By Gaggan Sabherwal
BBC South Asia Diaspora Reporter
29th October 2020
50-year-old Balbinder Sandhu from Leeds in West Yorkshire in England has been waiting for a kidney transplant for the past two and a half years. Having lived with diabetes for over half of his life, Bally as he is fondly called was diagnosed with chronic kidney failure ten years ago. And due to this his kidney function has decreased over time and Bally desperately needs a new kidney.
‘’I was diagnosed with diabetes 25-26 years ago’’, he says. ‘’I run few businesses. So, I had to do a medical check and it showed that my urine from a protein was leaking out of my kidneys. The doctor told me that I have only 6 months left to live as my kidney’s condition was really bad and this left me really worried as I was thinking what would happen to my family after my death. Then we went and saw a kidney specialist, they said that my kidney condition is bad but they can slow down my kidney failure condition and that I don’t only have 6 months to live’’.
‘’And so, over the period of 10 years since they told me about my chronic kidney failure, I have gone down virtually to 2 percent of my kidney now. That’s combining both the two kidneys’’.
Bally is currently on the dialysis machine for ten hours every night and all this is having a toll on his day to day life.
‘’’The fluid that goes into my body from the dialysis machine makes it difficult for me to sleep at night and so I tend to sleep for an hour or two in the morning. I also get out of breath very quickly and I get very tired and I kind of get very easily confused. All I do is just sit around all day long’’, Bally says.
The father of two is currently one of around 1,800 people from black, Asian and minority ethnic (BAME) backgrounds in the UK waiting to be matched with an organ donor. But getting a kidney hasn’t been easy due to the shortage of organ donors from South Asian backgrounds.
According to a recent report by the NHS Blood and Transplant in 2019, 32% of the people on the organ transplant waiting list were from the Black, Asian & other ethnic minority (BAME) groups and only 7% of the deceased organ donors were from these communities. And it is due to this stark imbalance between the number of BAME people on the waiting list to the number of BAME donors that patients from ethnic minority backgrounds on an average have to wait a year longer than white patients to get an organ.
‘’Organs are best matched ethnicity to ethnicity. So that would mean that if an Asian person donates their kidney it would better match an Asian recipient. If there’s a shortage of people giving an organ that basically means that people waiting are going to wait just longer. So, people from BAME background wait at least three times longer for an organ’’, says Harpreet Matharu, a specialist nurse working for the NHS Blood and Transplant team.
It is a known fact that a high proportion of BAME people go on to develop high blood pressure, diabetes and certain forms of hepatitis, making them more likely to need a transplant at some point in their lives. Figures from the National Institute of Health and Care Excellence (NICE) show that around 15.2% of people from South Asian and black ethnic backgrounds suffer from type 2 diabetes compared to 8 % of those from white, mixed or other ethnic groups.
But despite this not many Black and Asians donate their organs leading to an acute shortage of organ donors from the BAME communities and according to Harpreet there are a number of reasons as to why BAME people don’t donate their organs –
‘’They are worried about their community, what their community is going to say, and they are worried about their reputation because as we know in our community organ donation is a taboo in our society. They are worried about religion that maybe you know somewhere in their religious texts it's forbidden. We have talked to religious leaders and there's nowhere in any text that says on donations forbidden and most religions support organ donation’’.
Harpreet further adds, ‘’Some of them are simply are scared because of what happens back home, they are worried about their loved one, not being given the maximum treatment, just because we want their organs and that is definitely not the case in the United Kingdom The doctors will try their utmost best to save someone’s life and only then organ donation will be considered’’.
Besides this, the recent corona virus outbreak and lockdown too has added to Bally and his family’s existing woes. Bally’s wife Kiran Sandhu says, ‘’Pandemic started sort of in early March and in April all the transplant lists got suspended and it was quite an anxious time for us especially for Bally, not knowing actually what’s going on’’.
‘’It’s been two months since the transplant list is back on. Bally used to move around a bit and work and keep himself busy but due to the lockdown and corona virus it seems that his energy levels have dropped even further due to him just sitting at home’’.
A new organ donation act was launched in England on 20th May 2020 and with this new law coming into force, England has joined Wales, Spain and a number of other European countries in switching from an opt-in to an opt-out organ donation system. This means that unless an individual expressly registers a desire not to share their organs with the NHS when they die, they will be presumed compliant in the organ transplant scheme. It’s hoped with this new regulation in place hundreds of lives will be saved every year and also help reduce the shortage of BAME organ donors.
Early this year Bally’s family started the Kidney4Bally Facebook page and campaign with a hope of finding a match for Bally, and also to create awareness about organ donation & encourage more people especially from BAME communities to become organ donors.
Kiran says, ‘’ We got this campaign live overnight and the response we have received so far has been incredible. The stories, the experiences the advice and the positivity we have been receiving from people we don’t know personally has become so personal and they have just become an extended family for us. It’s like Bally has got the condition but we as a family live with it. It’s like we’ve got it too’’. (For more information or support people can visit their campaign page: https://www.facebook.com/kidneyforbally/)
Bally is back on the transplant list hoping to get a donor soon. And despite the current corona virus pandemic he is ready to take the risk and get a transplant.
He says, ‘’I can no longer wait due to my current health condition. I have already waited for 2.5 years and so I need to take this chance’’. I think this is a risk I am willing to take purely because it will be better than what my life is at the moment. What life I currently have is not life’’.
Video link to this report : https://www.facebook.com/GagganSabh07/videos/705857920050108
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