Stigma and ignorance at heart of India's diabetes problem

Parth Sharma is 15 years old and has diabetes. He is careful to adhere to his insulin schedule to ensure his glucose levels are under control. He injects insulin up to five times a day from an insulin delivery pen, even at school in the health care room.

A growing concern

"If I don't shoot periodically, I feel thirsty and fatigued. It is a regimen which I have been following for a year and if I miss a dose it tells on me," Sharma, from Mumbai, told DW. He also has a family history of diabetes.

In New Delhi, nutritionist Divya Singh has been seeing children from both urban and rural areas. Singh expresses concern about the potential epidemic of Type 2 diabetes among children as young as 8 to 10 years of age.

"After COVID-19, the prevalence has increased among this unit. Many of them are overweight and complain of frequent urination," Singh told DW.

More and more children are being diagnosed with diabetes in India. The growing numbers are down to multiple factors including epidemiological and nutrition transition and increased sedentary lifestyles.

A recent medical study by the American Medical Association showed that childhood diabetes, which was once generally Type 1 diabetes, is now more frequently Type 2 amid a worldwide increase.

When children have early onset diabetes, there is a high risk of complications affecting kidneys, heart and eyes as they grow up.

Experts say that diabetes in children is a growing concern which requires a multidisciplinary approach for early recognition, long-term management, and prevention of complications.

Stigma

Monika Arora, the vice-president of research and health promotion from the Public Health Foundation of India, points out that the main challenge for diabetes management (Type 1 diabetes) is lack of adherence to insulin regimens.

"Managing diabetes with insulin requires significantly modifying lifestyles, as multiple daily injections are required on a strict schedule," Arora told DW.

Arora says that this was made more difficult by the rampant stigma surrounding diabetes, which makes parents wary of disclosing the condition of diabetic children to school authorities or taking injections publicly.

"School staff and management too need to be sensitized and involved to understand needs of students with Type 1 diabetes. Individuals with diabetes need proper knowledge and support to manage this complex disease," she added.

What is diabetes?

Type 1 diabetes, also known as juvenile diabetes, characteristically occurs among adolescents when the immune system damages beta cells in the pancreas that are responsible for producing insulin.

As insulin is the hormone primarily responsible for moving sugar or glucose into the body tissues, damage to beta cells cuts off that process.

As the cells are unable to utilize glucose for their energy needs, an alternate source of energy, like fat, is utilized, leading to production of ketones, a type of acid.

In fact, a recent national study published by the Indian Council of Medical Research (ICMR), the country's top medical body, found that in 2021, there were 101 million people with diabetes in the country and a further 136 million with pre-diabetes — a serious health condition where blood sugar levels are higher than normal, but not high enough yet to be diagnosed as Type 2 diabetes.

The ICMR also reported an increase in children being diagnosed with Type 1 diabetes. There were 95,600 cases among children below 14 and every year about 15,900 new cases are reported in this age group.

Obesity and poor lifestyle, including sedentary living, are reasons contributing to the rise.

Nikhil Tandon, an endocrinologist and expert on diabetes at Delhi's All-India Institute of Medical Sciences, maintains that a huge cohort of children, adolescents and young adults younger than 25 have Type 2 diabetes and early detection and treatment is important to determine health outcomes as they grow old.

"When Type 2 diabetes manifests in younger individuals, it is a totally different beast from diabetes in older individuals and invariably is more aggressive and more likely to cause complications in adulthood," Tandon told DW.

Type 2 diabetes progresses more rapidly and aggressively in children than in adults and could be lethal if ignored.

Researchers and policy experts maintain that meaningful engagement with people living with diabetes (PLWD), including parents of children with Type 1 diabetes, is the need of the hour.

Better policies and nutrition sensitivity

Dr. Suparna Ghosh-Jerath, the program head of nutrition at the George Institute for Global Health, highlighted the consumption of foods containing processed high fat, high salt and high sugar levels among adolescents.

"We need to provide adequate, balanced nutrition across all stages of the life cycle. Children should be exposed to healthier food options. Plant-based diets with judicious use of animal source foods should be promoted," Jerath told DW.

"Dietary diversity and consumption of local foods should be at the heart of all food and nutrition security programs," she added.

Arora maintained that resource-constrained countries like India already have a heavy burden on the health system. To reduce this load, she says, empowering patients to take charge of their health and not be fully dependent on endocrinologists and diabetes educators for their management will immensely help disease management.

"Apart from proper knowledge and skills, patients with Type 1 diabetes need insulin and quality diabetes care, affordability of drugs, and care providers to embrace the concept of patient empowerment," said Arora.

In terms of diabetes prevalence, the southern and northern regions of India exhibit the highest rates, with urban areas consistently showing high prevalence.

A lower prevalence of Type 1 diabetes has been reported in rural areas, especially for children and adolescents, but it has been suggested this is down to lack of medical facilities leading to improper or underdiagnosis, rather than giving a true reflection of how commonplace the chronic disease is.

With adequate monitoring, a healthy lifestyle and an appropriate diet, juvenile diabetes can be controlled and well-maintained to improve the quality of life of children suffering from this chronic condition.

In May last year, the World Health Assembly, including India, endorsed five global diabetes coverage and treatment targets to be achieved by 2030.

"We hope that we, as a country, make rapid strides to provide accessible insulin to children affected by T1 diabetes and equipment for home measurement of blood glucose," adds Tandon.

Edited by: John Silk