World Diabetes Day

No insulin for girls: Diabetes kills more girls than boys in India

Doctors document several instances where families stop giving diabetic girls and women their daily medicine.

More than two decades ago Dr Sharad Pendsey met an eight-year-old girl he remembers as Sudha at his Nagpur clinic. Sudha had type 1 diabetes and Pendsey is a diabetologist. Sudha’s father, a daily-wage labourer, repeatedly asked Pendsey whether she would die without insulin injections. The doctor confirmed that she would. A month after her diagnosis, Sudha died. Her parents had stopped giving her insulin.

“We treated Sudha and counseled the parents,” said Pendsey. “They had understood very clearly that the girl needed insulin to live.”

Pendsey said that Sudha’s death was entirely preventable. “She had two brothers and spending money on her treatment meant taking resources away from the boys,” he elaborated. “On the other hand, if one of the boys had been diagnosed with type 1, the parents wouldn’t have been so cruel.”

Shortly after Sudha’s death, another one of Pendsey’s patients died because her parents stopped insulin. He treated Kalpana, who had been diagnosed with type 1 diabetes at the age of two, for four years. “She died on the stairs that lead up to my clinic,” he said. Kalpana came from a low-income family on the outskirts of Nagpur and her parents had little education. They had decided to treat her with alternative medicine.

In the many years after these two deaths, Pendsey has continued to see such cases. Anecdotal evidence from doctors and health activists and data from some hospitals suggests that across the country many young girls with type 1 diabetes are meeting the same fate as Sudha and Kalpana.

Why the body needs insulin

The hormone insulin is secreted by the pancreas, a gland that sits behind the stomach, and keeps blood sugar levels stable. In type 1 diabetes, the body produces little or no insulin, which throws the body’s sugar levels out of gear and fatally so. With regular monitoring, a balanced diet, exercise and daily insulin injections diabetics, and even diabetic children, have fair chances of long and healthy lives.

However, without insulin to process sugar in the blood, the body starts using fat for metabolism instead of glucose. This can cause diabetic ketoacidosis where free fatty acids are released from adipose tissue, turning blood acidic. This can send a diabetic into coma and possibly lead to death.

Missing girls and women


Bharti Hospital is located in Karnal, Haryana, a state that has the poorest sex ratio in the country. Data collected from the hospital’s outpatient records across two years show that an equal number of boys and girls under the age of 15 are treated for type 1 diabetes. However, among patients aged between 15 and 30, for every 100 boys being treated by the hospital, there are only 46 girls.

“The deaths aren’t even registered,” said Dr Sanjay Kalra, an endocrinologist at the hospital who conducted the study along with his colleagues.

Like Kalpana in Nagpur, some of these missing girls may have been taken to doctors practising alternative medicine, even though homeopathy and ayurveda cannot manage type 1 diabetes.

“In any society it is not acceptable to want to kill your child,” said Kalra who has been treating diabetes for 17 years. “But in India, it is acceptable to say, ‘I don’t believe in allopathy’. So, the parents decide to go to a doctor practicing alternative medicine and stop insulin.”

Kalra feels that many parents take the decision to stop insulin knowing full well that the results are going to be bad. “When the girl does get sick, the parents know that she will recover within a few hours of bringing her to the hospital, so they wait for three or four days and bring her in when she is about to go,” he said.

Girls get short shrift not only in treatment for diabetes but when they suffer from any serious or chronic ailments. A study conducted in 2012 by the doctors at the pediatric oncology department of Tata Memorial Hospital found that girl children affected by cancer were more likely to be taken off treatments by their parents. Only 25% of children being treated for cancer at the hospital were girls.

The cost of treatment

Shuchy Chugh is a diabetes education specialist in Bangalore. She was herself diagnosed with type 1 diabetes at the age of 11. Chugh’s parents have supported her through her disease and treatment and Chugh knows that she is fortunate. As a diabetes counsellor she has seen unexpected deaths among girls with type 1 diabetes.

Chugh recalls the story of a girl of about six and her two-year-old brother, both with type 1 diabetes. “The parents would check the brother’s sugar level four or five times a day, but the girl would be checked once or so,” she said. “A few months after having met them, I found out that the girl had died. They told us she had diarrhoea.”

In another case, a 19-year-old girl died shortly after she had been diagnosed with type 1 diabetes. “In the initial medical reports and even during our counselling sessions, we found nothing particularly wrong. When we asked how she had died, they said, ‘one day, she just died’. No child would have just died,” said Chugh.

According to data from the Sanjay Gandhi Post Graduate Institute of Medical Sciences, the average annual cost of managing type I diabetes is Rs 27,000. “How can families whose annual income is about Rs. 20,000 afford the treatment?” asked Pendsey. “That’s one of the reasons why children with diabetes are perceived as a burden, particularly when it is a girl child. When it’s a boy, parents will find a way to pay and manage the disease.”

Diabetes on the marriage mart

Poonam Umale in Nagpur was diagnosed with type 1 diabetes when she was 13. “My father was a plumber, so it was very hard,” she said. “There was no fixed income and every month we would worry about where we would find the money to buy insulin.”

Umale got some assistance from a government hospital, and later from a trust set up by Pendsey, that helps families who cannot afford insulin and other medical expenses.

Twenty nine-year-old Umale, who grew up in what she calls a jhopadpatti, has a postgraduate degree and a business of her own. But despite that, she is not a favorite in her family because her disease hinders her marriage prospects.

“I am very upfront about the fact that I have type 1 diabetes,” said Umale. “Many families come to see me, they like me, but when I tell them about my illness, they never respond. But I think I am lucky, whoever marries me will love me for who I am.”

Not all diabetic women of seeking matrimonial alliances reveal their condition and sometimes this has dire consequences.

At Bharti Hospital, doctors conducted posthumous caesarean operations on two young women, on separate occasions. One, who had kept her diabetes secret from her husband and in-laws, would take insulin at work and go without it during holidays and other occasions. An article published in medical journal Diabetologia shows that she was brought into the hospital breathing heavily and died two days before she was to have an elective caesarean. Analysis revealed that she had not taken diabetes medication over the previous 24 hours.

In the second case documented, the woman was getting sporadic treatment and had not seen any physician for diabetes care during pregnancy. She died and when her husband was informed of her condition, he said he was not aware that his wife had diabetes. In both cases, the babies survived.

Chugh stresses the importance of positive messages around diabetes. “It is a disease that can be managed and lead to fulfilling lives,” she said. “I am tired of reading reports that go on about how difficult it is for type 1 girls to get married.”

Even with growing awareness, doctors predict that in the years to come, many more girl children in India will lose their lives to type 1 diabetes, due to ignorance and social prejudice. The disturbing fact is that type 1 figures across the world are surging year after year. As of 2011, there were 500,000 children with type 1 diabetes under the age of 15, out of which, 97,700 of the cases were in India. Every year, the number of children with type 1 diabetes continues to rise by 3%, and alarmingly enough, nobody quite knows why. For every parent who decides to take the disease head-on, there may be many others who choose to let go of their girl child.

Support our journalism by subscribing to Scroll+ here. We welcome your comments at letters@scroll.in.
Sponsored Content BY 

Swara Bhasker: Sharp objects has to be on the radar of every woman who is tired of being “nice”

The actress weighs in on what she loves about the show.

This article has been written by award-winning actor Swara Bhasker.

All women growing up in India, South Asia, or anywhere in the world frankly; will remember in some form or the other that gentle girlhood admonishing, “Nice girls don’t do that.” I kept recalling that gently reasoned reproach as I watched Sharp Objects (you can catch it on Hotstar Premium). Adapted from the author of Gone Girl, Gillian Flynn’s debut novel Sharp Objects has been directed by Jean-Marc Vallée, who has my heart since he gave us Big Little Lies. It stars the multiple-Oscar nominee Amy Adams, who delivers a searing performance as Camille Preaker; and Patricia Clarkson, who is magnetic as the dominating and dark Adora Crellin. As an actress myself, it felt great to watch a show driven by its female performers.

The series is woven around a troubled, alcohol-dependent, self-harming, female journalist Camille (single and in her thirties incidentally) who returns to the small town of her birth and childhood, Wind Gap, Missouri, to report on two similarly gruesome murders of teenage girls. While the series is a murder mystery, it equally delves into the psychology, not just of the principal characters, but also of the town, and thus a culture as a whole.

There is a lot that impresses in Sharp Objects — the manner in which the storytelling gently unwraps a plot that is dark, disturbing and shocking, the stellar and crafty control that Jean-Marc Vallée exercises on his narrative, the cinematography that is fluid and still manages to suggest that something sinister lurks within Wind Gap, the editing which keeps this narrative languid yet sharp and consistently evokes a haunting sensation.

Sharp Objects is also liberating (apart from its positive performance on Bechdel parameters) as content — for female actors and for audiences in giving us female centric and female driven shows that do not bear the burden of providing either role-models or even uplifting messages. 

Instead, it presents a world where women are dangerous and dysfunctional but very real — a world where women are neither pure victims, nor pure aggressors. A world where they occupy the grey areas, complex and contradictory as agents in a power play, in which they control some reigns too.

But to me personally, and perhaps to many young women viewers across the world, what makes Sharp Objects particularly impactful, perhaps almost poignant, is the manner in which it unravels the whole idea, the culture, the entire psychology of that childhood admonishment “Nice girls don’t do that.” Sharp Objects explores the sinister and dark possibilities of what the corollary of that thinking could be.

“Nice girls don’t do that.”

“Who does?”

“Bad girls.”

“So I’m a bad girl.”

“You shouldn’t be a bad girl.”

“Why not?”

“Bad girls get in trouble.”

“What trouble? What happens to bad girls?”

“Bad things.”

“What bad things?”

“Very bad things.”

“How bad?”

“Terrible!!!”

“Like what?”

“Like….”

A point the show makes early on is that both the victims of the introductory brutal murders were not your typically nice girly-girls. Camille, the traumatised protagonist carrying a burden from her past was herself not a nice girl. Amma, her deceptive half-sister manipulates the nice girl act to defy her controlling mother. But perhaps the most incisive critique on the whole ‘Be a nice girl’ culture, in fact the whole ‘nice’ culture — nice folks, nice manners, nice homes, nice towns — comes in the form of Adora’s character and the manner in which beneath the whole veneer of nice, a whole town is complicit in damning secrets and not-so-nice acts. At one point early on in the show, Adora tells her firstborn Camille, with whom she has a strained relationship (to put it mildly), “I just want things to be nice with us but maybe I don’t know how..” Interestingly it is this very notion of ‘nice’ that becomes the most oppressive and deceptive experience of young Camille, and later Amma’s growing years.

This ‘Culture of Nice’ is in fact the pervasive ‘Culture of Silence’ that women all over the world, particularly in India, are all too familiar with. 

It takes different forms, but always towards the same goal — to silence the not-so-nice details of what the experiences; sometimes intimate experiences of women might be. This Culture of Silence is propagated from the child’s earliest experience of being parented by society in general. Amongst the values that girls receive in our early years — apart from those of being obedient, dutiful, respectful, homely — we also receive the twin headed Chimera in the form of shame and guilt.

“Have some shame!”

“Oh for shame!”

“Shameless!”

“Shameful!”

“Ashamed.”

“Do not bring shame upon…”

Different phrases in different languages, but always with the same implication. Shameful things happen to girls who are not nice and that brings ‘shame’ on the family or everyone associated with the girl. And nice folks do not talk about these things. Nice folks go on as if nothing has happened.

It is this culture of silence that women across the world today, are calling out in many different ways. Whether it is the #MeToo movement or a show like Sharp Objects; or on a lighter and happier note, even a film like Veere Di Wedding punctures this culture of silence, quite simply by refusing to be silenced and saying the not-nice things, or depicting the so called ‘unspeakable’ things that could happen to girls. By talking about the unspeakable, you rob it of the power to shame you; you disallow the ‘Culture of Nice’ to erase your experience. You stand up for yourself and you build your own identity.

And this to me is the most liberating aspect of being an actor, and even just a girl at a time when shows like Sharp Objects and Big Little Lies (another great show on Hotstar Premium), and films like Veere Di Wedding and Anaarkali Of Aarah are being made.

The next time I hear someone say, “Nice girls don’t do that!”, I know what I’m going to say — I don’t give a shit about nice. I’m just a girl! And that’s okay!

Swara is a an award winning actor of the Hindi film industry. Her last few films, including Veere Di Wedding, Anaarkali of Aaraah and Nil Battey Sannata have earned her both critical and commercial success. Swara is an occasional writer of articles and opinion pieces. The occasions are frequent :).

Watch the trailer of Sharp Objects here:

Play

This article was published by the Scroll marketing team with Swara Bhasker on behalf of Hotstar Premium and not by the Scroll editorial team.