We need better systems, subsidised costs for dialysis patients

– Faye Abigail Yong tells her story

By Lakhram Bhagirat

“It is not that I have a problem with the treatment (for kidney failure patients) per se. I have a problem with the cost of the health care in the country. Dialysis cost between $12,000 to $15,000 per session, that means that the average person have to pay between $120,000 to $180,000 per month and no normal middle-class Guyanese person can do that.

“At the public institutions, they don’t offer dialysis to citizens. They only offer dialysis to emergency cases, so if you’re admitted to the hospital and you need dialysis you can get it there, but once you leave the hospital, you’re on your own. It needs to change,” Faye Abigail Yong says.
For the past three years Yong has been on dialysis after both of her kidneys failed owing to her diabetic condition. November is considered as Diabetes Awareness Month, and Yong is on a mission to raise awareness about diabetes as well as the other diseases associated with the condition.
About 10 years ago, she was diagnosed with diabetes, but in her case, it was somewhat too late. Too late in the sense that her diabetic condition had progressed to the point that it was already causing permanent damage. It first attacked her eyes in the form of diabetic retinopathy, causing her to lose vision in one of her eyes. To treat it, she even travelled to Trinidad to have surgery.
In addition, about three years ago, she was diagnosed with kidney failure and then her complications increased.

Diabetic nephropathy or kidney failure is a serious kidney-related complication of Type 1 diabetes and Type 2 diabetes. It is also called diabetic kidney disease. According to the Mayo Clinic, about 25 per cent of people with diabetes eventually develop kidney disease.
Diabetic nephropathy affects the kidneys’ ability to do their usual work of removing waste products and extra fluid from the body. Kidney disease may progress to kidney failure, also called end-stage kidney disease. Kidney failure is a life-threatening condition. At this stage, treatment options are dialysis or a kidney transplant.
“Both of my kidneys have failed. Because when you are on dialysis that means you are at stage five of kidney failure and that means you have less than 20 per cent of your kidney functions working,” Yong said.
It meant that she had to be placed on dialysis to remove the waste and toxins from her blood via a machine as her kidneys formerly did.
“So, within four hours, it (the dialysis machine) would take all the blood out, filter it, clean it and everything and then your body reuses it. This is a four hours process and you need to get this done at least three times per week, because normally your kidneys are always working, but for kidney patients on dialysis your kidneys are only working those three times when you go to dialysis,” she explains.
In Guyana, the public health-care system does not offer dialysis to persons unless in emergency cases when they are admitted to the institutions. That places a serious financial burden on the patients since many of them cannot afford the dialysis sessions.
In addition, kidney disease patients would have to expend large amounts of monies to purchase supplements and medications. Yong says that many times the Georgetown Public Hospital would be out of critical medications.
Four times this year, the hospital has been out of an injection that is critical to raising haemoglobin levels for patients. That injection costs $36,000 for two weeks’ supply and it is required after every dialysis session.
One would expect that since so many persons are basically living without functioning kidneys, then there would be some mechanisms in place for organ donation and transplants, but that is not the case in Guyana. There is no centralised transplant system in the country and the only way one can get a transplant is if they are able to source someone who is the exact match to them.
“The only way you can get a transplant is if you bring a family member who is willing to donate and then you get tested and the testing takes between $750,000 to $1 million, but the actual surgery itself is being done free at the Georgetown Hospital.
“They do pre-screening, but the person have to have your blood type and stuff, so you have to do your own due diligence in certain ways. So, that is one of things we are fighting for, for them to start a donor programme in the country not just for kidneys but for hearts and other organs that could be transplanted,” Yong said.
The kidney dialysis patient, when she first heard her diagnosis, cried for over a week in the hospital for a number of reasons. She did not know where the money was going to come from for her dialysis treatments or the type of life she would have. Today, she serves as a pillar of strength for many of her fellow patients who are in the same position and it is in this area, she wants to see the Health Ministry do more.
She related that one of her friends recently died because of lack of financial access to pay for her dialysis treatments.
“She had NIS, but sometimes the NIS runs out and the time they take to get back their cheques, they have to pay through their own pockets to the dialysis centres for dialysis and sometimes they don’t have that money to pay. The lady did not have dialysis for almost a week and then she was hospitalised and died a few days after,” she recounted.
Yong is advocating for the Health Ministry to improve health care for kidney patients. She said that currently the Georgetown Public Hospital Corporation (GPHC) has just about two nephrologists – kidney specialists – and patients would not see them. Instead, patients are being looked after by Internal Medicine Doctors who are many times unable to answer specific questions about their diseases.
In that regard, she is hopeful that more nephrologists can be brought on board as well as improved access to dieticians and nutritionists.
“We have never met a nutritionist/dietician at the hospital to tell us what we need to eat and what to stay away from. For example, how much liquid we could drink a day because whilst you’re on dialysis you’re allowed to drink a certain amount of water a day. For me I don’t go above 32 ounces a day. Some people could drink 40 ounces, some people could drink more whereas some people could drink less. All of these things are important.
“Also, in terms of mental health I’ve met at least 5-6 persons at my dialysis centre who have talked about suicide or wanting to kill themselves. They have social workers within the system at GPHC. But they never get into contact with us; they never reach out to us; we never talk to them and that is so wrong,” she said.
She also wants to see better systems in place to educate kidney disease patients about their condition, since doctors would just tell them they needed dialysis without any further explanation. Yong is also calling for the doctors to conduct more AV Fistula procedures earlier to eliminate the catheter which causes infections in dialysis patients.
For now, she continues her battle against kidney disease while advocating for increased patient care.