Indebted kidney patients hope for longer life with immediate implementation of free dialysis decision (Commentary)

Pabitra Guragain / Kathmandu: With a feeble body, wrinkles on her forehead and a little hope for (longer) life, kidney failure patient Binita Oli, 31, from Ota VDC of Rolpa, a hilly district in mid-western Nepal, is waiting for her turn to undergo hemodialysis at the Bhaktapur-based Human Organ Transplant Center. This is now her routine of life, with the need for a dialysis two to three times a week.

Just two years ago, life for Binita however was simple and easy-going as she was living apparently a healthy life. But, all of a sudden she started suffering from headache, vomiting, muscle swelling and back ache. Her husband took her to neighbouring India for better treatment there with the hope for early diagnosis but in vain.

Her toughest days began, as she described, after she was diagnosed with kidney failure 10 months ago in Nepalgunj and has been under regular dialysis (two to three times in a week) and medication since then. Despite carrying a huge burden of loan, Binita is seeking a longer life for the sake of her children. Now, the Oli couple lives in a rented room near the Center as it not possible for them to visit the Center for regular service from their hometown. The Oli family from a rural village have already taken loan of Rs 1.5 million for the treatment of Binita.

She feels pain in her heart when she thinks about the future of her family mainly of her two daughters “‘Life has been painful for me neither I can leave a healthy life nor let myself to die,” said Binita.

Binita is just an example of the many kidney patients seeking a longer life with the help of medication but carrying a huge burden of loan due to poor financial condition. Just to undergo dialysis to keep the failed kidneys running, one has to pay Rs 3,000 including medication per dialysis. And this has to be done two to three times a week. Hence, the monthly expenses would go up to Rs. 40,000 a month, and it could exceed if the patient requires extra medication for any additional problems seen during the dialysis and post-dialysis period.

This amount is not affordable for most of the people of a least developed country like Nepal where a large section of life is spent struggling for just two square meals a day.

Balaram Subedi, 58, from Sano Shree Municipality of Bardiya has already spent Rs 1.7 million in the treatment of his better-half, Tulasi Subedi,52, a kidney failure patient, with the hope of keeping his life partner in company as long as possible.

In addition to this, Balaram is also fighting for monetary and other facilities for kidney patients from the State, which he says, is responsible to ensure medical care for the kidney failure patients as the treatment cost is unaffordable for many. He heads the Shree Kidney Victims Concerned Society that is striving for getting more state facilities including free medical services to the kidney failure patients. Balaram estimates that there are around 3,000 people across the country living with this problem.

Meanwhile, the Center in Bhaktapur, has been presently providing regular dialysis service to around 350 patients in six days in a week. But, emergency service is available for 24 hours. The state-run Centre is in its fourth year of establishment. Kidney failure patients receiving medical services at the Center, and their next to kin celebrated the moment the government announced free dialysis services on May 12 with a huge sigh of relief and joy. This was what they had long been clamouring for but were given cold shoulder from the governments so far.

We demand the implementation of free dialysis as soon as possible, Balaram said. Presently, kidney failure patients are getting free dialysis, a life-support treatment, just for two years.

Administrative officer at the Centre Harihar Pokhrel said they are awaiting the direction from the higher authorities to execute the government decision on free dialysis.

When asked whether she is aware of the government decision made in favour of patients like her, Binita said she came to know about it from other patients visiting the Center the following day. And that brought a smile to face, probably reflecting her hope for a longer life.

Center’s nephrologist Dr Kalpana Shrestha terms the May 12 decision ‘very welcoming’ as in her view this is huge relief for the patients and their families who have already become penniless as a result of the expensive treatment cost. Many have already lost their lives for lack of continued ability to meet the rising cost of dialysis and other medication. She also emphasized on free kidney transplant for the poor patients so that they could live a quality life, and not have to depend on regular dialysis.

The state could ensure free post–transplant medication for the patients to motivate patients to undergo kidney transplant as dialysis only helps the patient to just stay alive. But they cannot spend quality life and needs regular caretaking. Presently, kidney transplantation at the Centre costs Rs. 500,000, which could add up to 20 years of active life to a young person. However, with regular dialysis one can live for 10 years but a passive life.

The Center has already performed 84 kidney transplants surgery to date since the beginning of the current fiscal year. The latest amendment to the Organ Transplantation Act has made the kidney transplantation somehow easier as any relative of the patient can donate a kidney. Likewise, peer exchange and extraction of kidneys from the brain dead people have also been allowed.

Dr Shrestha however also sees the need of public awareness on kidney-related diseases and possible ways for its prevention and timely diagnosis. Diabetic and high blood pressure patients are the most vulnerable group to renal failure, according to her. RSS