From the day Fayza Ansari, 14, was diagnosed with leukaemia, her life followed a tragic arc – turned away by hospitals, her sobbing pleas ignored, her parents desperately trying to find a bed for her.
“If beds aren’t available, what must poor patients do? Die?” These were Fayza’s last words, captured on a video taken by her father to gain some attention. The images of the frail and wild-eyed teenager, who by now was bleeding from her nose and ears, finally reached the top government hospital in the Indian capital, Delhi, where she was belatedly admitted on 5 December.
Fayza died a few hours later. Her story captures the experience of far too many poor Indians, failed by a healthcare system that is free but overloaded and often heartless.
A doctor in casualty shouted in exasperation when Fayza and her parents kept pleading with him to give her a bed. Fayza’s mother, Razia, recalls his words: “Where do you poor all keep coming from? How can we cope with you all?”
In the days preceding Fayza’s death, Razia and her husband, Zamir Ahmed, allege that three government hospitals refused her treatment on the grounds of medicines, beds or equipment being unavailable. “My mum brings me here every day and is exhausted but you can’t take pity on her?” Fayza angrily asked doctors in the casualty wing of one hospital.
The experience is seared in Razia’s memory. “My daughter was strong-minded, she was desperate to get well and study to become an engineer. She was the smartest of my five daughters,” she says.
Razia alleges that the Delhi State Cancer Institute, Safdarjung hospital and AIIMS, the hospital where she died, initially refused to take her in. “In her last days, my daughter screamed in pain outside emergency rooms, begging anyone in a white coat to help her,” says Razia.
***
The problem Fayza’s family encountered has a solution – but it is defective. More than 60 private hospitals, which were given land at highly subsidised rates, are obliged to dedicate 10% of beds and 25% of outpatient appointments to low-income patients, free of charge. If free private treatment supplemented government hospitals, it was reasoned, this would help address the monumental inequality experienced by Indians when they fall sick.
But this obligation was not honoured for years by private hospitals. They turned away poor Indians, in favour, it is alleged, of paying patients. A board that is meant to be displayed prominently at hospital entrances to publicise the policy was reportedly often missing.
Until a Delhi high court lawyer and health activist, Ashok Agarwal, began fighting for the policy to be enforced 20 years ago, there was very little awareness of it. Agarwal began working to expose the hospitals’ dereliction of duty when he saw a man dying of tuberculosis on the street. It was the man’s quiet acceptance that nothing could be done that galvanised Agarwal.
His name is now well known, and when a well-wisher saw Fayza’s parents frantic in casualty, they advised them to make a video and send it to Agarwal, who routinely takes up such cases. He released the video to the media, and bombarded officials in private hospitals. When staff at the AIIMS hospital realised Fayza had been turned away, they asked Agarwal to send her there to be admitted.
Sitting in his small chamber in the labyrinthine complex of the Delhi high court, Agarwal describes Fayza’s case, while tragic, as mercifully less common than it used to be. Thanks to his petitions and the court rulings he brought about, a government liaison officer is posted in every private hospital to ensure they do not turn the poor away. Boards are prominently displayed now at hospital entrances, often with his number as a helpline.
But the lapses continue, forcing the supreme court to intervene in 2018 with a ruling ordering private hospitals to honour their obligations, on pain of massive fines. “The situation has improved even more since the 2018 ruling,” says Agarwal. “It’s not perfect but it’s better. But it’s taken two decades, and even now the price is eternal vigilance to make sure they fulfil their responsibility.”
He feels tremendous satisfaction when he sees the poor being admitted to comfortable private hospitals and receiving the same treatment as the wealthy. “They can’t believe their surroundings. They are thrilled when the nurses address them as ‘sir’.
“When they go home to their villages, they show off the bill that they have not had to pay, to boast about the huge amount spent on their treatment.”
Agarwal wishes Fayza’s story had ended as happily. After her death, he went to meet her parents and four sisters to pay his condolences.
***
The last few days of Fayza’s life haunt her family. In casualty, she writhed in pain on the floor. “She shrieked at the doctors, begging them to treat her anywhere – on the floor, the corridor, the reception,” says her mother.
One doctor turned his head. “Stop this natak [melodrama]. Pick her up and take her away,” he said to the family.
Delhi’s health ministry has ordered an inquiry into why Fayza was denied treatment by three government hospitals.
