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.