Fatehpur/New Delhi: As I navigate winding muddy roads trying to find Julie’s home in the village of Budhwa in the Fatehpur district of Uttar Pradesh, Julie calls to make sure I have not lost my way. It is her third call, and it takes a few more before I finally locate her home. The nearest town is about 60 km from the village.

Julie Kumari, 13, was born in Budhwa; it was there that she suffered an acid attack when she was just around three years old. She was caught in the crossfire when her biological father, Manish, tried to throw the substance at her mother, as he was jealous that her mother had remarried. It left Julie with burns on her face, left arm, neck and chest.

Julie was not the only one who was attacked that night. Heera, her step father, lay asleep next to her on a charpai, a wooden frame bed strung with interlaced cords. Rani Devi, 31, Julie’s mother, was sleeping in another room. Manish entered the house with a container full of acid, and believing it was Rani Devi, threw the acid on the bed, where Julie and Heera lay asleep. Heera, 26, suffered 60% burns to his body and later died from an infection. Julie suffered 40% burns, affecting the majority of her upper body.

“Please come,” Rani Devi says, as she escorts me into their half-constructed house, with a makeshift roof and open windows. “Sit,” she says, pointing towards a charpai with a fresh white sheet, which I assume was arranged for my visit. The rest of the house has no furniture.

Julie’s house in Budhwa, Uttar Pradesh.

“I heard terrible screams,” says Rani Devi, recalling that night. “I woke up, came running and saw both Julie and Heera screaming. None of us knew what to do, we had no idea what had happened, Julie and Heera lay unconscious for 24 hours. Whoever touched them got burned--can you see this?” she says, displaying burn scars on her hands.

Rani Devi and Julie at their home in Fatehpur, Uttar Pradesh.

In such cases of acid attack, immediate first aid measures such as flushing the affected area with water can significantly reduce the depth of burns and minimise scarring in acid attack survivors, states an August 2016 paper titled ‘Health Care Management Of Acid Attack Survivors: A Review’, published in the International Journal of Medical and Pharmaceutical Research. It stresses on the importance of timely and appropriate first aid in preventing infection and reducing pain, which can greatly improve the overall outcome for survivors.

But what immediate aid did Julie receive? When was she taken to the hospital? More fundamentally, what happens if someone is attacked with acid in India’s remote villages? How does our healthcare system respond?

This is the third story in IndiaSpend’s series on acid attacks, which dives into the systemic health issues that acid attack survivors face to regain their vision and reconstruct their skin, and also explores health systems response, policy interventions and medical accessibility for survivors.

You can read the first part, on an acid attack survivor's journey to regain sight, here, and the second part on skin scarring here.

No primary healthcare for acid attack survivors

Julie’s was a case of classic delay in accessing first aid. “We didn’t realise what had happened and everyone in the village gathered in a queue to keep guessing as Julie and Heera laid unconscious,” Rani Devi says. “It was only on the next day that we realised it was acid and we called an ambulance, which arrived in half an hour,” she adds.

The ambulance took Julie and Heera to the Fatehpur district hospital in about an hour. “Nobody dared to touch them, their bodies stank,” Rani Devi tells me. “After some time, they gave some injection and glucose.” Julie and Heera were referred to the Kanpur district hospital on the same day.

“They should absolutely skip primary health centres (PHCs),” Anant Sinha, President, National Academy of Burns India (NABI), said when I asked him about access to primary healthcare and first aid for acid attack survivors. “Cases of acid attack need only one first aid and that is pouring a lot of water.”

“PHCs are poorly equipped to deal with such severe cases,” Sinha says, “The only thing they can do is to refer these patients, which further delays first aid. There is no primary healthcare for acid attack survivors at India’s PHCs.”

Further, the primary healthcare system in India suffers from significant shortfalls in personnel. Data from the National Medical Commission (2022) suggest that India has exceeded the World Health Organization (WHO) norm of one doctor per 1,000 population. Assuming an 80% availability of registered allopathic and AYUSH doctors, India’s doctor-population ratio stands at 1:834. However, the Rural Health Statistics 2020-21 (last available data) shows a shortfall of doctors and other medical workers in the primary healthcare system.

Akshay Kumar, Associate Professor in Emergency Medicine at the All India Institute of Medical Sciences (AIIMS), New Delhi, tells me, “Acid or thermal burn cases are much more complicated for any doctor, but rural India is filled with such so-called doctors. They get some diplomas and begin treating people, and it is such doctors that victims of burns in rural areas approach.”

A September 2007 paper, which Akshay Kumar co-authored, pointed to the problem of unqualified and unregulated rural medical practitioners. These practitioners lack formal medical education and training, and often use unsafe and ineffective treatments, leading to increased morbidity and mortality among rural populations, the paper noted.

Shobha Chamania, a burn surgeon at Choithram Hospital and Research Centre in Indore, tells me that moderate acid injuries can be healed almost completely just by pouring a lot of water immediately after the substance comes in contact with the skin. “Once we had an acid injured child,” she explains. “During a lab experiment, acid splashed onto his face. We washed the child for hours--of course, under anaesthesia. For weeks, we kept washing parts of his body. Today, there is no scar on his face, there is no scar on his eyes, there is no loss of vision; only the hand has a tiny bit of experience.”

Burn facilities at secondary facilities suffer inefficiency, lack of training

Burn unit at Fatehpur District Hospital, Uttar Pradesh

For a first hand look at how burn units operate, I went to Fatehpur district hospital, which is where Julie had been taken. Between 2007 and 2012, under the 11th Five-Year Plan, 118 trauma care facilities were identified in government hospitals and funds were released to 116 of these. Fatehpur district hospital is one of them.

“Where is the burn unit?” I asked the compounder in the hospital. He escorts me through the hospital corridor towards a locked room. He opens the lock and says, “Ye raha madam burn ward! [Here is the burn ward]”.

The room had six beds--three old and three apparently new--but there was no other equipment in sight. “What happens if a burn case comes?” I asked him. “It is very rare, madam,” he says.

“We have six beds in our burn ward; we treat emergency patients here,” Rakha Sachan, a nurse at the hospital, tells me.

Burn unit at Fatehpur District Hospital, Uttar Pradesh

Santosh Kumar, general surgeon at the hospital, tells me, “We mostly see cases of superficial deep burns here. We have seen cases with even 100% burns, but we only handle cases up to 50% burns. We refer the rest to higher facilities.”

He has never seen an acid attack case, he tells me. “If such a case comes in now, how prepared is the hospital?” I ask him. “If they are too severe, we refer them after first aid,” he says.

Fatehpur District Hospital, Uttar Pradesh

“The main issue is delayed access to proper treatment,” Chamania, who has worked with Acid Survivors Foundation in Bangladesh, tells me.

An advocacy manual titled "Burning Injustice", published by the Human Rights Law Network (HRLN) in August 2014, highlights the lack of access to healthcare for acid attack survivors in India. It discusses how survivors face a variety of physical and psychological challenges due to inadequate medical care, including delayed treatment and inadequate pain relief.

The National Academy of Burns-India has compiled data on the state of burn-care management in India. According to their assessment, there are 1,339 beds at 67 hospitals with dedicated burn-care units. Among these, 297 beds are in intensive care units meant exclusively for patients with critical burn injuries. More than half of these centres are privately operated. However, the academy acknowledges that their data are not comprehensive, and the exact number of treatment centres and patients is unknown.

Sinha, the president of the National Academy of Burns-India, tells me, “We have not updated our data for long; we should be revising it in August this year. However, the number of burn care units should now be around 100 in the country, this is my estimate.” The NABI website has a map labelling burn care units across the country.

We wrote to the Director General of Health Services, Atul Goel, the head of the National Health Mission in Uttar Pradesh, Aparna U., and to Principal Secretary of Uttar Pradesh’s Medical Health & Family Welfare Programme, Partha Sarathi Sen Sharma, requesting data on number of burn units, and burn cases each year in India. We will update the story when we receive a response.

As things stand, many burn patients do not receive treatment in specialised burn-care units within hospitals, and are instead treated in general wards. Experts say treating burns separately is important to prevent cross-contamination and infection among patients. “Burn patients require special care at multiple levels as the damage can vary in terms of area affected and the degree of burns,” said Akshay Kumar of AIIMS, New Delhi. “Burn patients should be kept in air-conditioned spaces to bring relief from further pain and irritation.”

Even when hospitals have the necessary infrastructure for burn care, the basic standards of care for acutely burned patients are often not met because they are not given priority by surgeons. This was explained in a 2010 paper titled ‘Training and burn care in India’ by Chamania, the burn surgeon, published in the Indian Journal of Plastic Surgery. “The dysfunctional nature of healthcare facilities is a problem in India,” she said.

According to another 2018 paper, by researchers from India, Australia and the UK, which investigated burn treatment and rehabilitation practices in India, there are several factors that hinder the treatment of burn injuries. These include a lack of awareness of burn first aid, insufficient medical personnel to treat burn injuries in hospitals, inadequate burn-care training for medical staff, poor hospital infrastructure, and inconsistency in treatment practices and rehabilitation services.

Affordability of treatment for acid injuries

“The ambulance charged Rs 2,000 to take Julie and Heera from Fatehpur to Kanpur district hospital,” Julie’s mother said.

Julie had been referred to Kanpur, where she was kept for a month. “Nobody came to see (the patients); the doctor visited once in three days,” she says. “Then they asked us to take the patient home. I mortgaged my house for Rs 25,000 and took them to a private hospital for treatment.” When no money was left, Rani Devi took Julie and Heera back home.

Dono ke shareer mein keede pad gaye,” [Their bodies got infected] she told me. “And Heera died,” she adds, her face taking on the pallor of remembered grief.

“In 2002,” says Chamania, while discussing reconstructive procedures and affordability of synthetic skin treatments, “I went to a conference on synthetic damage in Hong Kong. There was a guy who asked me, looking at the colour of my skin, ‘Where are you from?’ I told him I was from India. He said ‘I think you're wasting your time here.’ I asked why, and he said ‘It's very expensive for you to use it’.”

Chamania estimates that a synthetic skin, called synthetic dermes, measuring 10 by 10 centimetres costs Rs 80,000. In case of infection, the skin might get rejected, and may have to be replaced--which will cost another Rs 80,000.

“And this is only half the story--three weeks later, you have to put a skin graft on top, and it requires hospitalisation for weeks.” The per day cost for a hospital stay alone, without factoring in medication and other expenses, can be Rs 5,000 or more, she pointed out.

According to MOHAN Foundation, a non-governmental organisation working to promote organ donation, there are a total of 17 recorded skin banks in India, which Chamania says, are not enough to cover all burn cases in India.

According to the National Family Health Survey, 2019-21 (NFHS-V), half of Indian households do not generally seek healthcare from the public sector. This percentage is highest in Bihar (80%) and Uttar Pradesh (75%). The most commonly reported reason for not using government health facilities is the poor quality of care, the Survey showed.

According to a 2018 research paper, by Arun Kumar Singh of the King George Medical University in Lucknow, the average cost of treating minor burns or second-degree burns is approximately Rs 2,000 per percentage of the burn area on the total body surface. In the case of major burns, the cost can increase significantly to an average of Rs 6,000 per percentage of the burn area.

Most health insurance schemes do not offer coverage for burn or acid injuries, which are instead covered under “accidental death and disability”.

Burns are covered under the Pradhan Mantri Suraksha Bima Yojana for accidental death and disability, but acid burns are not a separate category.

The government provides financial assistance of Rs 1 lakh for acid attack victims from the Prime Minister’s National Relief Fund. However, this came into effect on October 8, 2016; those who suffered acid attacks before that date are not eligible for the grant.

Under the Ayushman Bharat Yojana, chemical burn patients with significant facial scarring can claim Rs 60,000. Patients with post-burn contracture surgeries can claim Rs 50,000. This excludes neck contracture (tightening of muscles) and contracture release with split thickness skin graft.

By the various estimates of the cost of treatments, grants are inadequate to address the needs of acid attack survivors.

“In India,” says Chamania when asked about the poor quality of care, “healthcare workers are paid peanuts and naturally, there is no motivation to work.”

‘Nobody knows’: India doesn’t keep records of burn cases

India has one of the largest incidences of burns, with an estimated 7 million burn injuries per year, the Ministry of Health and Family Welfare said in its 2021-22 Annual Report.

When asked whether India has an estimate of total burn cases per year, Chamania, who is also a member of the National Academy of Burns India (NABI), says “nobody knows”.

The health ministry recognises that globally, more people die due to burns injuries than due to malaria and tuberculosis. As per the data extrapolated from the information received from three major government hospitals in Delhi, approximately 140,000 people die of burn injuries annually. This works out to one death every four minutes due to burns.

The WHO has asked that countries fill a form to collect data on the number of people injured by burns for a global burn registry. “What happened was, the government said that this is our own national data and we would not like to share it with anyone,” Chamania says. “The form never asked anybody’s name or sex; they just wanted numbers.”

“There was a meeting--the WHO people came, Centres for Disease Control (CDC) from the United States came; then there was a meeting of 20-30 burn professionals from Delhi, and they said that the government will not permit sharing data of the country with anyone else and that we will have our own registry. Since then, it has not progressed.”

“At least for the last 10 years, the global registry has been maintained,” Chamania says. “Other countries are assessing; we are not, so we don’t know.”

A two-day workshop was held in November 2016, in collaboration with CDC Atlanta, to “finalise” the burn data registry format. Later that year, the ministry website updated its Burn Data Registry. Software was developed and, according to the ministry, will soon be implemented at the national level to collect, compile and analyse data related to burn Injuries in the country.

Under the National Programme for Prevention & Management of Trauma & Burn Injuries, a Burn Registry format is attached. However, it is not clear whether hospitals have stuck to submitting burn records since July 26, 2020, which is when the national database was last updated.

When we asked Santosh Kumar of Fatehpur District Hospital if they maintain a separate record for burn injuries, they said they have one register where they keep hospital records, including those for burns. Akshay Kumar at AIIMS Delhi said they fill a separate record form for burn patients.

We have emailed the health secretary requesting information about the national database for burns and will update the story when we receive a response.

Way forward

Experts believe that universal health coverage should extend to cover burn victims. “We should build an emergency care system,” said Akshay Kumar of AIIMS, New Delhi.

An Emergency Care System is a network of medical services and facilities designed to provide immediate medical attention to patients in critical situations. Building such a system involves creating a comprehensive infrastructure that includes ambulances, emergency medical services, and trauma centres.

While various experts have different suggestions, all agree that the problem is serious, and needs to be tackled seriously. The numbers bear them out.

The Supreme Court had, in 2013, banned over-the-counter sales of acid at retail outlets following an increase in the number of acid attacks, and ordered a compensation of Rs 3 lakh to be paid by state governments to each acid attack victim. Activists raise questions over the rampant sale of acid in markets and claim that the ban exists only on paper.

After a 17-year-old girl was attacked with acid while she was going to school in Delhi in December 2022, the Delhi Commission for Women chief Swati Maliwal said that acid is as easy to get as vegetables, despite a ban on its retail sale.

A total of 7 million burn injuries occur in India every year, according to health ministry data (a state-wise breakup of which is not available). Out of an estimated 1.4 lakh deaths, 91,000 are women, as per a June 2016 medical paper by researchers from the Tata Institute of Social Sciences.

These patients go through long periods of treatment and their families often struggle for money. Their situation isn’t helped by the fact that financial support from the government, even when available, is thin on the ground.

Julie had received Rs 5 lakh in compensation from the Uttar Pradesh government’s Laxmi Bai Mahila Evam Bal Samman Kosh, but she can access it only once she is 18 years old. Her treatment, meanwhile, is being funded by the Noida-based Chhanv Foundation, which works to rehabilitate acid attack survivors. In most cases of acid attacks, patients who go for treatment at tertiary facilities are supported by non-profit organisations.

Julie has never been to school, and is grown up for her age.

“What is for lunch today?” I asked Julie’s mother. “Julie cooked daal-chawal, she makes amazing food, please eat before you go,” she says.

They had told me that Julie doesn’t have new clothes. I offer to accompany her to buy new clothes.

“The city is too far from here,” she said.

(This article was supported by Health Systems Transformation Platform as a part of the HSTP–Health Journalism Fellowship 2022.)

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