Here and Now 365 supports organ, blood and stem cell donation as a gift of life
The National BAME (Black, Asian, Minority Ethnic) Association held a formal launch on Wednesday the 4th of July to mark its official launch in the UK. The NBTA is poised to become the coordinating body of the many networks, organizations, trusts and charities involved in helping members of the BAME community finding a suitable donor or enlisting to become donors themselves. The sponsor of this initiative is Anne Milton MP, Minister of State for Public Health.
It is a very important step towards the goal of saving and improving many lives, as the stated mission of the NBTA is to “bring together people, passion and resources, to address the barriers faced by those from a BAME genetic heritage needing a whole organ or stem cell transplant.” The goal is to save lives, by promoting awareness of the importance of transplantation and the inequalities currently affecting the BAME community’s situation in this sector of public health. The launch of this initiative was accompanied by an ambitious three-year strategic plan to achieve a desired set of outcomes, of which the most prominent are:
- Radically changing the attitude towards donation and transplantation currently prevalent in the BAME communities.
- 15% increase in sign-ups to the Organ Donor Register
- 10% increase in the number of living organ donors, as well as donors after death
- Improved awareness of stem cell donation in order to increase the matching pool for those suffering from blood cancers
- Bringing stem cell donation to a percentage reflecting the UK BAME demographic proportion
The first year’s strategy is to consolidate the membership of the NBTA in order to accurately reflect the societal sectors represented by the organization. That means establishing NBTA as a pertinent, national-level authority on the public health issues it operates with, developing efficient communications programmes to support local awareness campaigning, creating an online platform for the cause, as well as a significant internet presence, and maybe most importantly lobby the NHC Commissioning board on behalf of the BAME population.
Alesha Dixon said: “I am honoured that I have been asked to be a Donor Ambassador. Black and Asian people are dying because there are not enough people from our communities coming forward as bone marrow/stem cell or organ donors. We can change this”
Actor David Harewood said: “As a bone marrow/stem cell donor, I know how important it is to for people from Black and other Ethnic Minority backgrounds to come forward and sign up to donate their blood, organs and stem cells. By becoming a donor, you have the potential not only to save someone’s life, but to change the lives of their friends and family too”
Pictured above: Anne Milton MP (top left), Alesha Dixon (top right), David Harewood (right), Beverly Knight (centre) and Colin Salmon (left).
Facts and figures:
- 180 people from these ethnic groups die every year on the waiting list for a transplant
- 80% of BAME families do not give consent for organs to be used for transplant – compared to a national average of 25%
- There is a 40 per cent match rate for bone marrow and bone marrow cord blood donations, compared to 90 per cent in other patients
- Members of BAME communities are three times more likely to need an organ transplant than the rest of the population – however, just under 2% are signed-up on the NHS Organ Donor Register
- A transplant has a greater chance of being successful if the donor and recipient share the same ethnic origin
- Of the more than 18 million people who have signed the NHS Organ Donor Register, less than 2% are Black or Asian
Transplant patient Harminder Dhaliwal thought her days on dialysis were over after she received a new kidney 16 years ago, but the 43-year-old community nurse is now back on the waiting list after her new organ began to fail in 2008 due to a disorder. Mum-of-two Harminder is now hoping for a new organ match but knows that it may be more difficult second time around:
“I have now been back on dialysis for more than two years and also back on the waiting list for a new kidney. It’s a little bit harder the second time to get one that matches because of the increased antibodies in the system.
“Now the struggle I have is for my kids having to cope with having a mum who isn’t able to give them the motherly care they need. I find it difficult and feel they miss out.”
Claire received a liver transplant in August 2011, after being diagnosed with Primary Biliary Cirrhosis in 2008: “I was on the waiting list for a new liver for a year, during which time my condition quickly deteriorated. My energy levels were very low and I was in increasing pain and discomfort, to the point where even everyday tasks like looking after my daughter became incredibly difficult or unmanageable.”
“I’d been on the organ donor register since I was sixteen but I never thought that one day I might need an organ myself. It’s an amazing life-saving gift not only for the patient, but for their family as well. The anonymous donor who gave me a liver gave my daughter back her mummy.”
Wendell Raphael, or Raph of Minus 1 Kidney.com as he is known online, has donated a kidney to one of his co-workers in 2007, and ever since then he has been campaigning to encourage more people to become donors.
He ran the London marathon, jumped out of an airplane (in tandem) and became an Olympic torchbearer – all in the name of organ donation. “Get more from life by sharing the gift of life.” Is his motto.
Ivor Burford thought he had the flu ten years ago when he was feeling unwell on his way to work, but some careful medical examinations revealed it was actually leukaemia of the acute myeloid type, to be exact. Followed shortly by kidney failure, the man’s chances of survival looked slim at best.
Aggressive chemotherapy got him back on track for a while, but the disease relapsed, forcing his family and friends to start looking worldwide for a bone marrow match. They found one in America and now Ivor is on his way to full recovery, thanks to The African Caribbean Leukaemia Trust.
Kas and her husband Rik Basra are founders and managers of the Rik Basra Leukaemia campaign aimed at increasing the number of Asian stem cell donors, by registering them on the Anthony Nolan Charity database.
A Leicester police inspector and family man, Rik got myeloid leukaemia 3 years ago and started treatment by chemotherapy. As the disease persisted, Rik’s only chance of survival remained a stem cell transplant. Confronted with the slim chance of finding a donor through the undersubscribed register of potential stem cell donors, him and his wife upped their efforts and found a match in Germany.
After the operation, the Rik Basra Leukaemia Campaign kicked off, with the purpose to mobilise the UK South Asian community into registering as donors in as many numbers as possible, to increase the chances of patients suffering from blood cancers.
Local and regional media have extensively covered the Basra family saga, helping their campaign gain notoriety and establish a public profile. Already seeing important progress, Rick Basra and Anthony Nolan will continue to organise donor registration events and online programmes to bring more people onto the database.
Find out more at www.rikbasra.com
A full list of the group members is below:
- African Caribbean Leukaemia Trust (ACLT)
- Afiya Trust
- Anthony Nolan
- DWIB Leukaemia Trust
- Hindu Forum of Britain
- Institute for Health Research
- Kidney Research UK
- Muslim Student Healthcare Network
- NHS Blood and Transplant
- National Kidney Federation
- Race Equality Foundation
- Rik Basra Leukaemia Campaign
- Seventh Day Adventist Church
- South Asian Health Foundation
Here and Now 365, as an agency primarily targeting the BAME population, will get involved in these efforts, together with the Seventh Day Adventist Church, Kidney Research UK and others – by God’s Grace and our media communication expertise to make a difference in the context of NBTA operations.