NBTA Co-Chairs, Kirit Mistry and Orin Lewis, met this week with Parliamentary Under Secretary Department of health MP Jackie Doyle -Price. They discussed the issue of how to raise awareness of organ donation in BAME communities.
NBTA welcomes the announcement of an ‘opt-out’ consultation by the Government.
The focus of the consultation will be on three questions:
- How much say should families have in their deceased relative’s decision to donate their organs?
- When would exemptions to ‘opt-out’ be needed, and what safeguards will be necessary?
- How might a new system affect certain groups depending on age, disability, race or faith?
Orin Lewis, Chief Executive of Afro-Caribbean Leukaemia Trust & Co-Chair of National BAME Transplant Alliance said:
“As a parent of a young man who sadly passed away from Multiple Organ Failure, I gladly welcome the Prime Minister’s decision to instigate a much needed public Consultation on the relative positive and negative merits of England having an Opt Out Donation policy. Looking forward I am expecting a wide spectrum of heated but ultimately constructive views and opinions from key stakeholders across the public domain, with the end goal of ultimately saving many more lives across the wide diversity of patients in England needing an organ transplant.”
The consultation will run until the 6th March 2018.
NBTA members ACLT have launched a campaign called Our Silent Crisis, highlighting the need for organ donations from living people.
In 2016 the waiting list for kidney transplants was made up of 34% Black, Asian or Minority Ethnic (BAME) people. But of all the transplants that took place only 28% were to BAME recipients. The shows the difference between the supply of kidneys and the demand for them.
Across the UK around 5000 people are in need of a kidney and more than 250 people died while waiting during 2016-2017.
The average waiting time for a Black patient needing a kidney is three years. Not only is the number of Black people affected by kidney failure disproportionately high, but the number of Black donors is critically low as well.
Unless ordinary people come forward to become living kidney donors this number will rise, and the number of deaths will too.
- Blood and tissue types are more likely to match in people with the same ethnic background. Matching makes organ transplants possible
- Only 17 people from the Black community donated a kidney in 2016-2017, the lowest figure in 5 years
- Just 189 Black patients received a kidney transplant at the end of 2016-2017, meaning 600 patients are still waiting
Orin Lewis OBE, Co-Founder, Chief Executive of ACLT, said:
“This is a real issue facing our community. Our silent crisis needs to not be silent anymore: More donors of African Caribbean descent need to come forward and help us save lives. Too many people needlessly die waiting while friends, family and colleagues could provide a vital match. We need a game changer soon, if the current trend continues the future looks bleak for our community.”
Nina said ’You don’t need to be brave to be a donor. There’s nothing scary about it. My thing is that could be me. It could be anyone of my nephews, god-children or a family member. I wouldn’t be able to cope knowing that I needed this thing to live and none of you are going to help me.’
Nina’s incredible story can be viewed on YouTube. Please CLICK HERE
To read more about the ACLT living kidney campaign please CLICK HERE
The All Party Parliamentary Kidney Group held a Summit on living donation on 22 November 2017. The purpose of the Summit was to identify the reasons for the drop in the number of living kidney transplants in the UK, three years in a row; and to consider how we can reverse this trend. Key speakers from the Department of Health ( England), NHS England, NHSBT, the Transplant 2020 Oversight Group, a consultant nephrologist and the NKF shared their views on the current situation. The APPKG agreed to publish a Manifesto on living donation in January 2018 and this will set out recommendations for increasing living kidney transplants. A copy of the agenda for the Summit and a Briefing Paper on living donation are attached.
Orin Lewis, NBTA Co-chair, said:
“The Living Donor Transplant Summit was a very successful and informative event. The keynote speakers highlighted the present day landscape of Living Kidney donation with focus also on the historical and future relationship with deceased organ donation including the rise and relative fall in the registration numbers of living donors. The NBTA welcomes the work of the National Kidney Federation in bringing together many of the key stakeholders to review and instigate new policy recommendations which will assist the large diversity of patients in need of the gift of life.”
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)