Three families, who each lost a child in what they consider to be cases of malpractice, have started a movement to seek strict regulation of private hospitals. Vidya Krishnan reports

On July 30, 2011, at 3.26 p.m., 10-year-old Yash Arora was declared dead at Gurugram’s Medanta, the Medicity, one of India’s leading super-speciality hospitals. Yash had gone through six readmissions, two liver transplants, and numerous bouts of infections over nine months. The bill for his treatment amounted to ₹45 lakh.

The Aroras are from Rudrapur, a small town in Uttarakhand. They had brought their son to the hospital for liver treatment in March 2010. Yash’s father, Pankaj Arora, 42, claims that the doctors advised a liver transplant on the assumption that the patient’s family could afford it. “As soon as they discovered that we couldn’t, they started treating the patient differently,” he says. After Yash’s first liver transplant on April 1, 2011, Arora says the boy was discharged with an infection that caused the transplant to fail.

As a result, Yash had to be readmitted in a few days, on April 5. “He had his second liver transplant on April 20, after which the hospital put him in a ‘shared room’ with a patient suffering from drug-resistant tuberculosis,” says Arora. “This led to a lung infection,” adds his lawyer Piyush Chabra. According to Arora, the hospital put Yash in a ‘shared room’ only because they realised that the family could not afford the isolation ward, which is mandatory for immunocompromised patients who have received new organs.

Seeking closure

The Aroras were convinced that Yash was a victim of medical malpractice. But for three years they couldn’t do anything more than grieve for their only child. “I found the emotional strength to look at legal options only after the birth of my second child in 2014,” Arora says. Seeking closure, the family filed a Right to Information application with the All India Institute of Medical Sciences (AIIMS) on May 14, 2015. Arora’s first question was regarding the isolation protocol for liver transplant patients. The answer from AIIMS confirmed the family’s worst suspicion: “Absolute isolation is required.”

In response to a question about the level of care to be given to immunocompromised patients, AIIMS listed several precautions to be followed that included providing a separate room in the isolation ward for the patient; masks, gloves and eye protection for those entering the room; disinfecting medical instruments; and incinerating used needles and syringes.

The patient’s medical records and discharge certificate show that the doctors at Medanta initiated treatment for drug-resistant TB for Yash on July 6, 2011. Arora claims that the hospital did this without informing the family. “After my son died, I googled ‘ATT’. Only then did I realise that they had been treating him for TB. Yash caught TB only because the hospital put him in a room with a TB patient. This was a clear and absolute violation of medical protocol. This was much more than negligence. This was a death sentence,” says Arora.

Seven years after his son’s death, Arora’s life revolves around documents — dozens of files of medical records, paperwork tracking legal proceedings, newspaper clippings on medical malpractice, and treatment protocols set by the government. Despite his meticulous data-gathering, there hasn’t been much progress on the legal front.

Arora believes that the police never made a serious attempt to investigate the charges of medical negligence that he had made in his FIR against the hospital. Registering the FIR wasn’t easy either. It was only after directions from a district court that the police obliged. Subsequently, a medical board at the Postgraduate Institute of Medical Education and Research, Chandigarh, examined the medical records and dismissed the case without taking testimonies from the family. The family has appealed against the medical board’s decision in the Gurugram Sessions Court, where the case is currently pending.

Cases in the spotlight

Arora is not the only parent or family member running from pillar to post. In Delhi, a few other families have found that they share similar stories of grief and loss, which they attribute to medical malpractice, and which have drawn them together to form a small movement against medical malpractice in India.

Two such cases grabbed the headlines last year. During the dengue season (July to mid-September) in 2017, a girl named Adya Singh and a boy named Shaurya Parmar, both seven years old and unrelated, died in two state-of-the-art multi-specialty private hospitals: Fortis Memorial Research Institute in Gurugram and Medanta, respectively. Adya and Shaurya died of dengue.

Adya’s family was handed a ₹16 lakh bill by Fortis and Shaurya’s family was given a bill of ₹15 lakh. The National Pharmaceutical Pricing Authority (NPPA) analysed the medical bills and found that the hospital had markup drugs and consumables from 200% to 1,700% in some cases. Fortis denied allegations of overcharging. To a specific query posed by The Hindu on the justification for this markup, Fortis handed out seven press releases in response. It maintained that the profit margins are not illegal as they do not violate the Drug Price Control Orders. The hospital said: “It should be noted that our end price to the patient is very much in line with what other private hospitals in India charge. Looking at individual prices of any single item as a standalone takes the margin/ profit topic out of context.” It added: “All consumables are transparently reflected in records and charged as per actuals. A total of 750 pairs of gloves and 600 syringes during a 15-day stay is justifiable and acceptable when the patient is in an ICU setting.”

Adya’s father, Jayant Singh, and Shaurya’s father, Gopendra Parmar, reached out to the media in desperation. When they both made an appearance on television, Arora knew he had to meet them. “When I saw Jayant Singh and Gopendra Parmar on TV, I immediately realised that I could not let them make the mistakes that I did, such as wasting crucial time registering FIRs and retrieving medical records. We got in touch soon after that, and have been speaking to each other almost every day. My only goal now is to make sure that what happened to me should never happen to another family,” says Arora.

Over the last seven months, the conversations between the families has acquired a sense of purpose and urgency. Following Adya’s death in October last year, Singh created a Facebook page called Fight Against Healthcare Corruption. It has quickly become a platform where about 6,000 people across the country have connected with him with their own stories. “Everyone who got in touch has faced similar problems. They all want to know how my case got highlighted by the media, and what they should do. They want to join the fight for justice,” says Singh. These families are now demanding that an independent body be set up, with civil society representatives, to investigate cases of medical malpractice.

Amid mounting pressure from the affected families and the attendant media glare, Adya’s death led to the filing of a public interest litigation (PIL) in the Supreme Court. The PIL demands the regulation of India’s unregulated private health sector, from neighbourhood clinics to corporate hospitals, under Article 21 of the Constitution, which guarantees the right to life and personal liberty. On March 23, in response to the PIL, the apex court sent notices to the Medical Council of India (MCI), the Union Health Ministry, Haryana’s health department, the NPPA, and doctors at Fortis hospital. The PIL sought to turn the spotlight on “a larger systematic and structured loot of desperate patients... which is engineered by and between pharmaceutical companies, diagnostic labs, doctors and ultimately corporate hospitals.”

Singh has high hopes from the PIL. “This is not about my daughter any more. It’s no longer just a personal battle. The experience of most people attests to the fact that the police, the medical councils, and the government health departments work against the patients. The entire system is fighting against patients and working for pharmaceutical companies, insurance companies and private hospitals instead of regulating them,” he says.

Regulate the private health sector

In 1978, India signed the Alma Ata Declaration at the World Health Assembly, promising “Health for All” by 2000. Following up on that promise, with the aim of reaching as many patients as possible, the Indian government sought to increase the number of hospitals in the country by roping in the private sector. It allowed banks to fund privately owned hospitals. In 1983, Prathap Reddy set up Apollo hospital in Chennai, and thus was born India’s first corporate hospital chain.

“Back then, there was no debate on laws to regulate clinical establishments. This was partly because we did not see this level of medical negligence at that time. What we see now is actually medical malpractice, driven by the urge to make inordinate profits. It is a peculiarity of corporate hospitals,” says Amit Sengupta, convener of Jan Swasthya Abhiyan, a network of civil society organisations working towards securing the right to health for all.

The Central government has been pushing for the implementation of the Clinical Establishments (Registration and Regulation) Act, 2010, or the CE Act, which seeks to regulate all clinical establishments in India and set treatment guidelines for common diseases and conditions. The States have to ratify this law and implement it. While the law is in effect in Arunachal Pradesh, Himachal Pradesh, Mizoram, Sikkim and all the Union Territories (except the National Capital Region of Delhi) since March 1, 2012, most States haven’t made provisions to implement it. In Haryana, for instance, where Arora, Singh and Parmar lost their children, the Act has been ratified but not implemented. In Delhi, it has been neither ratified nor implemented, says R.K. Vats, Additional Secretary, Union Health Ministry.

Families who have alleged overcharging by private hospitals have found common cause with the government, which has for years failed to regulate the booming private sector health industry. The Health Ministry’s recent interest in regulating the sector ahead of an election year perhaps stems from the rollout of the National Health Protection Scheme (NHPS).

“When the NHPS is rolled out, most of our patients will be going to private hospitals,” says Vats. “We have told the State governments that while the Centre will give 60% of the funds for the NHPS, 40% will come from the States. It is in the interest of State governments to see where their money is going. There is no moral justification for this level of overcharging and overtreatment.” The Health Ministry is “seized of the matter” and private hospitals cannot avoid regulation for long, he adds.

Proving medical negligence in India is almost impossible. There is only one major success story from which families can take inspiration. That victory was in 2013. Kunal Saha, an American citizen and doctor of Indian origin, had taken Kolkata’s AMRI Hospitals to court. In a legal battle that lasted 15 years, Saha proved that his wife Anuradha, who died in 1998, was a victim of “gross dereliction of duty” by the doctors. The patient, herself a doctor, was suffering from toxic epidermal necrolysis. This is a rare and painful condition where the top layer of the skin detaches from the lower layer all over the body. The doctor treating her administered a higher-than-recommended dose of a steroid called Depomedrol. Saha was awarded a compensation of ₹11 crore, the highest amount in a medical negligence case in India.

A reminder but no deterrent

This case and the record compensation were hailed as a turning point in Indian medico-legal history. The Supreme Court judgment was deemed a “deterrent and a reminder” to the medical community. But five years later, it has become clear that the case hasn’t quite made an impact on the practices of corporate medical hospitals. At any rate, it has not served as a deterrent.

Saha says that he has “absolutely no doubt” that the lack of cooperation from the medical community is a major factor for the rising incidence of “medical negligence” in India. In 2001, he set up People for Better Treatment, an NGO that works with victims of medical negligence. “I managed to get justice for Anuradha’s wrongful death,” he says. “But it would have been impossible had I not been a doctor myself. Living in the U.S. was tremendously helpful in obtaining opinions from renowned medical experts. It is noteworthy that while I was able to obtain honest medical opinions from different countries, including the U.S., France, Austria and Canada, doctors in India, where most of my medical school classmates practice, were mostly unwilling to give their honest medical opinion in writing or testify before the court of law.”

In Indian law, a case of medical malpractice can be proved only by a committee of peers — by doctors who are members of various State Medical Councils. “Doctors do not go on record against other doctors, and especially against corporate hospitals. Therein lies the problem with proving medical negligence cases,” says Sengupta.

This is also borne out by the MCI’s own data on action taken against errant doctors: Since 2012, only 167 doctors have been temporarily blacklisted by the MCI, with the duration of the suspension ranging from three months to five years. Not one doctor has lost his or her medical license permanently. While information about the number of complaints received, disposed of, and pending is available in annual reports, data on action taken against doctors are not.

“The disciplinary action differs from case to case. The suspension of medical licence could range from one week to one month. In some cases it could even be three months,” says Girish Tyagi, Registrar of the Delhi Medical Council. Has any doctor permanently lost her license to practice medicine? “Not to my knowledge,” he says.

Uniting under one roof

Today, after months of phone calls and hundreds of WhatsApp exchanges, five of the 12 affected families will meet for the first time in New Delhi. They will hold a press briefing to announce the formal launch of their pressure group for sustained advocacy against medical negligence and malpratice. The group has decided to call itself the Campaign for Dignified and Affordable Healthcare.

The foundation for its formation was laid at a meeting on March 30, where the affected families, lawyers, activists, and journalists gathered in the office of the All India Drug Action Network (AIDAN) in Lajpat Nagar in Delhi. AIDAN is an independent network of many NGOs working for patient rights. It has become a coordinator of sorts for the families that want to pool their resources together for a common cause. “We have been overwhelmed by the number of families that have come forward after Jayant’s and Gopendra’s case became public,” says Malini Aisola, a health rights activist associated with AIDAN.

The immediate reason for the March 30 gathering was a press briefing on Medanta’s decision to refund ₹15 lakh to Parmar, following the intervention of the Health Ministry and relentless media scrutiny. Medanta refused to comment when asked for its response.

Every such meeting is an opportunity for the families to bond with each other, go into a huddle and come up with the best strategy to amplify their voice. As cameras were being set up, other families, new entrants to the pressure group, began briefing journalists about their own cases of medical malpractice. They had also brought their lawyers with them. “The families learn from each other’s experience, while activists and lawyers come up with the best strategy to highlight each case. The brainstorming sessions between the families, lawyers and activists gives all of them hope. More importantly, it gives them a strategy,” says Aisola.

It was at one such meeting that Singh told Arora that he should approach Haryana’s newly constituted district medical board to look at cases of negligence. “When Yash’s death was supposedly being investigated, back in 2015, no testimonies were taken from the families,” says Arora. “The medical board simply submitted half a page finding to the effect that there was no negligence, without even looking at the FIR.” He has decided to take Singh’s advice and continue his battle for patient rights, and it is no longer his battle alone.