Over 34 years, as India’s economy expanded and flourished, Raj Iyer was on the move, travelling at least 14 days a month as a consultant with nonprofit and government agencies.
His itinerant, fulfilling life changed 11 years ago when he repeatedly felt short of breath and was eventually diagnosed with chronic obstructive pulmonary disease, which had debilitated his lungs and his ability to breathe.
Smoking 60 cigarettes a day for 40 years was probably the immediate cause, although worsening air pollution may have played a role. “I knew my symptoms were of a respiratory disease but I didn’t know it was chronic obstructive pulmonary disease,” said Iyer. “I certainly didn’t know how bad it gets or that it is incurable.”
Today, Iyer is 69 and his once expansive life has shrunk to a room in his house in Bengaluru’s eastern Pai Layout, where he lives with his primary caregivers, his 34-year-old son and 27-year-old daughter-in-law, whose lives, as we explain later, are circumscribed by his illness.
“When I first got married [in 2012], his chronic obstructive pulmonary disease was not as bad and he didn’t need continuous oxygen support,” said Antara Karthikeyan, Iyer’s daughter-in-law and a kindergarten teacher.
As the chronic obstructive pulmonary disease progressed, Iyer needed oxygen support, multiple hospitalisations because of breathlessness caused by high levels of carbon dioxide and fell frequently due to his weakening bones. Carbon dioxide which is toxic to the body accumulates when the chronic obstructive pulmonary disease affects the ability of the lungs to expel the gas.
Iyer’s room is taken over by the paraphernalia of his life-support system. A BiPAP machine, which is a respirator that steadies his breathing. A portable oxygen concentrator to take along while travelling. A larger oxygen concentrator, a machine that scrubs nitrogen from the air and gives him a stream of pure oxygen through a 7-metre-long plastic tube that allows him to move around the house. And to keep the life-giving gas flowing even when the electricity cuts out in India’s IT capital, notorious for its shaky power grid, the oxygen concentrator is connected to an inverter.
If Iyer’s professional and personal life followed India’s physical and economic transformation, so did the trajectory of the little-known, ill-managed disease that ravages his body – and is killing more Indians than ever before in a country with growing air pollution, more smoking among young people and an ageing, vulnerable population.
An incurable and progressive disease, chronic obstructive pulmonary disease moved up from the eighth spot to become second on the list of leading ways to die in India, over 26 years to 2016 – the year for which the latest data are available. Chronic obstructive pulmonary disease claimed more victims than either road accidents or suicides in 2016. It claimed more lives than diabetes, malaria, tuberculosis and breast cancer combined in 2016.
Chronic obstructive pulmonary disease is responsible for nearly a million deaths every year, as IndiaSpend reported in March 2019. We have explained the contribution of traditional stoves burning coal, wood and cow-dung to the disease in India. Here, we bring you the story of a nation’s toxic air, a dangerous habit and a man being slowly claimed by a disease killing more Indians than ever before.
Pollution, smoking, ageing
Tobacco smoking is the primary cause of chronic obstructive pulmonary disease worldwide and it is responsible for a fourth of all cases in India. But air pollution–including ambient and household pollution due to biomass burning – is the primary cause of the disease in India and is responsible for more than half, about 53%, of all cases.
The ambient particulate pollution in India rose by 12.5% over 27 years to 2017: from 80 micrograms per cubic metre in 1990 to 90 micrograms per cubic metre in 2017. Over the same period, China reduced its ambient particulate pollution from 58 micrograms per cubic metre to 53 micrograms per cubic metre.
These are population-weighted annual means measuring fine particles, either dust or smoke, that penetrate the innermost recesses of the lungs. Averaged across the country, the data gives weight to areas in proportion to their population so that greater focus is given to areas where more people live. But these averages mask local concentrations of toxic air that may be many times more than the average.
In addition, more than 266 million Indians use tobacco, according to a 2018 World Health Organisation factsheet and while the most common way to die of tobacco is from cardiovascular disease as in 48% of cases, the next is chronic respiratory diseases like this one, as in 23% of cases.
Although the proportion of any smoking among men aged 15 to 69 in India fell 27% over 12 years to 2010, cigarette smoking rose two-fold in that age group and fourfold in the 15 to 29 age group, according to a 2016 paper in BMJ Global Health, a journal.
“Despite modest decreases in smoking prevalence, the absolute numbers of male smokers aged between 15 years and 69 years has increased substantially over the last 15 years,” said the paper. Iyer started smoking when he was 17 and did not quit until a year before he was diagnosed with chronic obstructive pulmonary disease.
A compounding factor in the disease’s rise in India is its ageing population since there is growing evidence that susceptibility rises with age.
Over 21 years to 2011, the number of Indians above the age of 60 rose by 93% from 53.7 million to 103.8 million. The decadal growth in elderly population between 2001 and 2011 was 35.5%, compared to 17.7% growth in the general population.
As the country ages and air pollution rises, chronic obstructive pulmonary disease is likely to be increasingly common in India, experts told IndiaSpend.
India now accounts for a third, about 32%, of all disability adjusted life years – an indicator of overall disease burden – for chronic obstructive pulmonary disease worldwide. Over 26 years to 2016, there was a 54% rise in the share of chronic obstructive pulmonary disease in India’s total disease burden, as it moved up from being the eighth-leading cause of death to the second, according to the 2017 India: Health of the Nation’s States report by the Public Health Foundation of India, a think tank, and the Indian Council for Medical Research, a government-run network of research laboratories.
Within this rise of chronic obstructive pulmonary disease, there are medical nuances that explain why the disease is poorly understood, even by doctors, and poorly managed, claiming more Indian lives than it should.
A cause of death
When Iyer felt the first shortness of breath, constant cough and tiredness in 2006, he went to a cardiologist who suspected it to be respiratory and cardiac-related. The doctor prescribed medicines for both and despite symptoms getting worse, Iyer continued to work and travel.
Two years later, when he was alone, Iyer’s blood sugar levels dropped and he asked his driver to take him to a hospital. There, a number of tests later, his condition was correctly diagnosed to be chronic obstructive pulmonary disease.
It should not have taken two years for a diagnosis because Iyer has been a smoker since he was 17 and smoked, as we said, up to 60 cigarettes a day for 40 years.
As in Iyer’s case, a classic symptom is shortness of breath, although other symptoms can include fatigue, cough and tightness of the chest. Patients feel short of breath because the tubes carrying oxygen to air sacs in the lungs are inflamed – chronic bronchitis – or because smoke damages these sacs, which is emphysema.
Either way, the lungs do not expel carbon dioxide or absorb oxygen as they should, even as airways are inflamed, making breathing difficult. This is especially difficult for older patients.
“At the age of 25, our lungs are at their optimum efficiency [taking in] around four to six litres [of air with every breath], from then on, it gradually declines about 25 ml to 30 ml per year,” said HB Chandrashekar, director of the Jain Institute of Pulmonology and Sleep Medicine at the Bhagwan Mahaveer Jain Hospital, Bengaluru. “For smokers, this is two or three times faster, so about 80 ml to 90 ml decline each year.”
So, by the time a smoker reaches the age of 45, the lung capacity is equivalent to a 75-year old’s, he said. Iyer was 58 when diagnosed.
All his adult life, Iyer’s mother and friends told him to quit smoking. In 2007, he finally did. A year later, he was diagnosed with chronic obstructive pulmonary disease. By then, he was in the second stage of the disease, meaning his case was moderate with symptoms worsening on exertion.
“Usually patients come to chronic obstructive pulmonary disease as an exacerbation of a bad lung infection,” said Rajani Bhat, consultant physician, pulmonologist and critical-care-medicine specialist, who treated Iyer for eight years. “They say that they were perfectly normal before, but the fact is that their lung function has been on a decline for some time, but they felt it only later because of ageing.”
If caught early, ideally in full-body health checks that include lung-function tests, chronic obstructive pulmonary disease can be treated and managed through inhalers, usually, bronchodilators, that open airways and make breathing easier, even though there is no direct cure.
There are several reasons why the disease is not diagnosed early by most Indian doctors:
- It is often confused with asthma because it has some similar symptoms: shortness of breath, wheezing, cough and chest tightness.
- Diagnosis is confirmed with a test called spirometry – measuring how much and how fast the lungs exhale – which is not commonly available in India.
- Most doctors assume only smokers are at risk, thus underestimating the risk to non-smokers who contract it due to biomass burning and occupational hazards like working in mining, textiles, welding, foundry and farming.
- Patients are often misdiagnosed as having asthma and are given inhalers for asthma that is corticosteroid inhalers which do not work.
- Chronic obstructive pulmonary disease often progresses into heart disease, which may be treated but the underlying lung disease remains undiagnosed.
“In our own study, we found that 25% of patients admitted with myocardial infarction [heart attack] had an underlying lung disease which was not known,” said BV Murali Mohan, Consultant, Pulmonology and Internal Medicine, at Narayana Health, Bengaluru.
Unlike heightened general awareness of India’s number one killer – cardiovascular disease – chronic obstructive pulmonary disease is seldom written about in mainstream media.
“It [chronic obstructive pulmonary disease] is not considered of reader or viewer interest,” said Srinath Reddy, President of the Public Health Foundation of India. Coupled with poor diagnosis in primary care, confusion with other respiratory diseases and low self-referrals by patients, it is an ill-understood disease, said Reddy.
Living with the disease
Iyer has watched his ailment gradually take over his life.
From stage two in 2008, the disease within him has progressed to stage four, which means it is now in a very severe stage where hospitalisations are frequent and lung function is limited.
Over the last four years, he has been hospitalised 10 times, mostly with a lung infection or low oxygen saturation in the blood.
In 2019, Iyer has only been hospitalised in January.
“They say if you have not been hospitalised for more than six months, you are doing well,” said Iyer. He has become adept at managing his disease at home, adjusting his BiPAP machine, running his nebuliser, which delivers medication to open his airway in a fine mist and has avoided going to the hospital.
Said Bhat, Iyer’s doctor, “Most patients, especially women, do not want to burden their children and family [and] hence wait till it is too late to see a doctor.” This is being penny-wise, pound-foolish, she said, since regular follow-ups ensure patients do not need to be hospitalised frequently.
Since most chronic obstructive pulmonary disease cases in India are detected late and in stage 2 and beyond, they need frequent hospitalisation, especially in winter.
Iyer spends between Rs 10,000 and Rs 15,000 every month on managing chronic obstructive pulmonary disease, but each hospitalisation that usually lasts a week can cost between Rs 60,000 and Rs 100,000.
Apart from the medical paraphernalia that keeps him alive, opposite his bed is a blackboard, on which daughter-in-law Antara Karthikeyan has written a list of medicines he needs to take every day and in case of an emergency.
Given his research background – he has a master of philosophy degree in social anthropology – Iyer has studied the disease’s mechanism extensively and answered questions on treatment and medicines with ease.
“To treat chronic obstructive pulmonary disease, doctors prescribed steroids, which in-turn bring on diabetes and osteoporosis,” said Iyer. “Because it makes you breathless, you are less active, which further weakens bones and muscles.”
Inhalers do not cause these side-effects, only the oral steroids do, said Bhat, his doctor. “Iyer has to take oral steroids for his exacerbations and he has had to take them over a long period of time” she added. “However he wouldn’t be alive, if not for those medications.”
Yet, chronic obstructive pulmonary disease detected early can be managed and patients can hope for a better quality of life.
An intervention that works as effectively, if not better, than medication for the disease is pulmonary rehabilitation, which includes a 12-week programme of exercises for chronic lung patients under medical supervision, nutritional counselling and breathing techniques.
Exercise improves a patient’s breathing capacity by working muscles that become deconditioned due to disuse. It empowers patients and gives them confidence, so they can be independent, explained pulmonologist HB Chandrashekar of Bhagwan Mahaveer Jain Hospital, who set up Bengaluru’s first, and one of India’s earliest, pulmonary rehabilitation centres in 2012 in the hospital.
Most patients are reluctant to go into rehab, as they consider it unnecessary and most hospitals do not have such a centre since it does not bring in as much revenue as hospital beds do, he said.
Living in Bengaluru possibly took a greater toll on Iyer’s health. Pulmonologists explained how Bengaluru’s unique weather and geographical conditions make its residents especially prone to respiratory illness.
While air pollution is not as high as in New Delhi or in other Northern cities – 15 of which rank among 20 of the world’s most-polluted cities – Bengaluru’s altitude of 3,020 ft or 920 m above sea level and equable climate ensure pollutants do not rise, as they would in warmer weather, but stay close to the ground.
“The treeline in the city, with trees on both sides of the road, is the city’s lungs [but] also trap the pollutants close to the breathing zone,” said Bhat. The city’s high pollen concentration makes residents prone to allergies, asthma and chronic obstructive pulmonary disease.
When Iyer was first recommended pulmonary rehabilitation in 2008, he didn’t take it seriously. In 2015 when his condition worsened, he went to Mahaveer Jain Hospital and accepted the rehabilitation.
He went to the hospital in a wheelchair with oxygen support, slowly he weaned himself off the wheelchair and constant oxygen support. In 2015, he felt better and was physically capable of doing more.
Iyer pointed out that insurance companies do not cover pulmonary rehabilitation. “They are willing to cover chronic obstructive pulmonary disease and pay tonnes and tonnes of money if you claim insurance,” he said. “But [they] will not pay for rehab that will prevent hospitalisation and save them money.”
The rehab costs Rs 1,000 a week, during which there are three one-hour sessions. Iyer paid for and continued rehab sessions for a year and was strong enough to achieve important milestones: his son’s wedding, buying property and travelling.
However, after a series of falls and injuries, he was not able to continue rehab after 2017. As his conditioned worsened, a greater burden is apparent on his family.
Coping with the disease
Chronic obstructive pulmonary disease has altered the way Iyer’s family lives.
His son and daughter-in-law cannot, for instance, travel out of the city at the same time.
Daughter-in-law Antara Karthikeyan was once a retail manager with long working hours, but she was constantly worried about Iyer home alone.
“My number one concern was, what if he trips and falls,” said Antara Karthikeyan. “He cannot get up on his own. How will he call us?”
Her decision to become a kindergarten teacher, so she could return home by afternoon, was a personal choice, she said. She and her husband have hired help to look after their four-year-old daughter, Tanya and be available in case Iyer needs assistance while Antara Karthikeyan is at work.
Chronic obstructive pulmonary disease does not affect only the lungs but causes wider systemic damage because of inflammation. The disease has brought gastritis, diabetes, oedema, sleep disturbance, anxiety and depression to Iyer, who uses music, reading books, watching documentaries and meditation as a way of making peace with his body’s slow degeneration.
This article first appeared on IndiaSpend, a data-driven and public-interest journalism non-profit.