In a world, where tuberculosis (TB) is still a taboo, 25-year-old Chandni Mahajan is one of the few people who don’t want their identity to be wrapped under sheets of anonymity. This image consultant at WishBox Studio, a public relations and communication design studio in Delhi, is happy to share her experience in the hope that more people will be able to come out and take proper treatment. “I found I had TB when I was asked to get some regular blood tests done. Thankfully, since I went to a doctor as soon as the symptoms showed, I got good treatment on time.”
“Anything that’s diagnosed at a nascent stage has more chances of being cured quicker. Hard lumps in my throat and a swollen neck were my main symptoms. It felt like something was stuck in my throat. I took medication for nine months. The doctor warned that if I skipped the medicine, I will have to restart the course, so I never dared to miss even a dose,” Mahajan says. She feels that there are many prejudices concerning TB in society. “People are very judgmental. They have categorised certain diseases as objectionable and non-acceptable. Most of the people just follow these stereotypical behaviours blindly. It’s really strange,” she says, adding, “People should stop caring about what relatives, friends and neighbours think. That’s where the problem of hiding things starts, and once you get into that rut, you’ll never take the treatment.”
According to the latest World Health Organisation (WHO) report, nine million people suffer from TB globally every year, of which around 2.1 million cases are reported from India alone. What is alarming is the fact that India’s Revised National TB Control Programme—the largest of such in the world—places more than 1,00,000 patients under treatment every month.
“Almost 1,000 people die of TB in India per day which means there are two TB-related deaths every three minutes in the country,” says Dr Prashant Saxena, Head of the Department, Pulmonology, Saket City Hospital, Delhi. The WHO data comprise only the reported cases; owing to the stigma attached to this disease, many goes unreported. “Because of the unfortunate social stigma, a large number of patients get treated by private practitioners and there is no official record. There is no doubt that the magnitude of the problem is immense and should be treated like an epidemic. At Sir Ganga Ram Hospital, we see a large number of patients with all forms of TB. This would be approximately 500 new patients every month spread across all specialities. It is a significant number for a tertiary care hospital and we have a fair number of drug-resistant cases too,” says Dr Neeraj Jain, Chairman, Department of Chest Medicine, Sir Ganga Ram Hospital, Delhi.
A sociological study on stigma among TB patients in Delhi was carried out at New Delhi Tuberculosis Centre to define the problem of social stigma among TB patients in the domiciliary area covered under Revised National TB Control Programme. The findings state, “There was an immense stigma observed at society level with 60 per cent of the patients hiding their disease from friends and neighbours. Stigma was observed more among middle and upper middle class when compared to lower middle class and lower class. Gender-wise, it was observed that the stigma was more among females than in males.” The study further states, “While men have to deal with the stigma at their workplace and at the community level, women are faced with ostracism within the household and in the immediate neighbourhood. They are also inhibited in discussing their illness and participating in social functions due to fear of becoming an outcast.”
Another misconception is that TB is only a ‘disease of the poor’. When Rajeev Shukla (name changed) was diagnosed with TB, it took him a while to understand that being from the affluent class did not mean he was immuned to the ‘poor man’s disease’. With a persistent cough that plagued him for months, he first tried to dismiss it as something not to be worried about. But it was only after he started losing weight and suffered from chronic bouts of high fever that he visited a doctor. His chest X-rays showed signs of TB and were duly confirmed by a sputum test. “On further evaluation, I found that his driver, who had poor living conditions, too had TB. I treated both of them,” says Saxena. “Besides the taboo attached to it, lack of access to healthcare by the financially weaker section and insufficient rapid diagnostic test are the challenges that specialists have to overcome while treating TB,” he adds.
Another growing concern is the increasing number of drug-resistant cases in the country. “Multidrug-resistant (MDR) TB refers to the infection that is resistant to isoniazid and rifampicin, two of the most important first-line antibiotics used to treat this disease. MDR TB requires extensive treatment (two years or longer) with multiple drugs, and outcomes are usually poor. Treatment of drug-resistant TB is very expensive because of the high cost of second-line TB drugs,” says Dr Vivek Nangia, Director and Head, Pulmonology, Fortis Flt Lt Rajan Dhall Hospital, Delhi. A bigger problem is the emergence of extensively drug-resistant (XDR) and total drug-resistant (TDR) TB. “This is largely a result of very poor management of the so called ‘normal’ TB, with people not taking their first line treatment in adequate doses for the optimum period. All medical practitioners have to adhere to guidelines which are well established and ensure cure. Unfortunately, this is not happening,” says Jain.
India has the largest number of MDR TB cases in the world and Mumbai has alarmingly high cases of these, says Dr Alpa Dalal, Head of Department of Pulmonary Medicine at Jupiter Hospital in Thane, Maharashtra. “The National TB Control Programme provides standardised treatment regimens—a fixed combination of six drugs—to patients with MDR TB without appropriate laboratory tests to determine whether each drug would actually work for every patient.” A study published in medical journal PLOS One in January, conducted by eight healthcare facilities in Mumbai, suggests that this strategy may not work for more than 50 per cent of MDR TB patients. The study also looked at time trends from 2005 to 2013 and it was observed pure MDR TB incidence is falling while incidence of worse forms of drug-resistance TB is rising.
One way to bring down the growing drug-resistant bacteria would be by following the WHO-recommended Directly Observed Treatment, Short Course (DOTS) strategy diligently, which ensures the personal attention of the health staff for each TB patient. India, under the Revised National TB Control Programme, runs the second largest DOTS programme in the world.
Parasuraman T, a counsellor at Integrated Counselling and Testing Centre, has been working as DOTS provider. Every day, for the last four years, he visits TB patients and ensures that they take their daily dosage of medicines correctly. “Initially, patients are cooperative, but after two months of treatment, they begin to feel healthy and tend to discontinue the six-month treatment believing that they are cured. Then, things take a turn for worse. The disease relapses and they develop what is called MDR TB,” says Parasuraman. The role of DOTS providers, though simple, has been crucial in containing the rise of drug resistance at large. “While regular TB has a cure rate of 85 per cent, MDR TB has a mortality rate of 40-50 per cent. It is purely a result of poor treatment such as drugs not given on time, proper doses not being administered and so on,” says Dr G S Chabbra, Senior Consultant, Pulmonology, Fortis Escorts, Faridabad.
Another huge deterrent to TB control is the millions of patients who are wrongly diagnosed or are unaccounted for in the public health system. Of the nine million TB-infected people in the world, three million are believed to be missing proper treatment, of which India accounts for one million. While government gives free drugs, free treatment and DOTS system to stifle the growth of TB, close to 60 per cent of the patients still seek private treatment as the first point of care.
Diagnosis of paediatric TB is another herculean task for our health system. Considering the fact that diagnosis of TB in general requires a certain level of clinical expertise, it is even more so in case of children. Dr Soumya Swaminathan, director, National Institute for Research in Tuberculosis (NIRT), Chennai, explains, “The diagnosis of the most common form of TB, pulmonary TB, relies on sputum test and in the case of children, it is practically difficult to obtain these samples. Even if obtained, the yield of bacteria may not be good, resulting in improper diagnosis. So other specimens are collected and tested. Good infrastructures, combined with skilled clinical observation, are necessary to diagnose TB in children.” This is precisely why NIRT has stepped up to train paediatricians across the country to diagnose TB at an early stage. “While prolonged fever, with or without cough, night sweats are common symptoms of pulmonary TB, failure to gain weight, lethargy, swelling in necks or armpits, irritability can point towards non-pulmonary TB. WHO-recommended Xpert MTB/RIF, an automated diagnostic test that can identify TB by nucleic acid amplification technique (NAAT), is the best diagnostic tool to detect the disease at an early stage,” says Swaminathan.
In a positive step towards integrating public and private health care systems, the government launched Nikshay (www.nikshay.gov.in), a web-enabled application that records and monitors the data of TB patients across the country, in 2012. Every private player who treats a TB patient is expected to notify the system about the same. But according to sources, the numbers of private players who notify the system are disturbingly low. Penalising the private doctors who do not inform the system would only lead them to hide it. A solution can be to link the availability of TB drugs only on notification, which means a doctor can prescribe medicines only after registration to Nikshay. Right now, Nikshay has been used primarily for patient follow-up, contact screening and to understand the gravity of the problem in each geographical location.
Broadly there are two types of TB—the conventional or typical TB and the atypical TB. “The former is caused by bacteria called Mycobacterium Tuberculosis while the latter is caused by a group of bacteria called Mycobacterium Avium Intracellulaire Complex (MAIC). Although, in the past, atypical TB was more common in immune-compromised individuals like those suffering from AIDS, or those on immune-suppressive therapies, now it is known to occur even in those who have a normal immune status. The conventional TB is anytime more prevalent not only in India but across the globe,” says Nangia. Atypical TB can infect the lungs, lymph nodes, gastrointestinal tract, skin, and soft tissues.
For 64-year-old Adarsh Bhalla, a former personal assistant to a judge in Delhi’s Tis Hazari Court, it was one long arduous journey to healthy living. “I first had fever in March 2011 and then was diagnosed with spine TB in August 2011. By then, it was at the second last stage, and I was strictly told to follow the prescribed course of medication for one year, failing which, there could be serious repercussions. I had to undergo many tests, including urine test, many MRIs (lungs, chest etc.) and CT scans, but the doctors could not find the reason for the fever. I lost five kilograms within six months, and it continued to drop, following which I was admitted to the hospital,” says Bhalla. The days in the hospital were accompanied with several bouts of feeling restless and low. “I would cry a lot because of my failing health, but my doctors helped me cope with the situation. They told me that every human being has some germs of TB in their bodies, but symptoms do not show until they become potent, which is why, talking about it is very important. I am not ashamed of saying that I have come out of danger. I got good treatment because I was willing to come out and do what was necessary,” she says.
The good news, however, is that a new drug has been developed to treat extensively drug-resistant TB. “There is a new drug called Bedaquiline that has already received FDA approval for the treatment of XDR TB and though still not available in India, it looks promising. This very expensive research for newer drugs is, however, a result of mismanaged treatment of an infection and the emphasis should be on treating the basic disease effectively. As with all other infections, emergence of drug resistance is often the result of indiscriminate use of existing good drugs. The supply is not endless, so let us all, patients as well as doctors, try and prevent this,” says Jain. Since prevention is better than cure.
With Rupamudra Kataki, Ayesha Singh, Prabhat Nair, Suhas Yellapantula and Papiya Bhattacharya