet some amazing and brave members of our community
- Hear about how you can help
For more information visit:
Or email us at:
A GIFT OF LIFE http://www.nbta-uk.org.uk/ This project was funded by NHSBT.
BAME nurses and leads who specialise in organ donation have published their first newsletter, Diversity Matters. The newsletter will provide readers with information on what other organ donation teams and committees are doing across the county and offer ideas to assist in community engagement. The group aims to share practice and reflect on the fantastic work which is being done. To get involved, please contact Angela.firstname.lastname@example.org
An innovative conference addressing the challenges facing black communities and organ donation was held at the Cavalry Church of God in Christ (COGIC) in Tottenham.
The conference was organised by the organ donation committee of the Royal Free Hospital and attracted 85 people. They heard about the process of organ donation from a transplant surgeon, a specialist nurse for organ donation and a health psychologist.
Patients were also on hand to tell their stories, a kidney transplant recipient and liver transplant recipient both shared with the audience how organ transplantation had transformed their lives. The sister of a deceased donor also explained how her brother saved lives by donating his organs and described the discussions within her family which led to this remarkable gift of life.
The Mayor of Haringey, Cllr Stephen Mann, attended the conference and thanked everyone for organising this important event.
David Myers, Chair of the Royal Free Hospital organ donation committee and president of the Royal Free Hospital kidney patients association said: “We have to address the enormous gap between the number of black patients who need an organ transplant and the number of black organ donors from the community served by the Royal Free Hospital.”
“The conference highlighted the main challenges we face and how we can address them. I am delighted that we worked in partnership with the COGIC to address this important issue and hope to do so with other communities in the future.”
Janet Brown who attends COGIC said: “We were happy to host this conference. As a church, we see the need for people to be enlightened, educated and informed about organ donation. It was very satisfying to see so many members of our community enjoying the day. We are hoping to do more work in this area in the future.”
Alice Workman, specialist nurse for organ donation at the Royal Free Hospital, said: “It’s vital that all communities know about the importance of organ donation to ensure people can make an informed decision about signing up to the organ donor register. It’s so important that you discuss your wishes with your friends and family.
“Donors can give the gift of life and not only transform the recipient’s life but also touch the lives of so many others. It can also be a great source of comfort for the donor’s family that the deceased has chosen to do this for others.”
Notes to editors
Media contacts: email@example.com
About the Royal Free London NHS Foundation Trust
The Royal Free London’s mission is to provide world class expertise and local care.
We attract patients from across the country and beyond to our specialist services in liver and kidney transplantation, haemophilia, renal, HIV, infectious diseases, plastic surgery, immunology, vascular surgery, cardiology, amyloidosis and scleroderma. We are a member of the academic health science partnership UCL Partners, which brings people and organisations together to transform the health and wellbeing of the population.
The Royal Free London is one of four trusts across the NHS to be chosen to develop a group model enabling us to share services and resources more effectively across hospitals to improve the experience of patients and staff.
Barnet Hospital, Chase Farm Hospital and the Royal Free Hospital are part of the Royal Free London group, and North Middlesex University Hospital NHS Trust became its first clinical partner in September 2017.
For more information about our group structure visit www.royalfree.nhs.uk/the-royal-free-london-group-model and for general information about the trust visit www.royalfree.nhs.uk
Relevant data on organ donation:
9% of those waiting for an organ transplant are from black communities nationally; this means that there were 634 black patients waiting for an organ transplant in March 2017.
There were only 22 deceased black organ donors in the UK in 2016/17
Nearly 20% of those waiting for an organ at the Royal Free Hospital are from black communities.
The five main challenges facing organ donation among black communities in the UK:
Lack of knowledge about organ donation
Less willing to discuss organ donation with family members
Donation deemed as contrary to religious and cultural beliefs
Concern about bodily integrity and intactness related to donation
Less trust in doctors and the healthcare system
Further contacts for information:
Kirit Modi, Hon President of the National BAME Transplant Alliance (NBTA) at firstname.lastname@example.org
Alice Workman, Specialist Nurse for Organ Donation at Alice.Workman@nhsbt.uk
Nii Plange, Acting Chair of the Royal Free Hospital Kidney Patients Association at email@example.com
Patricia Gooden, Acting Vice Chair of the RFHKPA at firstname.lastname@example.org