The fight against the disease is crippling but the lack of employment opportunities that follow it fell the spirit, say chronic kidney disease (CKD) patients, arguing that they may need sustained treatment but are otherwise able to manage their health condition and do a good day’s work.
At a recent meeting of Kidney Warriors, an online support group with over 1,800 members, jobs were the primary focus area for patients and their families.
A flourishing corporate career ended for Gurgaon-based Shachi Varshney, for instance, when her kidneys stopped functioning in 2009. Before the news could sink in, she was in a hospital attached to needles and machines pumping her blood in and out of her system.
She has been on dialysis since then — thrice a week without a miss.
“I have been through several interviews. Every time everything is fine till the time they know of my dialysis condition.
“Dialysis is an expensive process. Making money is a big factor in our condition, so yes the question of financial security certainly worries me,” said the 46-year-old, a qualified cost accountant who earlier worked in a global services firm for eight years.
The failing of an organ causes immense stress “physically and emotionally”, but what exacerbates their problems are the scarce job opportunities.
Patients on dialysis spend around Rs 25,000-Rs 30,000 a month. It takes at least “four hours” and is done thrice a week.
Dialysis, or haemodialysis, is a treatment for kidney failure which involves constant attention for the rest of a patient’s life. The machine takes on the role of what is essentially an artificial kidney, taking the patient’s blood out of the body through a filter and back into their veins.
“A few years back we couldn’t have even imagined a disabled person working in a office. Now, it is a reality. The same could be done to accommodate us also, Varshney said.
Admitting that it might sound like a “distant dream” at present, she said the government could take steps to take steps to extend night dialysis facilities to more places. “If that is done, we can get our day job done without any trouble, either for us or the employer,” she added.
Besides dialysis, the other option available is a kidney transplant that costs about Rs 6 lakh.
“Kidney disease can be worse than some of the cancers in terms of longevity of life and quality of life. A patient who undergoes kidney transplant has much better quality and quantity of life as compared to a dialysis patient, said Dr Salil Jain, director of the Department of Nephrology & Kidney Transplant, Fortis Memorial & Research Institute.
He said he had come across patients, particularly those in unorganised business workplaces, who had to leave their jobs because of the time they had to spend on dialysis.
Deepa Mehta, 36, got a kidney transplant in 2007.
“Everything was fine for a good 12 years after the transplant. I was working in top e-commerce companies. But then recently my reports showed high creatinine level. This means I have to go for dialysis now.
“They won’t give me leave. I had to leave my job. I am looking for new jobs but to no avail. This, when I am ready to work for less salary,” said a despairing Mehta.
When kidney function is significantly reduced (less than 5 to 10 per cent), renal replacement therapy becomes mandatory. This stage is called end stage kidney disease (ESKD).
According to Vasundhara Raghavan, a founder member of Kidney Warriors who donated her kidney to her younger son in 1991, society and the government must wake up the challenges faced by CKD patients. The treatment is expensive for a normal middle class family. If patients also lose their jobs, families are destroyed, she said.
“Inadequate income, lack of insurance, complexity of the disease and no outlet for redressal of personal problems adds to the emotional stress.
“With such a challenging disease, government and society have to first recognise the difficulties faced by kidney patients and find ways to improve their lives,” said the Dubai-based Raghavan.
The 2016 Global Burden of Disease reports an 87 per cent rise in the global burden of CKD and doubling of CKD deaths between 1990 and 2016.
Elaborating on the seriousness of the disease, P G Mukundan, a Kidney Warriors member whose daughter underwent a kidney transplant in 2014, said there can be a “cancer survivor” but not a “kidney survivor unless one has the transplant or continuously go for dialysis”.
The government, he stressed, must take steps to help people suffering from CKD.
“The government should have a rehabilitation programme for patients suffering from kidney disease. Second, medicines are very costly and should be exempted from GST. Our third suggestion is that the expenditure borne by the caregiver or patient should be given deduction from the total income of the patient or parent/spouse if the patient is unemployed,” he added.