Forced to choose a lifelong condition

In February 2018, Mr Michael Wainaina underwent a kidney transplant that saved his life. With the new kidney, he felt like he was getting another chance at life.

Mr Wainaina knew there were many great things that came with a kidney transplant, such as having more freedom.

The 45-year-old, however, did not realise how hard taking care of his new kidney would be. Just like all other kidney transplant patients, he needed to take immunosuppressant drugs to prevent his body from rejecting the organ.

While the National Hospital Insurance Fund (NHIF) covers the cost of the transplant, it does not cater for the immunosuppressant drugs. Mr Wainaina needs the drugs for the rest of his life. Missing even one could cost him his new kidney.

The drugs are not cheap. They cost between Sh20,000 and Sh45,000, varying from patient to patient depending on the number of drugs to be taken.

After asking around, he realised importing the drugs from India could be cheaper and more manageable than buying from Kenya. “After a transplant, patients should not have to worry about whether they can afford the treatment needed to keep their new kidney. I buy six months’ worth of drugs from India and it costs me Sh96,000 every time,” he says.

Even with the tax imposed on the drugs after arrival in the country, Mr Wainaina says he still pays less than he would have here in Kenya.

Seeking treatment in India post-transplant is not a cheaper option. Mr Wainaina says he had to travel to India because his blood pressure was not manageable. He says the procedure of transferring money from NHIF was painstakingly slow and he had to wait for two weeks for the process to be done.
“I had a promissory note from NHIF and doctors from Apollo could not do anything until the money was transferred. My brother, who was my donor, had to wait with me despite taking some time off work thinking it would not take long. It cost about Sh1.3 million for everything, including six months’ immunosuppressants,” he says.

BLOOD PRESSURE

The cost of the immunosuppressants locks many out of a transplant. Patients who cannot afford the drugs have no option, but to stay on dialysis for the rest of their lives because it is covered by the NHIF.
Nephrologist and Nairobi Hospital CEO, Dr Christopher Abeid, however, says compared to dialysis, patients with chronic kidney disease who undergo a transplant live significantly longer, have fewer complications and better quality of life.

“With adequate dialysis you can live up to 40 years when blood pressure is optimised. However, when it comes to mortality, 1.2 transplant patients out of 100 die compared to about 10.4 out of 100 who die while on dialysis,” says Dr Abeid.
He adds that transplants are preferred because patients go back to functionality almost immediately while those on dialysis are always worn out and can barely keep up with their day to day activity.

Dr John Ngigi, the head of the Renal Unit at Kenyatta National Hospital, says these gains however stand to be lost if the current NHIF policy fails to cater for crucial medicine required to keep the transplant viable after the surgery.
“NHIF pays Sh500,000 for the surgery, which is good. However, the problem is the patients need lifelong drugs which cost about Sh40,000 a month in the first year and that is not covered by the insurer. NHIF is better off raising kidney transplant benefits because it would make more economic sense. Dialysis is Sh19,000 a week and in a year that is about Sh936,000 yet the post-transplant medication is Sh480,000 a year,” says Dr Ngigi.
Mr Wainaina, who left formal employment to start his own business, still depends on his brothers for help to buy the drugs after the tremendous loss of revenue, owing to his expenses.

His kidneys failed in 2015 and at the time, NHIF did not cover the cost of dialysis which he needed twice a week and he had to pay out of pocket until April 2016. “I spent Sh400,000 on dialysis excluding the cost of admission. My body was constantly fighting me, I lost my appetite, I was always fatigued,” he says.

RENDER USELESS

People who have had a transplant are familiar with this struggle much like Mr Anthony Waweru who lives in constant fear of what might happen to his kidney once he runs out of money.
Mr Waweru, a boda boda rider who takes 10 different drugs, says he has been admitted to hospital on several occasions to get the drugs.
“I usually go to Kenyatta National Hospital and ask if they can admit me so that I can get that month’s medication which costs Sh26,000 as an inpatient,” he says.
He had been on dialysis from 2015 to 2018 and he fears that when family and friends cannot chip in to help with the drugs then his kidney will fail. “I honestly do not know how I will keep paying for the drugs for the rest of my life because I do not earn that much and I am a burden to my family as it is. The thing is, if I fail to raise the money I have to go back to dialysis and that will only render me useless because I remember what it was like. I would be in dialysis for eight hours a week and would always be tired, affecting my work,” he says.
The pain and fear is what keeps people like Mary Wamuyu from considering the alternative of getting a kidney transplant despite the fact that she cannot do much while on dialysis.
Ms Wamuyu says she has seen people who failed to cover the cost of treatment and have their organs fail and they were put back on dialysis.
“It is not a choice to be on dialysis for the rest of my life. This is something I am forced to deal with because I cannot afford the drugs,” says Ms Wamuyu.

SIGN PETITION
She says since NHIF pays for the two sessions of dialysis every week she felt that was a better option than having to look for money to pay for immunosuppressants.
“I do not have to look for this money every month because it is covered by NHIF. If they would do the same for the post-surgery drugs then we would all jump for that opportunity because, after all, this is not the kind of life anyone should be forced to choose,” she says.
Dr Ngigi says Ms Wamuyu and other patients who are on dialysis for a long time are simply putting off the inevitable because of the circumstances they are in. “A transplant means better patient outcomes and long run cost advantage. The patient must endure the undesirable quality of life and higher risk of complications that come with dialysis while desperately waiting for a second transplant,” he says.
Despite signed petitions from nearly 30,000 patients on dialysis and their relatives demanding that the national insurer covers post-transplant medication for all and not just civil servants nothing has been done to address the matter.