How coronavirus crisis is holding India’s kidney patients to ransom

The grandmother of Arun Aklekar (name changed on request) suffers from a kidney failure and usually takes her dialysis treatments every few days. What might be considered a taxing routine anyway became worse when the Mumbai hospital they go to for her sessions shut down its dialysis unit after someone tested positive for Covid-19.

Similar closures and lack of transportation amid the pandemic, and the lockdown that came with it, have raised questions about the fate of those suffering from advanced kidney failure, an ailment which kills an estimated 225,000-275,000 every year in India, even without the problems that the coronavirus crisis has unleashed.

“A fair number of hospitals have shut their dialysis units,” says Vivekanand Jha, executive director at research body The George Institute for Global Health and president of the International Society of Nephrology. Units are being told to take dialysis machines and set them up elsewhere. This cannot be done overnight, as the creation of necessary facilities, including for treatment of the water used for dialysis, takes time, he explains.

Aklekar’s grandmother had also faced issues in transportation after the lockdown was announced. Luckily, the hospital was not too far.

An analysis of data from academic studies shows that most patients live more than 20 kilometres away from a dialysis centre. This varies in urban and rural areas. Nearly a quarter of the population can live as much as 100 kilometres away, noted a 2017 study ‘Renal failure deaths and their risk factors in India 2001–13: nationally representative estimates from the Million Death Study’, authored by Anna J Dare, Sze Hang Fu, Jayadeep Patra, Peter S Rodriguez, Prabhat Jha (Centre for Global Health Research, St Michael’s Hospital and Dalla Lana School of Public Health, University of Toronto); and J S Thakur (School of Public Health, Post Graduate Institute of Medical Education and Research).

“….almost 60 per cent of Indians live more than 50 km away from a health facility providing dialysis… (these are) …substantial distances given that patients in India mostly rely on haemodialysis and might require as many as five dialysis sessions per week,” it said.

Their problems are compounded during a lockdown, when transportation is scarce or unavailable. And even if available, it may require navigating roads shut down by authorities not as aware of such issues. An otherwise healthy and active kidney patient can die in days if dialysis is not made available.

Women tend to suffer more. They are far less likely than men to get treatment and persist with it, according to a study on kidney treatment in Andhra Pradesh titled ‘Utilization, costs, and outcomes for patients receiving publicly funded hemodialysis in India’, authored by Maaz Shaikh, Mark Woodward, Oommen John, Abhinav Bassi, Stephen Jan, Martin Gallagher, John Knight and Vivekanand Jha of the George Institute for Global Health along with Osmania Medical College and General Hospital’s Manisha Sahay and Gangadhar Taduri of the Nizam’s Institute of Medical Sciences published in the journal Kidney International (2018).

“Although men outnumber women among the dialysis population in almost all geographic regions, the over-representation of men (3:1) in this study was striking, suggesting that social determinants are influencing the disparities,” it said.

The study added that the cost of such treatments had a bearing on its availability to women, a factor which might only worsen with higher transport expenses.

“Even those females who entered… (treatment) …were more likely to cease treatment than males, perhaps because, in these cases, households are less willing to bear the out-of-pocket costs of ongoing medications,” it said.

Some states seem to show higher instances of deaths due to kidney disease, requiring greater intervention to prevent the same. The death rate per 100,000 population was 18 for the country, but for Tamil Nadu and Kerala it was 35 and 32, respectively, according to the 2017 ‘India: Health of the Nation’s States — The India State-Level Disease Burden Initiative’ report from the Indian Council of Medical Research, Public Health Foundation of India, and Institute for Health Metrics and Evaluation. Southern states rate highly on healthcare availability, but that might not be enough.

A 2019 editorial in the National Medical Journal of India noted that more than 90 per cent of dialysis patients’ families suffered catastrophic healthcare expenditure even in a relatively prosperous state like Kerala. This is defined as expenditure which is more than 40 per cent of monthly non-food expenses. Around 75 per cent had to resort to distress financing, involving borrowing and selling possessions.

The problems may well worsen during economic crises. The pandemic and the economic losses associated with it are, by some estimates, projected to have pushed India’s economic growth down to the lowest in 30 years.

Meanwhile, the government has issued revised guidelines to keep dialysis going, though patients are still said to be struggling.

Jha underlines the importance of not neglecting other healthcare issues while tackling coronavirus as has happened with those suffering from kidney ailments. “It is possible that more people will die because they couldn’t get treatment for existing diseases than perhaps by Covid-19,” Jha says.

Aklekar’s grandmother was able to go back to her regular hospital as it started functioning shortly afterwards. Others may not be so lucky.