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Silent disease devastating impoverishment

Patients at the end of their tether as chronic kidney disease takes a toll on families in Kerala

It is a sea of despair at the crowded nephrology OP at the Medical College Hospital, Thiuvananthapuram.

Twice-a-week maintenance haemodialysis has been a way of life for Binu, 42, of Karakonam for the past two years, after he was diagnosed with end-stage renal disease (ESRD). He is anaemic, has suspected cardiovascular disease now (a fallout of chronic kidney malady) and yet is compelled to work at construction sites to stave off hunger.

His wife Saritha choked up when she narrated the daily deprivations and financial stress her husband’s disease had imposed on the family.

“When we started his treatment at a private hospital, little did we know that it was just the beginning of a long innings. He needs three sessions a week but two is all we can afford, for each of which we have to find at least ₹1,500 plus more for emergency hospital admissions in between. We have exhausted the government’s RSBY and CHIS Plus benefits and are now dependent on Karunya funds for dialysis,” she says. All his hopes rest on finding a kidney from the State government’s Mrithasanjeevani cadaver organ donation programme.

Vinod, a 37-year-old driver, who is on dialysis for over four years, is another hopeful on the waiting list for a cadaver kidney.

Funding issues

“Through a charity at our church, we get dialysis free of charge but still we have to find ₹10,000 every month for medicines. Our only source of income now is a lottery shop that I run. My mother has agreed to give a kidney now and we are struggling to raise funds for a transplant,” says his wife Anu.

“We ‘lost’ a kidney last month when MCH got a deceased donor. It was ours … but they rejected him at the last minute,” she says .

In a room near the MCH, Ratheesh, 32, from Kottarakara — the one who got luckier than Vinod and managed to get the precious kidney — is resting after his transplant. He had been on dialysis for over seven years and forever on the kidney waiting list, before he got lucky. He starts to cry. “My elder brother has sacrificed so much to keep me alive. I hope I can now find work and support him. He must have borrowed heavily somewhere…,” he says.

He is entirely dependent on philanthropy to find the huge amounts he will require now every month to maintain his transplanted kidney.

“Their stories and profiles are all the same. These are all young men struck down by chronic kidney disease (CKD) at their most productive phase in life and the cost of keeping them alive has impoverished their families. Almost all of them are utilising the government aid under RSBY (₹30,000) and CHIS Plus (₹75,000) and are dependent on philanthropy to pull on further. The CKD burden is growing silently and dangerously overwhelming the health system, which is just waking up to the fact that the answer lies in strengthening primary prevention and control strategies,” says Noble Gracious, Assistant Professor of Nephrology and the regional coordinator of the Kerala Network for Organ Sharing.

Dialysis burden

The State’s ESRD burden is so high that a dialysis centre (there are 130 centres, an estimated 1,500 machines in private sector and 70-odd in public sector) has at least 100 to 120 people on waiting list for chronic maintenance haemodialysis.

At the MCH, Thiruvananthapuram, where 20 machines are running round-the-clock, through the year, there are 260 people waiting for a “slot”, which will fall vacant only if one dialysis patient dies or gets a transplant.

Earlier, they just died because dialysis facilities were scarce in the public sector. Today, facilities in the public sector have improved and there are charities and government assistance available for chronic disease care.

Yet, the impoverishment the disease wreaks on the families and the health system is immense. Last year, a Statewide study amongst 835 haemodialysis patients revealed that nine out of 10 households, which has one family member on haemodialysis, are spending 40 to 80% of the family’s non-food expenditure to continue dialysis.

Even though nearly 60% of these families had either government aid or some subsidy, they were experiencing catastrophic health expenditure and impoverishment. About 77% of the patients said they had to engage in distress financing to support dialysis.

The indirect costs of maintenance dialysis – medicine, travel, loss of wages, food, loss of wages of the companion – were substantial.

Another study, ‘Cost of haemodialysis in a public sector tertiary hospital of India, 2018’ , which assessed health system costs and out-of-pocket expenditure incurred by patients, puts the average cost incurred by the health system per dialysis at ₹4,148. The mean out-of-pocket expenditure for a patient per dialysis was ₹2,838.

In India, deaths due to renal failure constituted 2.9% of all deaths in 2010-13 among 15-69 year-olds, an increase from 2.1 % in 2001-03 ( Lancet Global Health, January 2017).

Diabetic nephropathy is the commonest cause of ESRD, fuelled by late referral of patients and inadequate awareness about the systemic damage caused by uncontrolled diabetes and hypertension.

But in Kerala, infectious causes of kidney disease as well as chronic kidney diseases of unknown aetiology are also equally high. The disease just progresses silently and about 48% of the ESRD cases present late, in Stage V, when survival depends on chronic dialysis or renal transplant.

Studies also report that only 10-20 % of ESRD patients can afford to go on long-term maintenance dialysis. Over 70% of those who start on dialysis are eventually forced to give it up as their financial hardship increases.

Kerala estimates

In the absence of a proper registry for CKD, the estimation of CKD or ESRD in the State is at the best a guesstimate.

But official estimates say that 23,500 patients are undergoing maintenance haemodialysis at present in Kerala , which means that about 635 per million population in the State are on dialysis.

On the basis of an estimated ESRD incidence of 152 per million population, the approximate number of new ESRD cases every year in the State is put at 5,600. But this is likely to be an underestimation of the actual burden in the community.

High prevalence of NCDs

The first-ever population-based study of a representative sample of 12,000 adults from across the State, conducted by the Achutha Menon Centre for Health Science Studies, the public health wing of the Sree Chitra Tirunal Institute for Health Science Studies, in 2017 reported that, on an average, one in three adults in Kerala over 18 years of age suffered from hypertension and one in five from diabetes.

Alarmingly, only 13% of those diagnosed with hypertension and just 16% of those diagnosed with diabetes managed to achieve adequate control over blood pressure and blood sugar respectively.

“There is no doubt that the high prevalence – 20 % of the Kerala population being diabetic and 30 % hypertensive – and poor control rates are fuelling this burden of ESRD and the catastrophic health expenditure on individuals and health system. It invariably says that our non-communicable diseases (NCD) care at the primary care-level is inadequate. Our strategies over the past six years have not resulted in good control rates because of poor follow-up and an erratic drug supply,” says K.R. Thankappan, a public health expert and former head of AMCHSS.

Faltering follow-up care

There is no denying that the State NCD control programme has not been able to check diabetes and hypertension adequately, says Bipin K. Gopal, State nodal officer for NCD.

There has been a huge inflow of patients with diabetes and hypertension into the public system after the government began dispensing NCD drugs for free. At present, 29 lakh people with diabetes are registered in the system at various primary health centres, with nearly 2,000-3,000 patients in every PHC. But this huge numbers has also resulted in poor follow-up and over crowding in NCD clinics.

“Overcrowded NCD clinics and erratic drug supply have indeed affected the quality of care delivered at the PHCs. We are trying to run more clinics and also figure out if our poor results are due to lack of adherence to drug protocols by patients as well as doctors,” says Dr. Gopal.

The India Hypertension Management Initiative being piloted in six districts in Kerala – where every patient is line-listed and followed up systematically – has shown better diabetes and hypertension control rates than the routine NCD control programme. The results are being evaluated now so that it can be scaled up across State.

Targeted screening?

Public health experts are now advocating a targeted screening programme to identify individuals at high risk of developing CKD and treating them early. Lack of reliable data on disease burden also needs to be resolved. “We need to develop a proper data system on CKD, on the lines of the United States Renal Data System, for analysing CKD prevalence, trends in mortality rate, and patient demographics,” Dr. Gracious adds.

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