In late 2013, Meera Yadav, now 34, developed a persistent cough that didn’t go away even after consultations with a general physician. Within days, she found that she was coughing blood. What followed was an ordeal that lasted almost five years. Meera was initially diagnosed with multidrug-resistant TB (MDR-TB) but was later found to have extremely drug-resistant TB (XDR-TB). In the long process of recovery, she had to have her right lung removed.
MDR-TB and XDR-TB are types of drug-resistant TB (DRTB), which occurs when TB bacteria can no longer be killed by two or more standard TB drugs.
Apart from its physical impact, DRTB exerts a significant financial as well as psychological burden on patients.
Meera, for instance, had to contend not only with the physical toll of the disease, but also stigma from friends and family, which led to her being separated from her four-month-old baby.
There are multiple ways of developing drug resistance. It may occur if patients do not take drugs regularly, as prescribed. Patients may sometimes stop taking drugs if they cause side effects. At other times, the treatment is interrupted through no fault of theirs, such as when there is a shortage of drugs.
India has been facing a shortage of TB drugs since last year. In the last few months, even DRTB drugs like cycloserine, linezolid, and clofazimine have been short in supply, creating difficulties for patients.
Drug resistance can also happen if doctors do not prescribe the correct combination of drugs. Lastly, there is also primary drug resistance, wherein a loved one of a patient may acquire DRTB from them.
“While the treatment of drug-susceptible TB (DSTB) takes about 6-9 months, that of DRTB takes a minimum of 18 months. And while a DSTB patient takes around 6 pills per day, a DRTB patient takes a minimum of 10-12 pills per day,” says Dr Vikas Oswal, who treats around 1,800 patients of TB every month. Around 30 per cent of them are DRTB patients.
“I took around 25-30 pills every day, including those for vitamins,” Meera says.
India launched the Global Initiative on Digital Health during a G20 summit programme at Gandhinagar earlier this year. The world over AI and digital technology are being integrated into TB treatment. Mumbai is no exception; the BMC is keen on integrating whole genome sequencing (WGS) into the diagnosis of DRTB.
But before these ambitious plans take flight, it is crucial to get basic healthcare delivery systems in place. The recent shortage of crucial second-line TB drugs shows the glaring gaps in the systems that already exist.
India contributes around 27 per cent to the DRTB burden globally. Mumbai alone sees a total of 4,000 to 5,000 TB cases every year. As the financial capital of the country, the city sees lakhs of people entering and exiting every day. With closely packed houses that lack ventilation and sunlight, it provides an ideal space for TB to thrive.
In 2022, President Droupadi Murmu announced the ambitious target of achieving freedom from TB by 2025. In light of this, let us look at some crucial aspects of TB healthcare in Mumbai (focusing especially on DRTB) that need to be improved if we are to achieve this goal.
We spoke to doctors, activists, patients and others working in the TB space in Mumbai to understand the steps needed in terms of prevention, diagnosis and counselling support to tackle TB. Their recommendations range from provision of nutritional support to improvements in primary healthcare to a more patient-centric approach.
Interventions for prevention
“Eating and working habits have gone from bad to worse in the last few years; stress is on the rise; even the number of diabetes cases is going up,” says Dr Oswal to explain the high incidence of TB.
He says that TB can no longer be called a poor person’s disease. If a host’s immune system is compromised, they are vulnerable to TB bacteria. “One doesn’t become an active patient just by virtue of TB bacteria entering their body,” says Dr Lalit Anande, ex-superintendent of Sewri TB Hospital. “In a healthy person’s body, the bacteria can stay within a cell without multiplying for almost 5-8 years, waiting for the immunity to go down.”
When the immunity goes down, the bacteria multiplies and the person develops TB symptoms like coughing, sneezing and so on. But what was preventing TB all this while was the person’s immunity.
“Immunity revolves around four things—vitamin C, vitamin D, nitric oxide, and hydrogen peroxide. In fact, it is well known that vitamin C kills TB bacilli,” says Dr Anande, advocating for the use of these nutrients as preventive measures.
Dr Anande argues for more nutritional support by the government, in addition to the drug support. A recent Reducing Activation of Tuberculosis by Improvement of Nutritional Status (RATIONS) trial showed that providing nutritional support to contacts of TB patients reduced the incidence of all forms of TB by 40 per cent.
“Infection control measures also need to be implemented at the primary health centres,” says Ganesh Acharya, a TB activist.
In particular pockets of Mumbai, overcrowding and poor ventilation are a major problem. “The SRA buildings in particular have narrow spaces in between them and sunlight does not reach the lower floors. These are conditions in which TB bacteria thrive,” says Dr Aparna Iyer, project medical referent at MSF’s DRTB project in Mumbai. The MSF is an international medical humanitarian organization that has been working in Mumbai since 1999.
Primary healthcare and community-based care for TB
Ganesh Acharya feels we need a robust primary healthcare infrastructure to deal with TB.
His views are in line with those of the UN, which advocates for universal health coverage as a key step in achieving TB eradication. In 2022, a paper published in Lancet elaborated on the effects of the Family Health Strategy in Brazil, which covered almost 63% of the country’s population by 2015. The programme was associated with a lower TB morbidity and mortality burden.
At present, doctors at primary health centers aren’t aware enough about DRTB and don’t know how to deal with it, Acharya adds.
Besides, community involvement in TB treatment is still in the early stages in India. The Nikshay Mitra scheme was announced in September 2022, under which individuals, corporate entities, elected representatives, NGOs, and so on, could come forward to sponsor nutritional and other needs of TB patients. The initiative has seen few takers, however. Till October last year, around 20,700 patients were adopted by 2,324 sponsors in Maharashtra, with NGOs and individuals constituting the bulk of the sponsors.
Acharya cites the example of the TB support provided by the BEST(Brihanmumbai Electric Supply & Transport). TB patients associated with the BEST can get access to free treatment at their depot dispensaries.
Dr Iyer reiterates the importance of awareness at the community level. “Multi-stakeholder meetings need to be organized in mission mode if we are to achieve the TB-free goal. These need to go beyond the medical sector, and must involve the development sector too.”
Improvements in diagnosis and treatment procedures
Acharya argues for making diagnostic tests like CB-NAAT more accessible.
CB-NAAT is used for the rapid detection of TB and to determine if a patient is resistant to rifampicin, a key first-line drug used in TB treatment. “CB-NAAT can deliver results in two hours. But due to the high TB burden in Mumbai, patients have to wait for three-four days to get results,” he says.
More CB-NAAT machines need to be brought in to meet the demands of a city like Mumbai, Acharya feels. “In less populated areas of Maharashtra like Aurangabad and Sangli, results can be accessed faster since the backlog is less.”
Permissions could not be received from the TB office of Mumbai to confirm Acharya’s account.
Acharya adds that an aggressive test-and-treat policy also needs to be implemented, with a focus on active case finding. More diagnostic facilities for TB need to be made available so that patients can access them near where they live.
The adverse side effects are also a matter of concern when it comes to DRTB treatment. To cite only one example, Savita, 27, an MDR-TB patient, points out how drugs like clofazimine cause discoloration of patients’ skins. This only increases the stigma that patients face as they have to offer explanations.
In 2022, the WHO updated its guideline for the treatment of DRTB patients, pushing for shorter regimens that required less number of drugs. India is pilot-testing WHO’s guidelines and the Shatabdi Hospital in Govandi is one of the institutions where the early trials are being carried out.
Drug shortages, especially for DRTB patients, is another matter of concern. In the last few months, family members of patients have been running pillar to post trying to procure medicines by themselves.
India ranks third in the world in the production of pharmaceuticals and biotechnology. Yet the country is systematically killing patients, Acharya feels.
“There is no point to making the drugs free if the patients can still not access them,” says Meera.
Counseling and countering stigma
Meera was lucky enough to get access to bedaquiline and delamanid at the DRTB centre of MSF when the drugs had just been rolled out in India. What she also received at MSF, however, was counseling support. She had earlier received treatment at a private hospital as well as the Sewri TB Hospital but had not found counselling support anywhere.
“TB is also a mental disease. TB patient finds it hard to understand why they are being stigmatised against,” she says.
Meera faced ostracisation not only at home but also at hospitals other than the MSF institution.
“I would be admitted but no one, not even nurses, would want to come near me,” she says.
Now divorced from her husband, Meera was only able to recount the struggles she faced at home when she went to the MSF centre.
“At MSF, I felt at home. I would often throw up after taking injections, but the nurses would rush to me and stroke my back,” she says.
“Patient-centric care is provided at MSF’s independent clinic. Apart from providing information about the disease itself, we also screen for underlying mental health issues like depression. We also provide support to caregivers of patients,” says Dr Iyer. The MSF clinic incorporates age-appropriate counseling for younger patients, too.
Meera feels TB treatment needs family counseling, too, wherein the patient’s family members are sensitised about TB treatment. Savita, who is still to recover from MDR-TB, feels vocational support should also be provided to TB patients.
“There is no provision for friendly counseling as part of the government’s efforts,” says Dr Anande.
To understand the TB burden in India, one has to go past looking at data and statistics alone. It is only when one hears the stories of people like Meera and Savita that one can begin to understand what a TB patient goes through. Savita, for instance, who is currently admitted at the Sewri TB Hospital, lives all alone and has been abandoned by her husband.
Perhaps the hope lies with TB survivors like Meera Yadav and Ganesh Acharya, who have taken up the mantle of TB activism after having survived through it themselves.
“TB activism is missing in India with very few patients willing to speak up about their troubles and gaps in government policy regarding drug-resistant TB,” says Acharya.
People like Acharya and Meera are leading the change.
The authors are students of media at SCMSophia, Sophia Polytechnic, Mumbai. Views expressed in the above piece are personal and solely that of the authors. They do not necessarily reflect Firstpost’s views.