Thursday, March 10 was observed as World Kidney Day under the theme ‘Bridge the Knowledge Gap to Better Kidney Care’.

The World Kidney Day Joint Steering Committee has declared 2022 to be the year of “Kidney Health for All”. Chronic kidney disease (CKD) is common and harmful: one out of 10 adult people have it and if left untreated it can be deadly. Kidney disease related mortality continues to rise yearly and is projected to be the fifth-leading cause of death by 2040.

In Jamaica, renal failure is considered the most expensive disease, with most patients expected to dialyse three times weekly at a cost of $15,000 per session, racking up a bill of $180,000 per month. This is unaffordable for most households

The Kidney Support Foundation of Jamaica is a non-profit organisation that was established in 1970 to provide support to all kidney patients, placing special emphasis on patients in the public hospitals. However, funding has been difficult to come by, thus limiting the quality of support patients can receive. But they carry on the work, thanks to volunteers like retired teacher Adina Davis and Professor Lawson Douglas, the first person to do a transplant in Jamaica.

Still, the foundation has been struggling with its offices currently closed and there is criticism that the programme does not go far enough to involve patients in areas like outreach and counselling.

There are five public hospitals that offer dialysis but they are all full. Every year there are about 600 new people who require treatment for end stage kidney disease.

Professor Douglas said: “Before 1960 there was no haemo dialysis in Jamaica. The first transplant was done in 1960 and by 1993 over 100 transplants were done. Since then, transplants are done by an English team that come to Cornwall Regional Hospital and do two or three surgeries.”

The problem gets more complex in rural Jamaica, Professor Douglas explained: “When you have kidney disease in rural Jamaica people say you’ve been obeahed and find ritualistic ways to try and correct the problem.

Typical life expectancy is just a year without treatment. “It used to be the case where when you are on dialysis you would live for 10 years or so but things have improved to the point where you can be on dialysis almost all your life. With a successful transplant you can live for up to 30 or 40 years.”

Faith is the sole breadwinner in her family and her husband was diagnosed with stage five renal failure two years ago. She has had to be working from home so she can care for him. She said the experience has been nothing short of a nightmare. She has to wake up at 4:00 am twice weekly to get him to dialysis. “After a while it takes a toll on you physically and mentally. You watch the person change literally and it breaks your heart. The body goes through a lot and after each session he is so drained that he can’t do anything but sleep. It is impossible for him to get a job because he is so sick all the time, so it has put real pressure on our finances. He really should be going for treatment three times per week but we can’t afford it. Kidney disease is a really expensive illness. Everything has changed. Now I have to cook two different meals because his diet has had to be changed drastically. His entire wardrobe has also had to be changed…our entire lives have changed.”

Just over 600 people are diagnosed with kidney failure every year in Jamaica. Faith said diagnosis was the most frightening thing for her husband and herself. “You suddenly hear about this illness and the first thing you think is that is the end of the road. We need more public education campaigns to help families adjust. There should be outreach programmes, supported by adequate counselling. I had to pay for my own counselling.

“Many times I think about starting my own support service because people are suffering. I am working and I find it so difficult I can only imagine how those who are unemployed cope. Sometimes you go to the public hospital facilities and you see people who have been waiting for five days to get onto a machine. The setup costs are very high and because you have to pay for the insertion of a catheter and a host of tests and you have to pay upfront. I think the Government needs to set up more dialysis centres and give a tax break to the private ones because most of what is required for treatment comes from overseas and everything is affected by movement in the US dollar.”

There are about five public hospitals with dialysis machines but as Professor Douglas explained they are overburdened. “When you have more than 300 new diagnoses every year with more and more people coming into the system you struggle with capacity,” he said.

There are two nephrologists at the Kingston Public Hospital, four at the University Hospital of the West Indies (UHWI), one at Spanish Town Hospital, one in Mandeville and one at Cornwall Regional Hospital. There is also one paediatric nephrologist at UHWI and one at the Bustamante Hospital for Children. This seems woefully inadequate to treat a population of three million people.

Dr Byron Babulal is one of the leading nephrologists in the country. He said while kidney disease is a major problem across the world, there is much more that can be done in Jamaica to provide patients with better access to quality care. He cited some of the challenges the Government is facing, alluding to the high costs involved in setting up treatment centres. “It is very expensive and in some parts of the Caribbean there isn’t a single dialysis centre. But here in Jamaica we face a major issue because the study and practise of nephrology is very taxing and very few medical students are interested in doing the additional training that is required. It takes six years to qualify and many feel that the return on investment is not worth it when there is better reward in other specialties.”

On the issue of why Jamaican nephrologists do not undertake transplants, he said there is a lack of organisation. “You need a proper transplant nephrologist and I had volunteered to go away for six months to do the course but the Government refused to give me the go-ahead. I got a sponsor to pay for the tuition but I just couldn’t get the paid study leave. A room was sponsored by ATL at the KPH for the transplants but the interest from the Government was very low. A transplant nephrologist needs to be on call 24 hours a day and I was willing to do that at no extra pay but they were not interested at the time. They are now showing interest but the horse seems to have gone through the gate.”

Derrick used to be a bus driver but fell ill three years ago. He had to quit his job and is now a dialysis patient at one of the island’s public facilities. He said it has been a rough ride battling kidney disease.

“That initial shock when you first hear about it stays with you. You have to learn about what is a really complicated problem very quickly. I was blown away when I started hearing about the costs associated with the initial treatment. I just couldn’t afford it. I had to get friends and family involved but that was only to get setup for treatment. I couldn’t afford to go private because suddenly I was so sick that I was unable to work but the public system is so chaotic that you get frustrated at times and feel like you want to give up.

“There are times when you have to wait as long as five days so you just have to make up your mind to stay because if you leave, someone will take your place. There is no good waiting facilities so you end up on the floor or on a bench. Sometimes you get so hungry but you can’t take a chance to go and get food, and you’re not allowed to eat so many things. The system is just crazy and I think the Government can do more to help us. Every parish should have at least one centre to prevent the need for people having to travel all the way from deep-rural Jamaica and still not be treated,” Derrick said.