For three generations Jalla Ramanappa’s family did not have a girl child. In a country where the premium on the male child knows no bounds, the Jalla family’s wish for a girl was unusual. But when his sister-in-law delivered the first baby girl followed by the arrival of his own bundle of joy, Gynana Sai, on October 10, 2015, celebrations erupted in the Jalla household.
“My brother had a son and a daughter and I and my wife yearned for a complete family like his. Our prayers were answered when Gynana was born, a year after my son Sai Teja’s birth,” says Ramanappa, a farm labourer-turned-salesman. He and his elder brother, Jalla Srinivasulu, a teacher in a private school, got married to two sisters, and live in a modest two-room house in a remote tiny village abutting the first railway station in the area that lent it the name RS Kothapalli in Chittoor district of Andhra Pradesh.
Elation, tragedy, relief Even as celebrations were on there came the tragic news that Gynana was down with jaundice. Doctors at the Desai Hospital in Madanapalle town 30 km away — where she was born — and family elders told Ramanappa and his wife Saraswathi that it is a usual occurrence in newborns, from which they recover in a few days. Days turned into months. There was no sign of improvement. The infant would cry endlessly with stomach pain and pass white stools as soon as her mother fed her milk.
Ramanappa soon quit his job in Bengaluru that fetched Rs.10,000 a month to assist his wife in taking care of Gynana. They carried the infant from one hospital to another, first in nearby Madanapalle, then Tirupati and finally Benguluru. It was at the M.S. Ramaiah Hospital in Bengaluru that her disease was diagnosed as biliary atresia, a rare life-threatening condition in which the bile ducts inside or outside the liver do not have normal openings. The hospital performed the “Kasai procedure” — a way to surgically bypass the ducts and prevent liver damage — but after spending Rs.5 lakh, much of it loan raised against their two-acre land, and five months’ stay in Bengaluru, the parents realised that the medical intervention did not work. She was referred to a Narayana Hrudalaya Hospitals, also in Bengaluru, where the doctors told the couple that liver transplantation was the only way out.
The estimate: Rs.15.60 lakh, plus more on post-operative care and follow-up, a huge amount for a salesman who had run into debts and was struggling to make ends meet. Caught between the impossible task of raising the money and having to see Gynana suffering, the brothers decided to approach a local court seeking mercy killing of the eight-month-old infant. “It was a hard decision but we were left with no option. We just could not see her suffer like that,” says Srinivasulu.
In their heart-wrenching petition in Telugu filed before the Junior Civil Judge, Thamballapalle on August 23, 2016, Ramanappa and Saraswathi narrate their struggle for existence with meagre earnings, the suffering of their daughter and her life-threatening disease; how their life revolved round hospitals for months together: “After Narayana Hrudayalaya gave the estimate of about Rs.30 lakh, including post-operative care for a long period, and a deadline of two months for the transplant to be carried out, we tried our best to pool resources. But it was nowhere near the target amount. We expected the government to come to our rescue but there is no hope so far. Governments change seeking votes from people every five years but they don’t even take care of basic necessities like health. We have tapped every source from officials to political leaders to non-governmental organisations. We realise it is beyond our means. On the other hand we are unable to see her suffering. Hence we request your permission for her mercy killing. We leave her at your feet to decide her fate.” The court turned down the petition for euthanasia, asking them to approach the district court or the High Court in Hyderabad.
The couple’s traumatic story and the way their petition drew media attention in Andhra Pradesh eventually forced Chief Minister N. Chandrababu Naidu to order State financial assistance for Gynana’s liver transplant. The Global Hospital in Chennai was picked for the operation. In the run-up to D-Day, August 6, Ramanappa maintained a stringent regimen of diet and exercise to lose 10 kg so as to be able to donate part of his liver to his child. The liver transplant was successful, and doctors say she is now on the road to recovery ahead of her first birthday on October 10.
Reddi Madhavi, a blood cancer patient, at her residence in Madanapalle town. Photo: Purnachandra Rao Madanapalle, an area of darkness Ramanappa is fortunate that his euthanasia petition jolted the state machinery into enabling a new lease of life for his daughter, but the same cannot be said of others in the arid Madanapalle division of Chittoor district which is witnessing a disturbing trend. At least two other parents in the last three months — and three more in the past — were pushed, under similar tragic circumstances, into moving the courts to seek administered death for their ailing children. The unusual string of petitions have collectively brought to the fore the region’s dry landscape-driven poverty, legal limitations in entertaining them, the choices before poor parents of terminally ill children, health-care delivery for the poor, the sad state of primary health care in remote rural areas, the dubious role of corporate hospitals, the lack of health insurance mechanisms and the State’s pathetic support system for vulnerable sections.
The Madanapalle revenue division forms the tail-end of western Chittoor, bordering the drought-prone Anantapur and Kadapa districts and Karnataka. A major portion of this largest administrative unit in Andhra Pradesh comprising 31 mandals (tehsils) is arid and covered by granite formations. There is 80 per cent deficit rainfall on average in the division from January to September, triggering drought year after year and deepening rural poverty, with some parts of Tamballapalle Assembly constituency almost presenting a desert-like spectacle. With no perennial river flowing and farmers depending only on rain and groundwater — a resource that keeps shrinking — large stretches of agriculture lands are left barren. There is no paddy or sugar cane cultivation, only vegetables and groundnut. Landless poor dominate the division while agriculture labourers turn construction workers for survival and keep migrating to Bengaluru and other cities for work. The rich landlords prefer to stay in Tirupati, Chennai and Bengaluru to do business and enable their children to pursue their studies and career. There is no proper health-care facility and people depend mostly on quacks or travel to Madanapalle town or Tirupati for better treatment.
The shrinking health cover A World Bank study in 2012 found that health spending was one of the important causes of poverty in India: “The country’s public financing for health care is less than one percent of the world’s total health expenditure, although it is home to over 16 per cent of the world’s population. Families meet almost 70 per cent of their health expenses out of their own pockets, placing considerable financial burden on poor households, often pushing them deeper into poverty.” Another study found that 35 per cent of the poor Indian households incurred “catastrophic health expenditure” — the spending on health that threatens the household’s capacity to maintain a basic standard of living. Add to this the declining expenditure on health as a percentage of gross domestic product over the years and we have a situation where the poor have increasingly shrinking access to health-care services.
Ironically the World Bank, in its report, bracketed Andhra Pradesh with a few other States where it noticed a significant increase in the population covered by government-sponsored health insurance schemes in the country in the five years preceding 2012. That was the time the then Chief Minister, the late Y.S. Rajasekhara Reddy, launched the Rajiv Aarogyasri Community Health Insurance Scheme — a scheme still being continued under the current Telugu Desam Party-led government albeit with a new name, Dr. NTR Vaidya Seva. Though the list of diseases covered is pretty long, some relating to cancer have been left out. Another drawback is the insurance cap of Rs.2.5 lakh. The Government of India’s redesigned Rashtriya Swasthya Bima Yojana, aimed at providing protection to Below Poverty Line households from financial liabilities arising out of health issues that involve hospitalisation, too touches the fringe of the problem with its limited scope.
B. Boddappa and Narsamma at their residence in Punganur town with a portrait of Mahesh, their son. The boy died after fighting blood cancer. Photo: Purnachandra Rao Pushed into death petitions Take the case of B. Boddappa, a barber by profession. Shifting from Dinnepalli village to Punganur town to be able to admit his four-year-old son Mahesh in a good school, he was shattered when he came to know that he suffered from blood cancer. From high fever to diagnosis of the dreaded disease, all it took for Mahesh was just three to four months. “We have gone through hell. We kept shuttling from hospitals in Madanapalle to Hyderabad to Bengaluru and then finally to Vellore. We ran up a debt of Rs.2 lakh for his treatment. I earn about Rs.250 working in a hair salon from morning till evening and my wife earns Rs.150 a day working as a labourer in the local grain market. From where can I raise the Rs.15 lakh cost estimated by Christian Medical College and Hospital (CMC) Vellore? I begged and borrowed and then simply gave up and approached the court as a last resort.”
In his petition before the Junior Civil Judge, Punganur, on August 8, 2016, he lucidly elucidates why he favoured death for his son: “It all started three months ago with his bleeding nose. We took him to a hospital in Tirupati. They conducted tests and referred him to Basavatarakam Indo-American Cancer Hospital and Research Centre in Hyderabad. After seeing the medical report they turned us away saying there is no treatment. Then we went to Indira Gandhi Institute of Child Health in Bengaluru where the doctors, after treating him for a month, asked us to go to CMC Vellore. It was there that it was confirmed as blood cancer requiring Rs.15 lakh for treatment. For a poor barber with meagre earning this is a tall order. I have already run into a debt of Rs.2 lakh. Please understand my helplessness and my mental agony. I pray with tears in my eyes to allow him to die.”
“Yes, for those who have not gone through the daily suffering, it appears cruel but what should we do in such a situation? We could neither see the pain of our dear one nor could we pool money even to make an attempt to save him,” says Bodappa’s wife, Narsamma. The local media, as in Gynana’s case, highlighted Mahesh’s plight but it came too late and the boy lost his battle with cancer in Bengaluru in August. At their two-room tenement in Punganur, the alphabet and numerals scribbled on the walls remind the grief-stricken couple of how poverty crippled their efforts to save the light of their lives.
R. Narayana of Madanapalle town, whose teenaged daughter Reddi Madhavi is virtually on the deathbed after suffering from blood cancer for a year now, faces a similar predicament. “I have run into a big debt, spending about Rs.6 lakh on her treatment in hospitals in Tirupati, Bengaluru and Hyderabad. Now a hospital in Bengaluru wants us to get Rs.6 lakh more for her treatment. I have two more children to take care. I and my wife work as labourers and together earn about Rs.500 a day and we just can’t imagine raising that kind of amount. Nor can we see Madhavi’s daily battle with cancer any more. Show mercy on us and allow us to take her life,” he said in his petition before the Second Additional District Judge, Madanapalle, on July 4, 2016.
Unlike other judges who turned away the petitioners with oral orders, the Madanapalle judge wrote down the reason for rejecting the plea. “This court has no jurisdiction to entertain this application and they are directed to approach proper forum/court along with supporting documents.” Madhavi, who was studying in Class XI when cancer struck, says she is determined to fight the disease and complete her studies if help comes through. But Narayana has run from pillar to post in vain.
“Petitions seeking mercy killing form only the tip of the iceberg. We know of about a hundred cases of patients suffering from serious diseases committing suicide simply because they were unable to bear medical expenditure. With its vast machinery, the government alone can come to their rescue,” says K. Dhanasekaran, who runs Rural Organisation for Poverty Eradication Services (ROPES) with wife Sreelatha. The Chittoor-based NGO has so far referred over 1,000 patients suffering from cancer and liver, kidney and lung ailments to hospitals in big cities.
Chittoor District Collector Siddharth Jain feigned ignorance over distressed parents approaching courts with death-seeking petitions. He said he would respond after getting inputs from the concerned departments. Even after a four-day wait he did not respond while two parent-petitioners said they had indeed approached him for financial assistance. The District Medical and Health Officer, Dr. Vijaya Gowri, who took charge recently, too appeared clueless. All that she had to say was this: “Since there is no legal sanction for euthanasia in India, there is no point in entertaining such petitions.”
But the nub of the matter is that these aren’t really petitions to let die. They are a plea for help to let live.
