How kidney patients are suffering

“Every day I lie to comfort my wife that everything is going to be fine but in reality things are falling apart,” says Babu Raja Rajthala. Rajthala had to spent nearly all his wealth when his wife, Kesari, 42, had to undergo renal dialysis for around two years before she could get a new kidney. In the two years, Rajthala had already sold all his properties back home in Hetauda for his wife’s treatment. The long stay in the expensive capital city compounded his financial woes. By the time of the transplant, Rajthala was penniless and he could not even buy post-transplant medicines.

 

The couple’s children are suffering too. “They can’t contin­ue their college education because I can no longer pay their fees,” Rajthala laments.

 

It could have been a different sto­ry if the Rajthala family had access to the government grant for kidney failure patients right at the start. His wife received the government grant only after seven months of the operation, by which time even her new kidney was damaged. To make the kidney fully functional again, she has to undertake another round of expensive treatment, and Rajthala family simply does not have the money.

 

The Rajthalas are far from the only sufferers. According to the Health Ministry, around three million Nepalis suffer from kidney-related diseases, and there are currently more than 30,000 patients whose kidneys have failed. That number increases by 3,000 every year.

 

Renal disease is considered dan­gerous in Nepal, as the patients can live only if they can afford the expensive treatment.

 

Limited options

 

Those diagnosed with kid­ney failure have only two options—to undergo dialysis for the rest of their lives or get another kidney. Both processes are costly. Dial­ysis—in which an exter­nal machine temporarily replicates the functions of healthy kidneys—doesn’t cure the underlying dis­ease. A patient has to undergo dialysis 2 or 3 times a week, depending on the severity of the problem. The procedure costs Rs 6,000-9,000 a week; whereas it costs around Rs 400,000-500,000 to transplant a kidney.

 

The government made dialysis and kidney transplant services free from 2016-2017 and the services are now being provided in over 50 private and government hos­pitals across Nepal. For a single patient, the government bears almost Rs 550,000 on kidney trans­plant and Rs 2,500 per dialysis. The total yearly subsidy comes to over Rs 1 billion a year.

 

“There have been no recent studies but I believe the government initiative has encouraged more people to seek treat­ment, which has saved many lives,” says Dr Pukar Chandra Shres­tha, Executive Direc­tor of Human Organ Transplant Center (HOTC) at Bhaktapur.

 

Many patients, few machines

 

But according to data from the Department of Health Services (DOHS), until May 14, 2018, there were only 410 dialysis machines pro­viding completely free services. The patients outnumber the machines by a huge margin.

 

“Every day, the number of patients is increasing whereas the number of machines remains con­stant,” says Dr Rajani Hada, Head of Kidney Department at the gov­ernment-run Bir Hospital. “Also, the existing machines are occupied by old patients who need continuous treatment, sometimes preventing the new patients from enrolling.” According to Hada, a dialysis session lasts around four hours and even if the hospital manages to work in three shifts on a single machine, only three people can receive the treatment per day.

 

Jung Bahadur Thapa Magar, a patient who recently got a kidney transplant at HOTC, chose to ignore the free service and opted to pay out of his own pocket so he could receive timely treatment.

 

“It takes around 1-2 months to complete the formalities for free services,” says Magar. “Even after that, there is no guarantee of timely service.”

 

Government officials corroborate his claim. “It takes a minimum of four months to pro­vide the money to the victim,” says Prakash Ghimire, an officer at the DOHS. “The decision-making is dismally slow in our health bureaucracy.”

 

There are currently more than 450 patients registered for free dialysis at HOTM, many of them on the waiting list. New enrollments have been can­celled as there are not enough dial­ysis machines to meet the demand. Many of the existing machines are not functional or only partly so. In Bir Hospital, 19 dialysis machines lie unused because there aren’t enough trained human resources.

 

The medi­cines are expensive too. The government provides almost Rs 150,000 to every kidney patient to buy medicines after a transplant. But often that is not enough. In order to protect the newly transplanted kidney, a patient has to rely heavi­ly on medicines. The monthly bill for medicines comes to around Rs 20,000-25,000 for a couple of years after the transplant. Gradually, the cost decreases to Rs 10,000-12,000 a month, which is still expensive considering that the patients have to consume medicines all their lives.

 

Bimala Basnet’s 14-year-old daughter Binisha has been under­going dialysis for two years. Basnet, who sells fruits inside the HOTC premises, has an unpleasant impres­sion of transplant. “I’ve only seen transplant end people’s lives. I don’t recommend it unless the patient’s family has at least Rs 500,000 in reserve,” she says.

 

Ghimire of DOHS feels providing medicines to hospitals would be more effective than giving cash to the victims, and says that a review of the existing mechanism is already underway.

 

Prevention is cure

 

Nephrologists are pushing the idea of kidney transplant as a per­manent cure, but lack of human resources and infrastructure and unclear rules are major hurdles. As per government rules, only relatives can donate a kidney to a patient.

 

“This limits the availability of healthy kidneys. Moreover, kidneys may not match even among rela­tives, and older people’s kidneys are not healthy enough,” says Dr Dibya Singh Shah, Professor and Head of Department of Nephrol­ogy at the Tribhuvan University Teaching Hospital in Maharajgunj. According to a DOHS report (July 16, 2016-May 14, 2018), only 203 could get new kidneys in the period.

 

Health prac­titioners in the field blame the government for introducing the free services without proper homework. Renal diseases can be easily cured if diag­nosed early, they say, and yet there is no initiative in early diagnosis and prevention.

 

The average cost for a kidney test is only Rs 300. Health practitioners believe that establishing health clinics across the country and pro­moting regular check-ups is the right way to go about it. Also, there is a need to decentralize dial­ysis services away from major cities.

 

“Those with dysfunctional kidneys need lifelong dialysis. How can a poor person afford it?” Shah asks rhetorically. “If only the focus shifted to prevention, things would be much better. Until then, it’s a vicious circle of medications and surgeries.”

 

With the number of kidney patients steadily rising in what is still a poor country, how long the government will continue to support kidney patients is also an open question.