Cancer in the Time
of COVID-19

Coronavirus lockdown adds to the woes
of India’s neglected cancer patients


By Elizabeth Soumya

A day before Abhishek Rai’s scheduled journey, the Indian Railways suspended 3,700 trains as part of the Janta (voluntary) curfew, a one-day precursor to the country’s’s 21-day COVID-19 lockdown.

Since then, 29-year-old Rai, who works in a power plant in the city of Meerut in the northern state of Uttar Pradesh, has tried desperately to get back home to Patna City in eastern Bihar state. “This is a very big emergency for me,” he says, his voice quivering.

“I went to the sub inspector’s office.”

“I went to the District Magistrate’s office.”

“I emailed the Chief Minister of Bihar; I emailed the Chief Minister of Uttar Pradesh”

 “No one supported me, no one has helped.”

“Taxis are unwilling to come that far.”

Rai is trying to get home to be beside his dying mother. Her arduous cancer treatment, which included a surgery and being admitted to multiple hospitals since November, ended when doctors at Patna’s Paras HMRI hospital conceded that there was nothing more that could be done. Rai’s elderly father and young sister brought her home for her final days. Rai says she is too frail to speak over the phone and can hardly open her eyes.

Twenty-two- year-old Lavlesh Vishwakarma, an M.Sc. student, is a caregiver to his 57-year-old father, Rajendra Prasad, who was diagnosed with cancer of the neck. Like many in rural India, Vishwakarma’s dad dismissed his symptoms until they became unbearable. He couldn’t swallow as much as a small sip of water without excruciating pain. The disease had progressed to an advanced stage, leaving him unable to continue his low paying job as a woodcutter.

Vishwakarma and his father travelled from his village in Bandla area of Uttar Pradesh to Delhi for the cancer treatment. A few days ago, his father was discharged from Safdarjung Hospital, one of India’s largest government hospitals, with a reference for radiotherapy at the All India Institute of Medical Sciences (AIIMS). He soon discovered that AIIMS was not taking in any new patients. He tried visiting two other cancer hospitals in the city only to be turned away. Back at Safdarjung, the outpatient department was shut, leaving him stuck.

Pankaj Verma’s family had finally received a date for a long awaited surgery - for the removal of an eye tumour in his two-year-old nephew. With all domestic flights suspended after March 24, the family’s flight on the 25th was cancelled and it meant they couldn’t make it to Sankara Eye Hospital in Chennai, 1,800 kilometres away from Mau District in Uttar Pradesh. “At least if they gave us permission for road travel, we could have driven to Chennai. The doctors were at first ready to do the surgery if we were able to get there somehow. But a few days ago, they told us they are not going to the hospital as well,” he says. While they can hold off the procedure for a few days, doctors have warned that the cancer could spread to the other eye if the surgery is delayed for too long.

Indian woman Neelu Kushraha, wearing a mask next to her cancer patient husband who lies on a pavement outside the Tata Memorial Hospital during a countrywide lockdown as a precautionary measure against the new coronavirus in Mumbai, India, Monday, March 30, 2020. (AP Photo/Rafiq Maqbool)

Indian woman Neelu Kushraha, wearing a mask next to her cancer patient husband who lies on a pavement outside the Tata Memorial Hospital during a countrywide lockdown as a precautionary measure against the new coronavirus in Mumbai, India, Monday, March 30, 2020. (AP Photo/Rafiq Maqbool)

Disrupting Cancer Care

India’s abrupt COVID-19 lockdown, announced with a miserly four-hour notice, has turned into a tragedy of its own, with unending hardships for marginalised populations. Along with migrant workers, daily wagers and urban poor, patients of critical illnesses have been left in the lurch. And no one has been hit as hard as those both poor and ailing.

Thousands of cancer patients are among those who are affected. According to the WHO figures, India sees 1.16 million new cancer cases each year. According to the Indian Council of Medical Research data, cancer deaths have more than doubled in India from 382,000 in 1990 to 813,000 in 2016.

These patients are impacted from a lack of access to transportation – many have been stranded in the middle of their treatments with pain and discomfort, those who completed their treatments didn’t have the means to return to their homes, access to medicines has become difficult with pharmacies unable to stock up on critical medicines. With outpatient departments of hospitals shut, patients are anxious about their treatments and surgeries that have been scheduled after long waiting periods, and are now being postponed. They are afraid of the impact of the delay of treatment on the progression of their cancers. And they face a new looming danger, the novel coronavirus, to which they are more vulnerable with their immune systems being weak due to cancer, anti-cancer drugs and chemotherapy.

An Indian migrant labourer's family is silhouetted as they make the journey to their village by foot, following a lockdown amid concern over spread of coronavirus in New Delhi, India, Saturday, March 28, 2020. (AP Photo/Altaf Qadri)

An Indian migrant labourer's family is silhouetted as they make the journey to their village by foot, following a lockdown amid concern over spread of coronavirus in New Delhi, India, Saturday, March 28, 2020. (AP Photo/Altaf Qadri)

‘Cancer Migration’

Cancer compels you to move, to wander from one hospital to another, from villages and small towns to cities. Rai travelled with his mother to Bokaro Steel City in the state of Jharkhand for a surgery and then to hospitals in Patna. Vishwakarma has travelled with his dad to Allahabad in Uttar Pradesh, then with a cancer diagnosis report in his hands he went back home to his village. Still hiding the diagnosis from his mother, “because she won’t be able to take it,” the son and the father made an overnight journey to Delhi. Verma’s family has made the long journey to Chennai from Uttar Pradesh multiple times already for his nephew’s treatment.

As rural poor migrate to urban areas in search of jobs and better opportunities, cancer patients and their families are compelled out of their homes to make long seasonal journeys to crowded, noisy cities seeking treatment. While 70 percent of India’s population lives in rural India, 95 percent of cancer treatment centres are in urban areas.

It is these poor cancer patients who often travel thousands of kilometres to access tertiary healthcare centres that have been at the receiving end of the COVID-19 lockdown.

Vishaka, a 13-year-old girl with cancer of the thigh bone, was seen walking from Delhi to her home in Pushkar, Rajasthan state, after the lockdown, when all interstate transport was stopped. Dr. Shah Alam Khan, an orthopaedic oncologist from AIIMS recognised her from a news report as his patient who he had operated on in December.

The footpaths outside AIIMS, one of India’s top government hospitals, serve as make-shift homes by hundreds of cancer patients, who the doctor calls “cancer refugees.” “These are homeless people suffering from cancer, who do not have the means,” says Dr. Khan.

“Cancer treatment can take about a year with chemotherapy, surgery and again chemotherapy. After a few days of staying in paid accommodations, money is exhausted, patients come to the streets - on the foot paths,” he explains.  

During the lockdown, there have been reports of these patients struggling for food and made to clear their makeshift pavement homes by the police.

“I am surprised that in a short period they have disappeared; I wonder where they have gone; (an) easy explanation is they could have given up their treatments and gone back and that is so disturbing. Some must have been accommodated in dharamshalas, shelters by NGOs,” he adds.

While AIIMS provides shelter beds for 400 patients, there are thousands of such patients, many from the states of Bihar, Uttar Pradesh and West Bengal,  just the number of patients visiting its OPD on a regular day is as high as 10,000.

Dr. Pramesh C.S., Director at Tata Memorial Hospital in Mumbai, says one of the reasons for the influx of patients is that smaller towns do not have the expertise. “Cancer care in India is not as widely available as it should be, especially when it comes to specialised cancer treatment like blood cancers, tumours - they need infrastructure as well as man power. Cancers such as of the pancreas, liver, oesophagus require high level of expertise and that is not widely available across the length and breadth of India.”

The scenes outside Tata Memorial, one of Asia’s biggest cancer hospitals that sees over 2,000 patients a day, are similar to AIIMS. Exhortations to stay inside their homes and not step out were irrelevant to migrant patients already on the streets.

Being homeless, with no access to clean accommodation, safe drinking water, sanitisers and even basic food, puts these immunocompromised patients further at risk during a pandemic, says Anil Nair from St. Jude India Childcare, Mumbai, a charity that provides accommodation, food and transport to children with cancers and their families who have travelled to cities for treatment.

While St. Jude helps over 4,000 children in a year in nine cities, 32,000 more children and their families who come to metros for cancer treatment have nowhere to go.

Migrant daily wage laborers crowd a bus as they travel to their respective hometowns following a lockdown amid concern over spread of coronavirus in New Delhi, India, Friday, March 27, 2020. (AP Photo/Manish Swarup)

Migrant daily wage laborers crowd a bus as they travel to their respective hometowns following a lockdown amid concern over spread of coronavirus in New Delhi, India, Friday, March 27, 2020. (AP Photo/Manish Swarup)

More Hurdles for Patients

The disruption of long-distance trains has a huge impact on cancer patients accessing care, says Nair. “Many patients come from interiors of Jharkhand, Chattisgarh and Uttar Pradesh and there is no way they can make it to Vellore, Bombay or Delhi (where super-speciality, good hospitals are).”

To begin with, not everyone with cancer is diagnosed. “Even detecting cancer requires blood work, when there is restriction to travel, a lot of people may not even be diagnosed,” he says. Many in rural India do not realise they have cancer until much later when it has already become incurable or are not able to navigate through the trials of their treatment. Both through the lockdown and the pandemic we should make sure that cancer patients don’t feel isolated, reminds Nair.

Any hurdles created by the lockdown for these patients, whose limits are already tested by their circumstances, means unnecessary suffering. Some will abandon their treatments, turning their disease fatal.

 The financial burdens of cancer can also be debilitating for families – the lockdown as well as the stress of the COVID-19 pandemic on the economy will have both immediate and long-term impact on those with serious illnesses. Patients often sell off whatever valuables they have, exhaust their finances to meet not just out of pocket medical expenses, but also logistical expenses of staying in big cities. Being away from their home for months and the long tenure of treatment already mean loss of their jobs and incomes.

“In spite of all this effort, for some there may still be no light at the end of the tunnel,” says Nair.

Dr. Khan is sceptical about the closing down of tertiary hospitals. He says what we need is more personal protective equipment (PPE). “At the end of the day, when the statistics are done, we will know how many COVID-19 patients died in this period. (But) will we know how many have died of cancer, tuberculosis or childhood diarrhoea due to lack of access and closing down of tertiary hospitals?” he asks. 

In Meerut, Rai was finally able to contact a local lawmaker, Rajendra Aggarwal, who helped him with a permission letter to travel out of the state. But it was already too late; Rai’s mother passed away the very next day on April 3.

Part of his message to the District Magistrate a few days ago was: “Sir, my mother is suffering from cancer last stage. She is in Patna and waiting for me.”

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Here’s a list* of some non-profit groups helping cancer patients in need:

Pallium India
Kerala

Cansupport
Delhi
(helplines: Delhi +91 11 41010539, Amritsar: +91 9501887956, Bathinda: +919315905178 Meerut: +91 8826576722)

Cancer Patients Aid Association
Indian Cancer Society
Cope with Cancer

NGOs for Children with Cancer

St Judes
Access Life
Cuddles for Cancer
Cankids
Hope Child Cancer Care

Disclaimer: The inclusion of above non-profit groups does amount to StoriesAsia endorsing them.