“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.
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.