In this interview, Dela Idowu, the founder of Gift of Living Donation, a charity established to raise awareness of the benefits of living donation, tells BIODUN BUSARI why chronic kidney disease is prevalent among Nigerians and blacks in the UK
What is the idea behind the kidney donation initiative you founded in the United Kingdom?
My name is Dela Idowu. I’m the founder of the Gift of Living Donation and the Black Living Donor Choir. I set up these two initiatives after coming forward as a living kidney donor for my brother, who had a kidney disease. I didn’t want him to spend four to five years on dialysis, which is almost the average for the African and Caribbean communities in the UK. In 2011, I came forward for him, but unfortunately, I could not proceed because we did not match. However I wanted to use the experience to raise awareness of kidney disease and living donation within the Black African and Caribbean community in the UK.
How has the experience been since the inception of the initiative?
One of the reasons I set up these initiatives for the African and Caribbean communities was to reduce the number of people who are diagnosed with chronic kidney disease and to reduce their time on dialysis. When someone is from the African or Caribbean community, the person can spend up to four or five years on dialysis here (in the UK). This is not because we don’t have black living donors but based on unawareness. So, what we do is to raise awareness on donations. This is where someone can donate a kidney for their family or friends so they can have a transplant. It’s absolutely a safe operation. That’s the best treatment option for somebody with kidney disease instead of going on dialysis.
What is the role of the Black Living Donor Choir in this?
There are two programmes as I mentioned. The first one is our cheap programme, community hospital, and also patients and support. This is where we have kidney transplants. However, our choir is our community, which we use to raise awareness in the black community as we combine music and songs to tell donor stories. Every member of the choir has donated one of their kidneys to either their friends, family, or even strangers. Using that combination of their stories and music is absolutely a fantastic way to raise awareness and educate people. At the same time, we are entertaining them. With this, we have a lot of people coming forward as donors through the choir because it’s entertaining. And it’s a true life experience.
How long has this initiative existed and what are the achievements you have recorded so far?
I can’t really be specific with data at the moment. But since we started, we’ve had hundreds of people who have come forward with conversations about being donors that they wouldn’t have had with their families. I’d say about 20 to 30 patients have had potential donors who have come forward. You have to understand that even if we have so many people who come forward to donate their kidneys, the factor is that people from African and Caribbean communities are more susceptible to diabetes and high blood pressure, and in most cases, they are not able to continue because of those two sicknesses.
We just finished doing a one-year pilot project with three transplant centres in the UK, where we are collaborating with surgeons and doctors. We let them know that when they have black patients as their patients, they should refer them to our community. From that way, we have donors for them maybe from Nigeria, Ghana, or the Caribbean, and with that experience, they are more likely to consider talking to them.
The biggest barrier is that patients are not talking to their families because it is a very difficult conversation to have. It took my brother about eight months to tell me that he had a kidney disease and he needed a transplant. That’s what we do; we try to empower patients to have this conversation with their families.
What is the data like for Nigerians with kidney diseases in the UK?
If you take the UK as a whole, the majority of the people from African and Caribbean communities are living in London. We have about 800 of them with kidney diseases who are waiting for transplants. But, if we take that figure close to home, and take the South-East of London for example, where we have a high proportion of Nigerians, I can tell you that, though it is sad, the high percentage of these people who have been diagnosed with kidney diseases and waiting for transplants are Nigerians from this area.
That’s why we really need more awareness within the Nigerian community, not only in Nigeria but also in London. People should know the impact kidney disease is having on our community. The general population of Nigerians living in the UK doesn’t know the impact of kidney disease on their lives, and that’s why we are doing this.
Is kidney disease peculiar to the African and Caribbean communities in the UK?
A lot of research has been done as to why people from the black community are more disposed to chronic kidney disease. One research says it is genetic. Black people are more genetically disposed to kidney disease. We are still working on why that has to be the case.
And the second research, which is very important is about our diet. We, Africans and Blacks in general do consume more salt in our diets. Salt is one of the causes of high blood pressure especially within our community. This should help us to think about what we take in our diets as individuals. We do a lot of preventive work in terms of letting them know the amount of salt taken in our diets. Our foods are quite starchy and starch contains a lot of sugar. These are the issues that cause kidney diseases. But basically, the black community is more genetically disposed to kidney disease than other communities.
What mechanisms do you use to raise this awareness?
I need to say that the Black community is not working on improving its health. It’s sad. Africans and Caribbeans don’t take it as a top priority. So, our initiative lets them know how to take their health issues seriously, especially in terms of diet as to what to eat and drink. Then, we let them know the importance of exercise.
As we talk about awareness, we intensify prevention. This awareness is also in churches, events, and cultural settings, but a lot also needs to be done.
Do you have this project in Nigeria?
I was born in the UK but a proud Nigerian from Ijebu-Remo, Ogun State. I do come home often. I started community service in 2000 when HIV/AIDS was pandemic globally, and especially in Africa. With my local church at the time, we set up a charity in Otukpo, Benue State, to educate them. We were able to provide educational support to a lot of children who have lost their parents to AIDS.
In the light of this, as a charity, it’s important for us to think of what we can do for Nigeria. We have people in the UK who have families at home. But, at the moment we haven’t branched out to Nigeria because there is a major problem here in the UK. We want to first address the problem in the UK before we spread to work with other spaces outside the UK.
How much does it cost to have a kidney transplant?
It costs the NHS £36,000 a year to keep someone on dialysis. So, we need to change that. We need to make sure we encourage more people in our community to come forward as living donors for their loved ones.
In Nigeria, I think it’s about N150,000 to put someone on dialysis for a week because three sessions are involved in a week. That’s why Nigerians need awareness. Prevention is better than cure.
Having said that, Nigeria, especially, Lagos has got a fantastic transplant centre. If you are a Nigerian who has a kidney disease, and you have a donor, you don’t have to travel to India for a transplant because there is no need. We need to start that narrative because we have great consultants and expertise in Nigeria.
What has your experience been generally doing this?
Sadly, we are still the minority here, and we have to shout the loudest here. There are still racist barriers. Racism still exists because at some point or the other we have faced racism here. You may not have it directly on your face, but it’s there. All I have to say is that perseverance is key, do-not-give-up attitude and setting focus on the goal have been working for me. I’m 65 years old now so I’d say that’s what has made me succeed.
What is your take on Japa syndrome?
There have been changes here in the UK, and I like to say that the grass is not always greener on the other side. And it doesn’t matter who you are, we will always be treated as second-class citizens because this is not our home. I know for a fact that if Nigeria has good infrastructure, constant light, security, good education, and good healthcare facilities, 50 per cent of us who are abroad will not be here. We have the talents, wisdom, knowledge, expertise, and other qualities, so why are we not putting them back into our country? We shouldn’t have been in the UK, the United States, or other developed countries in the first place if things work well at home. But sadly, we have to be here.
Nigeria just celebrated its 64th independence anniversary. What’s the feeling like for you?
Well, Nigeria still prides itself as the King of Africa. But, I believe with the natural and human resources we have, we should have been the strongest country in Africa and even competing with developed nations. But, this is not the case. All I have to say is that this boils down to leadership. Until we have stamped out corruption in that country, Nigeria is not going to make headway. It is almost like corruption is in our DNA because as each government comes with a promise, it doesn’t just work. Some countries don’t have as many resources as we have but are 10 times better than us.
