‘Don’t ignore that cough’: Ignorance and apathy about a disease are killing a million Indians a year

In 2014, one of India’s foremost researchers on respiratory diseases went to meet the union health secretary to apprise her of the spurt in chronic obstructive pulmonary disease in India and the need for a strategy to screen and manage patients. The specialist, who collaborates frequently with the Indian government, did not wish to be named.

At the meeting, the health secretary, who seemed unfamiliar with the disease, asked her technical advisor to brief her. “Chronic obstructive pulmonary disease, wahi bimari jo bachon mein hoti hai, [that disease which affects children],” said the advisor, a medical doctor.

His explanation reflected how unaware India was of the gravity of India’s chronic obstructive pulmonary disease crisis – the disease is the second most common cause of death in the country after heart disease. The disease takes years of exposure to smoke from tobacco or coal, wood or cow-dung and other irritants to manifest and its patients are usually above the age of 40.

Five years since there is improved awareness about the disease but India has yet to evolve a strategy to deal with its spread. There were 28.1 million cases of chronic obstructive pulmonary disease in India in 1990. This increased to 55.3 million in 2016, showed a September 2018 study published in The Lancet Global Health. India has 18% of the world’s population but 32% of its chronic obstructive pulmonary disease burden, it further showed.

Chronic obstructive pulmonary disease is responsible for nearly a million deaths every year, as IndiaSpend reported in March. We have explained the contribution of traditional stoves burning coal, wood and cow-dung to the disease in India. In another article we narrated the story of a nation’s toxic air, a dangerous habit and a man slowly claimed by a disease killing more Indians than ever before.

In this article, we look at why India is not responding fast enough to the challenge of containing chronic obstructive pulmonary disease. In our investigations we found a number of reasons. The first being that spirometry – the gold standard test to diagnose the disease – is not commonly used by doctors because they do not know how to read the results. Further, the national non-communicable disease programme does not screen patients for chronic obstructive pulmonary disease. Also more than half of India’s chronic obstructive pulmonary disease burden is due to air pollution, a problem that the country has been struggling to resolve.

Due to frequent hospitalisation, the disease drains patients of financial resources. Annually, India spends Rs 32,000 crore on treating the disease, as per a 2005 report published by the National Commission for Macroeconomics and Health and commissioned by the Ministry of Health and Family Welfare. This is close to Rs 33,651 crore – the amount the health ministry has allocated for the National Health Mission for 2019-’20, and a little less than the allocation of Rs 38,547 crore for the National Education Mission and a little more than the Rs 25,953 crore that has been set aside for the national housing scheme for the urban and rural poor, the Pradhan Mantri Awas Yojana.

Not a part of national screening

The National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke was launched in 2010 in 100 districts across 21 states in India to prevent and control the major non-communicable diseases. The main focus of the programme was health promotion, early diagnosis, management and referral of cases, besides strengthening the infrastructure and capacity building.

At the time the major cause of death and illness was not communicable diseases like diarrhoea, malaria and pneumonia but non-communicable diseases like diabetes, heart disease, stroke and cancer. Six out of ten deaths in 2016 were due to non-communicable diseases, IndiaSpend reported in November 2017.

But between 1990 and 2016, chronic obstructive pulmonary disease moved up from being the eighth biggest cause of disease burden to the second but found no mention in National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke in 2010. It, along with chronic kidney disease guidelines, was included in the programme in 2016 but there has been no effort to screen or manage more patients for the disease in the public health system.

In 2018, India launched Pradhan Mantri Jan Arogya Yojana, commonly knowns as Ayushmaan Bharat. Along with providing 500 million with a health cover, it also aimed to transform 150,000 sub-centres and primary health centres into health and wellness centres. These centres were supposed to provide comprehensive primary care along with health promotion at the community level. To this end, a programme for mass screening, prevention and management of common non-communicable diseases has been rolled out across the country.

In 2018, over 10,000 health and wellness centres were functional and 13 million people were screened for non-communicable diseases like diabetes, hypertension and oral, breast and cervix cancer. But the disease was not part of the screening programme. This despite the fact that in 2016, the disease killed more than diabetes, tuberculosis, malaria and breast cancer combined, as IndiaSpend reported in July 2019.

“Although there is a mention about chronic obstructive pulmonary disease in the non-communicable diseases policy statement, there is still no structured programme yet to combat the disease like there is for hypertension, diabetes and cancer,” said Sundeep Salvi, director of Chest Research Foundation, Pune, a research institute that focuses on lung health. “I believe this is because officials in charge of non-communicable diseases do not know how to prevent, screen, diagnose and manage chronic obstructive pulmonary disease patients.”

Chronic obstructive pulmonary disease does find a mention in the National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke guidelines for 2013-’17, but only twice, while diabetes is mentioned 87 times.

“We give each state a budget of Rs 150,000 for equipment and Rs 250,000 for medicines under National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke,” said Rajeev Kumar, director, non-communicable diseases department, at the union health ministry. “States can use this budget for treating chronic obstructive pulmonary disease by either getting spirometry or for getting ventilators or oxygen supply.”

The government is coming up with new clinical guidelines for chronic obstructive pulmonary disease which will be issued soon, he added. “All new All India Institute of Medical Science centres will have a pulmonology department which can treat cases,” he said.

Why do the new health and wellness centres not screen patients for chronic obstructive pulmonary disease? “We cannot screen all diseases at once, we have just started, give us time,” Kumar said. Patients being screened for tuberculosis were asked about their smoking habits and the use of biomass for fuel in their homes, he pointed out and these were also factors in chronic obstructive pulmonary disease prevalence.

Difficulty in diagnosis

It is not surprising that the disease is not present in the National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke guidelines because its diagnosis is challenging. It requires a test called spirometry, which is not commonly available in India’s clinics, hospitals or public health facilities. The patient is required to blow into a tube connected to a rectangular apparatus which yields a graph-like report that has to be interpreted by a trained technician.

Without spirometry and using only history and clinical symptoms to diagnose the disease, almost 60% of patients escape detection, including 44% with severe disease, showed a 2003 study conducted in the US on patient data.

The overall use of spirometry has been low in India. Almost 30% of chest physicians, 70% of general physicians, 90% of general practitioners and 80% of paediatricians did not use spirometry to diagnose obstructive airway disease like asthma and chronic obstructive pulmonary disease in 2013, found a survey conducted by Chest Research Foundation. While this proportion increased for all groups as compared to 2005, it is still low considering the high burden of the disease.

The reasons for not using spirometry by doctors were: lack of time (32%), lack of affordability for patients (29%), equipment expenses (28%) and difficulty in performing (10%) and interpreting the diagnosis (8%).

The root of the problem is that respiratory medicine is often neglected in medical college, said BV Murali Mohan, a pulmonologist at Narayana Health, Bengaluru. “When I used to teach MBBS at a medical college, the exam was very heavily focussed on cardiology and neurology,” he said.

For example, in the course conducted for MD or Doctor of Medicine, the long case – where a student is given a case for an hour to examine and diagnose – was usually related to neurology and only a few times did it involve respiratory medicine and even then, it would be TB, and never asthma or chronic obstructive pulmonary disease, Mohan added.

“At MD level, most students are expected to read an ECG from day one and frankly the quality of ECG reading is very good,” he pointed out. “But most of them cannot interpret and even recognise a spirogram.” This is despite the fact that it is easier to read an ECG than a spirogram, he added.

Is there an alternative to spirometry? “No, spirometry is the only way to diagnose chronic obstructive pulmonary disease, at the moment,” said Salvi.

The government is also planning to use peak flow metres – an inexpensive handheld device that can give an estimate of the lung function of the person – in primary and secondary level for identifying patients with impaired lung function for referrals to tertiary centres, said health ministry’s Rajeev Kumar.

“It will take a series of peak flow metre tests and many weeks of follow-up for it to work to diagnose chronic obstructive pulmonary disease,” countered PA Mahesh department head, TB and respiratory medicine, JSS Medical college, Mysuru. “There have been no tests to test their efficacy against spirometry.”

Non-smokers at risk

Lakshamma, 48, starts her day at 4 am, milking her cows and delivering milk to houses across Belavadi, a village 15 km from Mysuru city. She walks slowly, taking small breaks during her 5-km trudge across the village but never fails to deliver milk. Lakshamma was detected with chronic obstructive pulmonary disease when a group of researchers from the JSS Medical college in Mysuru conducted a lung function test on her and a group of 1,084 others from 16 villages in the region for a lung health project named MUDHRA.

Lakshamma cooked on an earthen stove or chulha for 30 years before shifting to LPG a few years ago. Smoke from chulhas from burning wood, coal or cow dung, is a major risk factor for the disease in India, much more than tobacco smoking. More people in India are exposed to ambient and household air pollution than those who are smokers.

This is because 70% of Indian houses use biomass fuel for cooking and heating purposes in poorly ventilated kitchens. In her lifetime, cooking for 2 hours to 3 hours every day, an average woman breathes 25 million litres of very polluted air, according to this 2012 paper.

In a 2016 study where 2,068 women with more than 10 years of biomass cooking were screened, 18% or almost one-fifth were diagnosed with chronic obstructive pulmonary disease. The average age of the women with undiagnosed chronic obstructive pulmonary disease who featured in the study was 47 years. The diagnosis was poor because of low education, poor knowledge about the hazards of biomass burning and the ignorance of health providers.

Lakshamma has not been to a doctor though she has known about her condition for six years now. “I started feeling breathless two to three years ago,” she said when the team from the hospital, along with this reporter, met her at her home. In its initial stages, chronic obstructive pulmonary disease generally does not cause severe chest discomfort but with age, Lakshamma will feel its impact. Her husband Sivanna, who is a bidi smoker, was diagnosed with the disease in 2006 but he has not consulted a doctor either.

Exposure to pollutants

The MUDHRA project was undertaken to estimate the real prevalence of chronic obstructive pulmonary disease and examine risk factors in rural areas between 2006 and 2010. Those tested were followed up again in five years for a repeat lung function test. This study was conducted because most earlier studies on chronic obstructive pulmonary disease were based on a questionnaire and not spirometry and did not explore the dose-response relationship between the disease and biomass fuel exposure.

The study found that of 1,085 people, only 1% of men and 0.6% women had the disease according to the prescribed definition, but nearly half of them had poor lung function. Women less than 40 years exposed to wood fuels for cooking were disproportionately affected as compared to men of the same age.

After the follow-up, 12.6% of those who suffered coughs at least three months a year for at least two years died as compared to 5.7% of those who didn’t. The study highlighted the fact that having a cough for even a few months a year needs to be tested.

“Chronic bronchitis is a part of chronic obstructive pulmonary disease and it can be detected with a simple medical history and risk assessment,” said PA Mahesh, department head of TB and respiratory medicine at the JSS Medical College and the brain behind the project. Identifying chronic bronchitis in the community is important even if access to spirometry isn’t available. “Many of these cases progress to develop chronic obstructive pulmonary disease and have a higher risk of dying even without developing the disease,” he said.

The MUDHRA cohort was also responsible for establishing the link between exposure to biomass cooking and chronic obstructive pulmonary disease. Earlier studies had shown that the minimum exposure of cigarette smoking that was necessary to cause disease is 10 pack-years or 20 cigarettes a day for 10 years. Though biomass exposure was accepted to cause the disease, the minimum exposure that increased risk of disease was not clear. The quantification of exposure to biomass was first described by D Behera from the Postgraduate Institute of Education and Medical Research, Chandigarh and the exposure index can be understood as the product of the number of hours of exposure per day and the number of years of exposure.

“This the first study of its kind in the world,” Mahesh said of the group’s finding that a minimum biomass exposure index of 60 is necessary, to increase the risk of developing chronic lung disease. So a woman cooking for four hours will need 15 years of exposure to be at risk and a woman cooking for three hours will need 20 years of exposure.

Other hazards in rural areas

Due to the high use of biomass fuel, rural areas have as much chronic obstructive pulmonary disease prevalence as urban areas, if not more. States with low economic development that have fewer non-communicable diseases than communicable ones – which means a low epidemiological transition level – have higher disease prevalence due to chronic obstructive pulmonary disease, The Lancet Global Health paper found.

Uttar Pradesh and Rajasthan have high disease burden for chronic obstructive pulmonary disease and asthma and the lowest reduction in the number of cases compared to the states with high low epidemiological transition level such as Punjab, Kerala and Tamil Nadu.

“I used to be very strong, doing so much work single-handedly,” said R Devaraj, 68, who was detected with chronic obstructive pulmonary disease this year. “Now, look at me, I am so weak, I can’t even ride a bike.” R Devaraj is not a smoker and works as a farmer in a Mysuru district.

Farming is a known chronic obstructive pulmonary disease risk due to dust and chemicals in pesticides, said Mahesh. Other occupational risks include working in mining, smelting, animal husbandry, chemical factories etc.

After air pollution in 53.7% cases and smoking in 25.4% cases, occupational risks is the third leading risk factor for the disease in India.

“We cannot say with certainty about how much exposure to ambient air pollution will lead to disease,” said Mahesh. “We need more funding and research to find these answers.”

Mahesh had a simple message for those seeking to curb the disease: “Don’t ignore that cough.” Studies have shown those with a persistent cough that lasts more than three months a year have double the mortality than those who didn’t. We also know that switching from biomass to cleaner fuels will reduce a large number of chronic obstructive pulmonary disease cases in rural areas. Quitting smoking will help as will screening of vulnerable populations.

Ultimately, it is increased awareness that will help India beat the disease, Mahesh said.

This article first appeared on IndiaSpend, a data-driven and public-interest journalism non-profit.