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.
.jpeg)
0 comments:
Post a Comment