In India, poor cancer patients rough it
In this makeshift cancer ward, there’s little risk of enduring bedsores, fussy nurses or tasteless hospital food.
In fact, on some days, the cancer patients living on the sidewalk in front of Mumbai’s Tata Memorial Hospital have no food at all.
At any given time, there’s a floating population of several hundred patients awaiting treatment, with barely a rupee to their name. Many have lived for months, even years, in makeshift tents that hug the hospital walls and gates.
They recline, surrounded by their medicine bottles, religious icons and tattered luggage, waiting for a hard-won appointment at this, one of India’s few state-of-the-art charitable hospitals. Their bed is a few square feet of hard pavement, their sheets a plastic tarp, their erratic food supply left to the gods and the beneficence of charities in a city that’s home to more than half of India’s 52 billionaires.
Cancer is only one of numerous serious illnesses the poor grapple with, but it’s among the more dramatic. Government-run Tata Memorial, which specializes in the disease, is a magnet for poor people suffering from its ravaging effects.
Jerbai Wadia Road and adjoining streets, a tangle of belching taxis, street vendors and garbage-lined gutters, is the only home Deepali Dahale has known for most of her 3 years.
She was born with a blood clot in her eye, said her mother, Meena Dahale, 25, as the rambunctious toddler grabbed at her mother’s bangles and the legs of passing pedestrians.
The clot soon turned cancerous, forcing the family to borrow $500 from relatives when Deepali was 4 months old to pay for an operation to remove her eye at a local clinic near Akola, their village in Maharashtra state.
The procedure was unsuccessful and the cancer spread. Soon Dahale’s husband turned on her, she said, blaming the illness on her genes. A little later, he banished her and their daughter, forcing them to find their way, broke and disillusioned, to this street in Mumbai, the state capital. The couple’s two older sons, considered little treasures in patriarchal village society, remained with him.
“My husband can’t stand having her in his sight,” Dahale, who married at 12, said as tears slid down her cheek. “She’s his daughter too. Even if he hates me, he should care about her.”
The toddler will need a second operation, but doctors haven’t yet told Dahale how much it will cost, she said, adding that she’ll have to petition local charities for the money. She hasn’t seen her two sons in a couple of years, a source of anguish.
Most of her neighbors in the row of crude shelters tell similar stories of crushing debt, superstition and family alienation after their diagnosis.
Anita Kamble, 29, racked by painful stomach cancer, considers her husband a rare exception. Farmer Sudhir Kamble, 38, has stood by her through a major operation in 2007, 11 subsequent rounds of chemotherapy, numerous injections and countless tablets.
Forced to leave their three children with grandparents back in the village after her diagnosis three years ago, the couple have lived here on the street ever since. Most of the husband’s days are spent lobbying various charitable trusts to open their checkbooks for her. “I’m extremely lucky,” she said.
“He tells me, ‘Whatever happens, I’m with you.’ I’m terrified what will happen to our children if I die, though.”
Rising cancer rates -- India is bracing for 27 million new cases annually by 2030, up from 12 million this year, partly a function of longer life expectancy -- have coincided with growing healthcare privatization. It has become so lucrative to treat rich patients and foreign medical tourists that even tractor and trucking companies have rushed to open specialized hospitals.
“The American system is being copied here, unfortunately,” said Dr. V. Shantha, chairwoman of the Cancer Institute in Chennai. “Now it’s all about ‘how much am I going to make from this patient.’ ”
That’s left the poor scrambling for care at the few remaining public or charitable trust hospitals, including Tata Memorial, which handles 43,000 new cancer patients annually, most for a nominal fee.
Kamlakant Tripathi, 49, sits along Jerbai Wadia Road beside his mother, Lal Devi, 70, who has liver cancer. Her yellow, listless body lies on the pavement, barely able to move. “We have no insurance,” he said. “Catastrophic illness is the biggest worry for an Indian family.”
Statistics bear that out, with healthcare the second-largest source of debt among India’s rural poor after dowry, wedding banquet and related social obligations, activists say.
By the time they arrive at Tata Memorial, most patients have spent everything on a parade of local doctors.
Shatrughan Tiwari, 42, minds his mother, Vidhya Devi T. Tiwari, 70, lying in fetal position on the sidewalk by the hospital, her withered body wreathed in a pink sari. They arrived two weeks ago to try to take care of the malignancy in her cheek. “Local doctors just squeeze all your money from you,” he said. “Now we need treatment as fast as possible, but there’s no money left, making it impossible.”
With so few public clinics in rural areas, many patients have little choice but to go to unlicensed practitioners or natural healers.
“There they often receive questionable injections,” said Avinash Kumar, lead health and education officer with Oxfam India. “There are many quacks.”
So many impoverished cancer patients descend on the Mumbai hospital that it can take weeks, even months, to get an appointment.
“Everyone gets treated,” said Sudhir Kamble, the husband of stomach cancer patient Anita Kamble. “But those with money get treated faster, which can make the difference between life and death.”
So the poor wait, adapting to life on the street. The hospital is in a low-lying area, and they huddle in ankle-deep water when it rains. Mosquitoes are ferocious. Sidewalk resident Pushpa Patil, 55, said her grandson, who has blood cancer, recently contracted malaria, which the hospital doesn’t cover, forcing her to cut into the 75 cents a day she earns helping a food vendor.
Passersby and charities occasionally donate old clothes, tarps and blankets, but there’s rarely enough to go around.
Periodically, city officials shoo away the cancer patients when neighbors complain, forcing them to retreat a few blocks with their meager belongings, only to return when the pressure is off.
“We don’t even have $2,” Shatrughan Tiwari said. “We’re caring for a sick person. What do they expect us to do?”
Along the way, old-timers who have been here for as long as a decade teach newcomers basic street skills, including where to defecate, where to find food and how to fill their dirt-caked containers with water meant for the hospital lawn.
A nearby entrepreneur charges 4 cents to use the toilet and 15 cents to bathe, but many can’t afford even that and opt instead to wake early and bathe in the gutter before the city rouses.
A charity group distributes meals every other day. When it doesn’t, some of the sidewalk dwellers make flat chapati bread on small gas stoves, risking the hospital’s ire if they’re too close to an ambulance. Others go without.
When appointment day finally arrives, most said, the doctors treat them with dignity. But money is always a concern. Most medicines and procedures are subsidized, but some aren’t. Paying fees involves petitioning a trust, such as the Shirdi Saibaba Trust, which requires a lot of paperwork, with a lot at stake.
“If I go for an injection tomorrow and they don’t pay, I’ll die,” Anita Kamble said.
The insecurity fuels depression and stress. “I get very tense about food, money and shelter,” Dahale, the mother of the 3-year-old, said. “But I have no choice and try to remain strong.”
Rom Sevar Sharma, 55, who’s been here a month with a malignancy in his neck and still hasn’t seen a doctor, has burned through $300. He’s in great pain and can barely speak. “Our money is exhausted,” he rasps. “If the doctor can . . . help, we’ll go ahead. If not, I’ll return to the village and await my fate.”
The journey from the village leaves many wide-eyed at Mumbai’s skyscrapers and frenetic pace. “We’re scared to cross the road with all the noise and bustle, but it sure is exciting,” Tiwari said.
“And there’s so much money around, not that any of it ever comes our way.”
Shanti Devi, 40, who has lived on the street intermittently for 11 years, recently brought her children to spend time with her, and they’re thrilled; it’s the first time her 13-year-old daughter has seen the ocean, which is at the edge of the city. Devi isn’t sure what type of cancer she has, but it has forced her to wear a colostomy bag, she said, lifting the edge of her sari.
Here by necessity, ripped from everything they know back home and scared of the future, many of the sick said they’ve discovered a kinship among the fellow cancer patients.
“I think I’ve made a different family out here on the street, of necessity,” Dahale said.
“I feel people will support me and my daughter in times of trouble. Ultimately, it’s up to destiny, the gods and the doctor how long we’ll be here.”
Anshul Rana in The Times’ New Delhi Bureau contributed to this report.