Ravi, the owner of a chillare angadi in Mysuru district, was certain that diabetes, often thought of as a disease of the affluent, was not in the cards for him. However, when bouts of fatigue became frequent and refused to abate even after he made concerted efforts to remedy the situation, Ravi grew worried.
A doctor’s visit quickly diagnosed him with Type 2 diabetes at just 29 years of age. It was already too late, diabetes had affected his joint mobility. “I cannot even lift 1 kg with my right arm. This has crippled my trade,” he says.
The shock delivered by his diagnosis was only exacerbated by the cost of treatment. “I had to take insulin and oral medication twice a day,” he says. The monthly cost of medication alone would eat into 30 per cent of his Rs 10,000 monthly income. With his parents, two sons and wife to look after, Ravi is forced to borrow money from time to time.
Miles away, in Bengaluru, a 36-year-old woman, Ratna (name changed) was diagnosed with high blood pressure two years ago. High costs force her to ration her medication. “Whenever I feel light-headed, I take pills for a week or two. After that, I feel healthy, so I stop,” she says.
The World Health Organisation estimates that 60 per cent of all deaths in India are caused due to non-communicable diseases (NCDs). In fact, the percentage of people with NCDs rose from 37.9 per cent in 1990 to 61.8 per cent in 2016.
Despite the increased prevalence, awareness regarding the diseases, particularly in poor households is deficient. Close to one in every two Indians (47 per cent) living with diabetes is unaware of their condition, found a 2019 study conducted by the Public Health Foundation of India, Madras Diabetes Research Foundation and Harvard School of Public Health.
The findings of studies focused on low-income urban settlements like K G Halli in Bengaluru reveal that far from being an illness of the rich, metabolic disorders like diabetes and hypertension are common among the economically deprived. But they go largely unreported. As a result, although people live with these diseases, they are seldom diagnosed before major complications emerge.
Slipping under the radar, diabetes and hypertension have become silent epidemics, sweeping across the nation.
“While traditionally it was observed that people with higher income had higher incidence of diabetes, studies in the urban slums of Bengaluru point out that even among poorer populations, there is a high incidence of the disease,” says Dr Upendra Bhojani, director at the Institute of Public Health.
A comparison between the National Family Health Survey 4 and 5 indicates that women and men belonging to the poorest wealth quintile saw a 37.5 per cent and 10 per cent increased incidence of diabetes, respectively.
Conversely, there was a 99 per cent increase in the prevalence of hypertension (or high blood pressure) among women and an 85 per cent increase among men in this group.
Dr Bhojani explains that the pervasiveness of the diseases has also kickstarted debate whether some areas in the country may be on the cusp of witnessing a reversal in the socioeconomic gradient hypothesis — as a country’s economic and social development progresses, the burden of NCDs and risk factors shifts from the rich to the poor.
“Non-communicable diseases like diabetes can no longer be considered lifestyle ailments but life-course ailments or metabolic disorders,” says Dr Sylvia Karpagam, a public health doctor and researcher in Bengaluru.
Dietary and cultural shifts
Disadvantaged communities are witnessing an upsurge in metabolic disorders due to undernutritive diets. Over the years, food habits have remained primarily dependent on cereals to meet caloric requirements.
Even government food security programmes ascribe undue attention to cereals and have failed to branch out to sources of protein, fibre and other micro and macronutrients. “The public distribution system and the integrated child development system are all cereal-centric. The bioavailability of protein and other nutrients is also low in these foods,” explains Dr Karpagam.
Animal-derived protein, which is highly bioavailable, has become progressively unaffordable and politicised. Even health surveys that test for nutritional deficiencies and anaemia can be inherently biased. “Some posters and questionnaires will ask if the respondent has eaten greens, leaving out meat,” she says.
Organ meats are a valued source of iron. But this is not considered, reinforcing the idea that vital nutrients can only be accessed through vegetarian foods.
The influx of ultra-processed food too, which contains high sodium or sugar content has aggravated susceptibility to diabetes and hypertension.
Ratna, for instance, says she consumes a packet of biscuits or chips with tea after a laborious day. “It takes a long time to reach home and I eat what I get to feel full,” she adds.
This, according to Prasanna Saligram, a health researcher, is also a consequence of people moving to urban centres, where there is a tendency towards consuming non-fibrous, energy-dense foods to satiate hunger.
Food security that comes with owning or working on agricultural land is also gradually on the wane as people migrate to cities. “Even when people are working as agricultural labourers, they have some measure of security as a portion of the crop comes to them under sharecrop agreements,” Saligram says. When income is largely in the form of money, the diversity of food on one’s plate is affected as people are forced to buy all the ingredients, he adds.
Migrating far distances also means that individuals do not have a social network, leading to isolation and alienation. “Added to this feeling of cultural displacement, are the worries of daily life. Many labourers may be working two to three jobs, without resting adequately, and live in cramped quarters. All this adds to stress,” says Saligram. Combined with consuming sodium-rich foods, the uncertainties and weight of modern life contribute to early diagnosis of hypertension.
History of malnutrition
Poor food diversity and deficiencies in protein consumption cause ripples of illness throughout a person’s life, explains Dr Karpagam. In fact, a history of undernutrition predisposes individuals to diabetes. “Childhood stunting can cause the pancreas to not develop properly. The pancreas is key to insulin management,” she says.
Although Type 2 diabetes is generally associated with obesity, undernutrition in childhood alters how and where the body stores fat. “South Asians are particularly susceptible to diabetes right from an early age. They are also more susceptible to getting metabolic and cardiac conditions in 30s and 40s, even though they may not seem overweight,” says Dr Bhojani.
In India, even individuals with low BMI may suffer from insulin resistance — or lean diabetes. “Due to past undernutrition, the body may have trained itself to store visceral fat around organs,” he adds. Combined with a genetic predisposition, this puts communities that have historically been nutritionally insecure at risk for chronic illnesses early on in their lives.
Interrupted care
Dilshad Begum, a resident of K G Halli, Bengaluru, was diagnosed with diabetes five years ago, though her doctors suspect that she has been suffering from the disease for more than 10 years.
For a long time, the treatment Dilshad received was intermittent at best. “My husband suffered from a more advanced stage of diabetes and his treatment raked up a lot of costs. I chose to go to the urban primary healthcare centre to get subsidised medicine,” she says. However, the availability of prescribed tablets was sporadic.
Unable to make ends meet, like Dilshad, some patients turn to irregular administration of pills. “Patients wait for a symptom to flare up. Some may feel pins and needles in their legs, or they may feel light-headed, and so they take pills until they feel a little better,” says Dr Thriveni, a community health specialist.
In an unreliable healthcare system, patients find inadequacies in how their concerns are addressed and stop treatment.
According to the 2019 study by PHFI, only 40.5 per cent of diabetic participants surveyed had sought treatment.
Only 24.8 per cent of all participants had the disease under control. About 75 per cent of patients were “lost to care” — 47 per cent at the awareness stage, 12 per cent at the treatment stage, and 16 per cent failing to achieve control, despite having sought treatment.
While the state and central government have put in place programmes like the National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke (NPCDCS), such efforts have been fragmented in their approach, says Dr Thriveni. This needs to shift to an integrated system which allows for regular follow-up through maintenance of medical records, she adds.
“For diseases like diabetes and hypertension, there is a need for eye checkups, neurological testing and cardiological investigation, but these are generally unaffordable,” she says. There is also a need to strengthen counselling networks and make certain that community workers are able to raise awareness about the ailments.
Roja (name changed), an Anganwadi worker in the Tumakuru district, has observed fissures in the NPCDCS. Under the programme, after a screening test, patients are made eligible for subsidised medications. These can be obtained from a nearby Arogya Kendra or PHC.
“In the past six months, the government has not supplied us with tablets and insulin,” says Roja. Failure to supply drugs that have to be taken daily to manage chronic conditions means that health workers are not able to instill trust in government schemes. “Patients will not understand the importance of complying with daily prescriptions of pills when the scheme fails to make these drugs available,” she explains.
In contrast with Karnataka, Tamil Nadu and Kerala have a robust network that is more successful in distributing pills free of cost. “Since these are illnesses that require medication throughout the course of life, this is the first step the government can take to ensure that chronic diseases are managed,” says Saligram.
Otherwise, the path to effective treatment is ridden with obstacles for economically and socially marginalised communities. The cost of managing diabetes can range between Rs 1,500 and Rs 3,000 per person per month. Outpatient care remains prohibitively expensive, pushing families into acute poverty. “Out-of-pocket expenditure that covered basic treatment costs, in fact, doubled the number of people living under the poverty line in the area that we studied,” says Dr Bhojani.
The cost of drugs also means that some patients seek out alternative medicine, trusting professionals who may not use tested and standardised methods to treat the disease. “There have been instances in the process of seeking out alternative medicine that patients have approached quacks,” says Dr Thriveni.
The consequences of fragmented management of these ailments and seeking treatment from unverified sources can be devastating. To begin with, early detection of the diseases, a key tenet in gaining control, is delayed.
“Late detection can lead to organ damage, leading to blindness, kidney failure, amputations of feet, heart attacks and strokes,” says Dr V Mohan, chairman of the Madras Diabetes Research Foundation. In fact, a third of all chronic kidney disease cases in India have been caused by diabetic complications.
The path ahead
Unmanaged chronic diseases not only seriously deteriorate one’s quality of life but are also expected to cost the country $3.55 trillion in economic output between 2012 and 2030.
The recent swell in the number of hypertension and diabetic patients only portends a future surge in cases. However, both prevention and post-diagnosis care are erratic and in dissonance with the need of the moment. “Policy that aims to address this phenomenon continues to use words like ‘eradicate’, indicating an approach that is similar to programmes that manage the spread of communicable diseases,” says Saligram.
To help people manage chronic ailments access to free or subsidised medicine needs to be strengthened. “Expenditure on pills is only considered when the poor households have money to spare or in the event of a health crisis. There is also a gender component to health-seeking behaviour. Women are prioritised last when buying medicines,” he adds.
Non-communicable diseases require a more holistic approach — including both preventive and post-diagnostic measures.
“We need to encourage exercise, think of creating more commons where people can walk, interact and build community. The problem is we do not view health this way,” says Saligram.
There is also an urgent necessity to refocus food security policies to be more nutritionally diverse, explains Dr Karpagam. “A major driver for the onset of diabetes is the absence of muscle mass and a high percentage of body fat,” she says.
A public distribution system that sources food locally and includes animal-derived protein is imperative, she adds.
Such changes could not only be key in meeting the dietary requirements of people with NCDs but also in preventing malnutrition, protecting more people from entering a vicious cycle of disease and treatment.