Battling the Big C – Part I- From native villages to big city footpaths: cancer patients struggle to survive

While Akshay works as a liftman, his mother plans to join the society too. The cancer struck one son, but the other’s chances are inextricably linked to the cancer too. Babusa laments, “I wanted both my sons to study and become something. Not be a farmer like me living in fear of crop failure. But the cancer has changed our lives completely.”

There are thousands like Akshay in Mumbai: anxious relatives of cancer patients with meagre resources, picking up on odd jobs to support a relative battling the life-threatening disease.

Part II | No official registry, few donors: Platelet availability a hurdle

Part III | A million new cases every year, but not enough palliative care centres

Over 60,000 new cancer cases are recorded in Mumbai each year, and 80 per cent of the patients are from outside Mumbai and in fact Maharashtra, making the financial capital home for them for at least six months as the hospital rounds, tests, chemotherapy, radiation and surgeries proceed.

India has an estimated incidents of 10.57 lakh cancer cases per year, which means every 13th cancer case recorded globally is that of an Indian. Total cancer-related deaths in India in 2015 is 5,05,428.

Those belonging to middle or lower income groups are mute spectators to a speedy draining away of their humble savings. A lot of people belonging to such families told The Indian Express that their resources dwindle in the first six months of entering Mumbai itself, as living costs and the initial investigative blood tests, imaging tests, endoscopies and biopsies are rather expensive. By the time treatment begins, some families are reduced to living on footpaths, pinning their hopes on charity.

Bhola Potdar is a victim of such a life. Hailing from Katihar in Bihar, Potdar has been in Mumbai since 2011 for his wife Rita Devi’s treatment. A daily wage worker, Potdar’s daily earning of Rs 150 came to an abrupt halt once Rita was diagnosed with cancer. He arrived in Mumbai after doctors told him that Tata Memorial Hospital was his best bet, but Mumbai’s cost of living shocked him. “My son sends Rs 1,000 every month. He earns Rs 3,000,” Potdar says. The treatment will cost Potdar Rs 3 lakh, and to make some money, Potdar recently began to work at the Indian Cancer Society for a daily wage of Rs 100. “Three surgeries have been done. I am in debt. There is no money to even go back to our village,” he says. Potdar has visited Katihar only three times since 2011. Potdar currently lives in a Ghatkopar-based Sarvodaya trust’s dharamshala where he pays Rs 60 per day for himself and his wife.

Debt is a common thread running through the lives of the patients’ families. Akshay’s father Devba Babusa (40), like several farmers in Maharashtra, suffered a soyabean crop failure this year. Having spent Rs 30,000 on his elder son’s tests, he is now borrowing from friends to pay the Rs 90,000 that a single chemotherapy session will cost. “I can’t go back to Murtajapur to work. My wife is illiterate,” Babusa says.

Shalini Jatia, from Tata Memorial Hospital’s Social Welfare Department, explains that initial investigation to confirm diagnosis costs about Rs 10,000, and it is followed by treatment ranging between Rs 2 lakh to Rs 4 lakh that include chemotherapy, radiotherapy and surgical intervention for six months to a year.
Looking for alternative sources of income while living in Mumbai is also common. Bone cancer patient Jyoshna Pandey, from Bihar, who has been living at Sant Gadge Maharaj Dharamshala for over a year, says her father would spend the day with her at Tata Memorial Hospital and work as a watchman in a nearby building at night.

Her father spent Rs 1 lakh in various Patna hospitals for six months in 2014 for tests and surgeries that failed to diagnose that she had cancer. The father, mother, and daughter finally left her three siblings in Chhapra and came to Mumbai with Rs 10,000 in their bag. “That amount was spent in blood tests in the very first month,” she says. Back home, Jyoshna’s younger siblings are living with her grandfather who had to return to working in the farm at an old age just to feed the children. Her father, who earns Rs 10,000 per month as a watchman, makes the rounds of various NGOs during the day, trying to raise funds for her treatment. Since 2014, Jyoshna, who aspired to become a doctor, has not been able to step foot in the college. She has also had to have her right hand amputated to prevent chances of the cancer spreading from her arm to her upper torso.

According to a 2014 Lancet report, public expenditure on cancer care and treatment in India remains below $10 (Rs 667) per person, compared to $100 (Rs 6,670) per person in high-income countries. An extract from the report says, “Out-of-pocket payments, which account for more than three-quarters of cancer expenditures in India, are one of the greatest threats to patients and families.” For families such as Akshay’s and Jyoshna’s, these expenditures are debilitating.

The average cost in treating cancer, depending on the stage it has reached and the number of times a chemotherapy session is required, starts from a small sum of Rs 10,000 and runs into lakhs. A chemotheropy session, sometimes, cost Rs 90,000 or more. At Tata Memorial Hospital,where drugs are available at subsidised rates, the cost is half of private hospitals. As treatment duration prolongs, the cost rises. In private hospitals, the cost begins from Rs 10 lakhs for treatment.

Jatia adds: “NGOs usually give preference to patients who have no cash and are in dire need of immediate treatment. Patients have to personally visit trusts and ask for money.” Sometimes, a patient gets Rs 5,000, on other occasions he may get deposits of over a lakh in his personal account opened by Tata Memorial Hospital for its patients.

Around 80 to 100 cancer patients and their relatives make rounds of the Indian Cancer Society in Parel, located not far from Tata Memorial Hospital, looking for a temporary job and free meals. They are taught to make bags, stitch clothes, make prosthetic limbs, or work in a printing press.

Ranjana Pagare, medical social worker at the Indian Cancer Society, says there are several patients like Jyoshna whose weakness and poor immunity makes it difficult to do physical work. “Labourers cannot work the way they did before. Cancer not only drains their savings, it also takes away their stamina. They effectively have little options finding work,” Pagare tells The Indian Express.

Madhvi Tirkappa Karanji, 28, has been travelling from Haveri in Karnataka to Mumbai frequently ever since when she was diagnosed with bone cancer in 2002, when she was 15. Karanji abandoned her education after Std X. “I could not continue studying alongside the treatment,” she says. Now working at the Indian Cancer Society making prosthetic breasts, she earns Rs 100 a day.

“I had no qualification for any other job. The society was willing to train me and I have to just sit and work here. So I took up this job,” Karanji says. She is also given two free meals a day, key to building her immunity and an incentive available with no other job. Karanji lives at a rented flat in suburbs whenever in Mumbai during her regular visits to Tata Memorial Hospital for check-ups. “My entire family is in Karnataka. I live here by myself,” she says.

Social workers estimate that there may be over 100 NGOs and charitable trusts registered in Mumbai, but less than 50 work for needy cancer patients and their families. Even with a rapid growth in their numbers, the huge yearly inflow of patients to Mumbai makes it difficult to support each every one in need.
“Everyday we have 10 new patients requesting for a cot,” says Prashant Deshmukh, manager at the Sant Gadge Maharaj Dharamshala, an institution that has since 1986 been providing economical accommodation to cancer patients and their families.

At the dharamshala located in Dadar East, Deshmukh has seen in his decade-long experience that the disease can dismantle families financially and psychologically.

“After they realise that the treatment could continue for months, the patient’s mother usually stays back to look after the patient in hospital, while the father or brother will wander from one trust to another for money. These are families that often sell their land or borrow money before leaving their village,” Deshmukh says.

Sometimes family members are left behind, to be visited rarely in the next few months or years, only when finances permit and the disease is subdued.