Post-operative care costs scare many from kidney transplant
By Milliam.Murigi, June 26, 2023After a week of suffering from fatigue, backaches, lack of appetite, and chronic vomiting in January 2020, Sally Wanja Kamau was diagnosed with gas and ulcers.
However, she was not getting any better, so she decided to seek a second opinion and the second doctor correctly diagnosed her with Chronic Kidney Disease (CKD).
“Every Monday and Thursday for the past three years have been my dialysis days. I don’t pick up any calls on these days, because I want to dedicate my four hours of dialysis to exactly that. I do not allow any excitement, anxiety, or anything else that could trigger hypertension I suffer from, which is the primary cause of my kidney illness,” begins the mother of two.
While the dialysis routine is not the ideal situation for Wanja, who is fit for a kidney transplant and even has a volunteer who is willing to donate her kidney, she has become accustomed to it. “Dialysis is not the best way to treat kidney disease, because there are times I convulse while going through it, but I prefer to remain on dialysis because of the potential risks of a transplant.
One of the risks is the rejection of the new organ, which will still force me to go back to dialysis. This scares me to the bone,” she shares.
According to the National Health Service the average lifespan of a living donor kidney is about 15 years, so it’s likely even if Wanja receives a kidney transplant today she will still need another one in the future.
Another thing that scares her is the lack of financial muscle to buy the immunosuppressive drugs one is required to take for as long as the transplant lasts, to lower the body’s ability to reject a transplanted organ and frequent blood tests and reviews among other post-transplant care requirements.
She has also heard stories from other patients who have received transplants and had to deal with the side effects of the medications or experienced complications during or after the surgery. Despite the inconvenience of dialysis, Wanja feels that it is the safer option for her.
“Kidney transplant as we all know it is not a cure, but a treatment and the treatment is very expensive. If you have to manage it, you have to have continuous income, which I currently don’t have, I survive on well-wishers and my mother who sometimes also does not have the money to buy me the hypertension medication, so I imagine the immunosuppressants and it sends chills down my spine.”
Though many people believe that renal patients remain on dialysis for lack of compatible donors/donated organs, Sally’s case paints a different picture.
John Gikonyo, President of the Renal Patients Society of Kenya who is also a kidney recipient says Sally is not the only patient who is afraid to go for a transplant. Majority of those on dialysis prefer to remain on dialysis rather than going the kidney transplant way.
The reason is apart from the potential risks associated with the transplant they cannot afford the pre-transplant evaluations and post–transplant care. Also kidney transplant is a family decision since the donor for now must be a living relative and very few families are ready to go this extra mile because of the expenses.
“Currently we have between 6,500 and 7,000 renal patients who are on dialysis and the number is increasing. A good number are those who haven’t even bothered to pursue other available treatment options, because they know they cannot afford those services,” says Gikonyo.
He says most patients feel dialysis is the safer option because, with an active National Health Insurance Fund (NHIF), all the dialysis sessions are covered in public and private hospital, as well in dialysis centres while this is not the same with a transplant. Dialysis is covered to the tune of Sh1 million per year. For transplants what is covered, yet not fully, is only the surgery, which is covered to the tune of Sh500,000 yet one requires about Sh2 million for that surgery.
Apart from the surgery top-up, one is also needed to do pre-transplant evaluations, which costs about Sh200,000. After the transplant, one is required to be on immunosuppressive medication for as long as the transplant lasts plus other care, also not covered by NHIF and most insurance companies. Post–transplant care, Gikonyo says is the biggest elephant in the room and is the one that makes people avoid kidney transplant.
“Post-transplant medication alone can cost one approximately Sh60,000 for the first few months after the transplant to about Sh20,000 after drugs are reviewed per month. Remember this amount is for someone with no complications and it is a lifetime undertaking. If there is any complication the amount increases. On top of that, one still needs medication for the primary disease,” adds Gikonyo.
Apart from medication, one also needs to attend clinics after the transplant for review. The minimum number of clinics one can attend is four clinics per year.
For the clinics in public hospitals, someone without any complication post-transplant consultation is between Sh1,100 and Sh4,000 depending on the facility or nephrologist, and lab tests go for Sh6,500. Sometimes one can do repeat tests depending on the services offered during testing, which means more money will be spent.
“If NHIF can cater for the post–transplant medication and other requirements the way they do for dialysis, it would be a relief to patients who are still on dialysis because they cannot afford the postoperative care,” says Wanja.
Gikonyo explains there is need for the government to start supporting the pre-transplant evaluation and offer a comprehensive transplant cover as well as a comprehensive post-transplant care cover. If this is done those who are on dialysis will start to see transplant as an option.
This will help because we don’t even have adequate infrastructure for dialysis as a country yet the numbers are increasing every day.
“What is making me consider a transplant is that I have also realised that being on dialysis is overall expensive. For example, even though my dialysis sessions are paid for, I still need medication for hypertension monthly, which is Sh15,000.
“Also, I am on a special diet, since when on dialysis, a person doesn’t eat anything and everything. I am heavy on protein more so white meat and moderate with red meat, but I do eat liver. I avoid food and fruits with potassium, especially bananas and potatoes. My food for a month costs an average of Sh20, 000 inclusive of fruits and vegetables and that is a squeezed budget,” says Wanja.
She also always pays a Sh4,000 consultation fee every time she sees a doctor. There are blood work tests too, such as urea and electrolytes tests, liver and kidney function tests and so many others, which cost nothing less than Sh20,000. She also gets opportunistic infections, such as cold and flu, which must be treated and the occasional headaches after dialysis. In a month especially the month she is going for review, she uses about Sh60,000.
Gikonyo says if universal healthcare is achieved, the number of kidney diagnoses will go up because of increased access to healthcare. If this happens, current funding for dialysis will not be sustainable. The good thing is that it is cheaper and most cost-effective to maintain a patient on transplant than on dialysis.
“The government needs to give people the ability to move from dialysis to transplant to save the dialysis package. This will also save some money.
“For example, currently, one person on dialysis is covered to the tune of Sh9,500 per session and the minimum number of sessions one can undertake in a week are two. Meaning in a month a patient on dialysis uses Sh76,000 while a stable patient on transplant will spend Sh30,000 per month,” reveals Gikonyo.
One of the biggest challenges for Kidney specialists has been avoiding rejection after transplant through the lifelong medications known as immunosuppressants, which pacify the body’s immune system limiting its reaction to a new organ limiting rejection of the new organ.
According to Kenyatta National Hospital Renal Unit, the average cost of immunosuppressants ranges between Sh30,000 and Sh40,000 per month.
Other things the government needs to do to encourage more patients to go for a transplant are expanding the donor pool by allowing living non-related donation, but this needs proper regulation to avoid organ trafficking, creating a legal framework to operationalise the Health Act 2017 which allows deceased organ donations and promotes alternative donation options, such as a kidney-paired donation.
Kidney-paired donation is a programme that matches transplant candidates with suitable living donors. It gives people the chance to become living kidney donors while ensuring that someone they want to help receives a needed kidney, even if they are not a direct match.
“The donor pool (those who can donate) is shrinking because the current regulations allow donation only from a relative who is alive. This reduces the number of available donors, as well as the ever-reducing family sizes. The increasing number of non-communicable diseases is also making many people become recipients instead of donors,” says Gikonyo.