Amid lockdown, TB patients struggle for diagnosis, treatment; experts predict rise in mortality

Patients wait outside the tuberculosis department of the Lal Bahadur Shastri Government Hospital at Varanasi, Uttar Pradesh, in February 2014. Following the nationwide lockdown to fight the novel coronavirus, patients suffering tuberculosis have been unable to access regular treatment, risking developing a resistance to life-saving drugs. Rajesh Kumar Singh/AP Photo

In the first week of April, a 42-year-old man walked nearly seven kilometres from his house, in the town of Hapur in Uttar Pradesh, to get himself tested for drug-resistant tuberculosis at the TB centre in the district. He works as a tailor and does not own any vehicle. “I walk slowly now,” the 42-year-old tailor told me, sounding breathless over the phone. “I often struggle to breathe. But I plucked up the courage and kept walking.”

During his trek to the TB centre, the tailor said he was stopped by the police and asked where he was going. He was allowed to pass after he told them he wanted to get medicines. It took him about an hour-and-half to walk to the district’s TB centre and around the same amount of time to return. He had to make the journey again to get the results, when he discovered that he had tested positive. With another long walk, the 42-year-old returned with medication. “I felt that if I delayed taking medicines further, I could lose my life,” he said. His name, and those of other TB patients quoted in this story, have been withheld for their privacy.

After Prime Minister Narendra Modi announced the nationwide lockdown on 24 March, the public-health system has been directed primarily towards COVID-19 prevention and treatment. The shutting of outpatient departments in the country’s hospitals have severely affected those with other ailments, such as TB, even though it shows symptoms—cough, fever and difficulty in breathing—similar to those of COVID-19. The consequences have been grave, with the lockdown leading to a sharp drop in the diagnosis of tuberculosis, which in turn could increase the transmission of the disease through undiagnosed patients. Even among patients who have been diagnosed, the restrictions on movement have made it difficult to access regular treatment, which can have irreversible effects of the infection developing a resistance to life-saving drugs.

In India, the Central Tuberculosis Division, which works under the health ministry, implements the TB prevention, treatment and control programme in the country. A dashboard maintained by the CTD shows that TB diagnosis has fallen drastically during the lockdown. In the month before it began, from 25 February to 24 March, there were 1,80,966 reported cases of TB. But from 25 March to 24 April, the CTD dashboard recorded only 57,538 TB diagnoses—about one-third the number of cases. From 6,032 patients a day recorded in the month before lockdown, the dashboard recorded just 1,917 per day detected in the first month of the lockdown—a drop of nearly 70 percent.  

“Though our TB outpatient services are open, the daily footfall in hospitals and other healthcare centres have reduced,” Dr Raghuram Rao, the deputy additional director general of the CTD, said. Rao added that the healthcare workers are also more preoccupied with COVID-19 services, and to some extent, the data entered by the health workers is also not as up to date. But TB has long been a grave public-health concern in India. As recently as 2018, the World Health Organization estimated that there were nearly twenty-seven lakh new TB patients in India. It also estimated that the disease has killed 4,49,700 people that year—more than 1,200 per day, and 32 patients for every 100,000 people. 

“We are currently in firefighting mode,” Rao said about providing TB services during the COVID-19 pandemic where the public health system is geared towards controlling COVID-19 infection. “Once the outpatient department opens up, particularly in the orange and green zones”—areas with few or no COVID-19 cases—“the routine work will start. Interstate travel has been mobilised to some extent already,” he added. Rao said he believed that the “backlog of cases will come down soon” because it was a “short-term lockdown.” He added, “Epidemiologically, I do not think it will make a big impact.” In fact, Rao believed that the social distancing amid the COVID-19 pandemic might even have reduced TB transmission.

But other public-health experts believed that the transmission may have increased due to the number of undetected cases. “I suspect there will be greater transmission of TB within households,” Madhukar Pai, the director of the McGill International TB Centre in Montreal, Canada, told me. “After the lockdown lifts, people will mix, seek care for TB symptoms after many weeks of delay—and might have advanced, smear-positive disease by then—and there is a likelihood of increased community transmission at that time, not just intra-household transmission.”

Tuberculosis services have been affected at several levels: diagnosis, drug delivery, patient counselling, and patient follow-ups, among others. The lockdown seemed to have caught even the CTD off guard, prompting it to issue a notification on 26 March, directing state departments across the country to ensure that all patients receive a month’s supply of drugs. The notification also directed government health facilities to provide TB drugs to patients who are unable to reach their treatment centre. While these patients could be tracked because they are recorded in the government’s system, the ones most affected are those who have not yet been diagnosed and are unable to get tested—unless they are willing to walk for several kilometres at a stretch, as the 42-year-old tailor from Hapur was forced to do.

The tailor said he had been receiving treatment for TB intermittently for the past ten years. He knew that the earlier course of treatment had failed because his health had not improved. Having spent a lot of money on treatment in the private sector, he said he decided to try the government hospitals. With this in mind, he undertook the journey to the TB centre. He was desperate to get better. “For the past ten years, I have been sick,” the tailor said. “I feel well for some time when I take medicines for about six to eight months and then again fall sick.”

His long walk to the TB centre proved valuable. The 42-year-old was diagnosed with multi-drug resistant tuberculosis or MDR-TB, which is resistant to two of the most effective first-line TB drugs—rifampicin and isoniazid. His case is typical of many drug-resistant tuberculosis patients, who sometimes spend years trying to find the right diagnosis and treatment. Yet, his ordeal may not be over as his diagnosis is still incomplete. 

His sample was tested using the Cartridge-based Nucleic Acid Amplification Test, or CBNAAT, a preliminary test that confirms MDR-TB by evaluating the resistance to one first-line drug, rifampicin. While the Hapur TB centre was equipped with the CBNAAT test, the tailor was not able to take any of the follow-up tests. Under normal circumstances, his sample would have been sent from Hapur to Meerut’s Subharti Medical College, for a Line Probe Assay, or LPA, which tests the TB bacilli strain’s resistance to second-line drugs, particularly a class of antibiotics called fluoroquinolones and injectables such as kanamycin.  

Considering the complex drug-resistance pattern of the TB, first and second-line LPA is important to ensure that patients do not have resistance to other drugs, apart from the first-line drugs, before they are prescribed medication. If there is further resistance to other drugs, patients are given a tailor-made regimen depending on their patterns of resistance. 

This is especially critical for patients with a long history of TB and possible exposure to different drugs, or patients who live close to other MDR-TB patients. But it did not happen in the tailor’s case. told me. As a result, Kumar added, patients diagnosed with MDR-TB are just being given a standard drug regimen that lasts nine months. Such patients cannot afford any further delays or hurdles in accessing healthcare because if the regiment is not suited to them, it could lead to further drug resistance.

While the tailor’s samples could not be sent for an LPA, he is also among those lucky enough to undertake a CBNAAT during the lockdown. Not all patients would be able to make that journey, particularly those residing in far-off villages. “We are worried that the patient is not able to travel to a Primary Health Centre, let alone to a district headquarters where some of the tests, such as CBNAAT, are available,” Dr KN Sahai, Bihar’s TB programme officer, said. “Our samples usually travel from the PHC to the district headquarters. But we have no means of transporting the samples.” Rao, from the CTD, also admitted that sending couriers with samples during the lockdown has been a challenge. In some districts, the TB department staff are delivering the samples to testing centres themselves. Rao said that the utilisation of CBNAAT has fallen across India—ranging from a fall of two percent in Assam, up to 40 percent in Maharashtra. 

Among the patients hit the hardest have been those receiving treatment from private doctors. After the lockdown, there has been a drop of nearly 80 percent in the diagnosis of new TB patients, according to the CTD dashboard, since many private clinics are shut. There were 46,334 cases diagnosed from the private sector in the month before the lockdown. It dipped to 10,072 in the month after it began.

“In the past one month, I have not diagnosed a single patient,” Dr Sarthak Rastogi, a pulmonologist at Mumbai’s Holy Family Hospital, told me. “And this is in Mumbai, which has a robust infrastructure related to TB control and treatment.” Rastogi added that many of his patients who had given tests before the lockdown have not even been able to get reports after being diagnosed because they were unable to travel to his clinic.

In India, the majority of TB patients receive treatment in the private sector. In June 2018, the World Health Partners—a non-profit working towards providing accessible health services to India’s underprivileged population—established the Joint Effort for Elimination of Tuberculosis. The JEET project links private practitioners with the public-sector programme in order to increase the TB patients under the government system, in order to help standardise diagnosis and treatment. Patients diagnosed under the JEET project are given access to free testing and treatment in the public sector.

Dr Nita Jha, a public-health professional working with World Health Partners out of its office in Bihar, said the state had barely recorded any cases in April. “We got only four cases in Patna this month as the private doctors have stopped their outpatient department,” she said. The organisation used to record at least 1,400 cases every month through private doctors. Jha said that they contacted their patients and are delivering medicines wherever possible. But not all places are accessible. 

For instance, a thirteen-year-old from Hajipur city in Bihar’s Vaishali district, has not taken his medicines in a month. He was only able to complete four months out of his six-month regimen before he ran out of medicines. “Till he was taking medicines he was fine,” his father told me. Now, the 13-year-old has started coughing again, his father added. “I was told to go to the chemist, but even the chemist is about six kilometres from my house. I have no vehicle.”

The consequences of interruptions in treatment can be severe, because a failure to complete a course of medicines can lead to the bacteria that causes TB to develop resistance to the drugs that fight it. “I predict a big slump in TB treatment adherence because of treatment interruptions,” Pai told me. “Every time the treatment is interrupted, we risk bad outcomes such as recurrence of the disease and even mortality. Every time a patient starts and stops treatment, he or she risks drug resistance.”

A 40-year-old resident of Odisha’s Rourkela city, had to scramble to get his medication during the first week of the lockdown. Suffering from MDR-TB, he travelled to Patna every month for treatment at the All India Institute of Medical Sciences. “I was to travel to Patna on 23 March,” he said. “After the announcement of lockdown, I tried the chemist shops but I could not find my prescribed medicines. Finally, a nearby TB centre gave me medicines that would last 15 days.” But the 40-year-old was worried that he would develop a resistance to the drugs. “I have been told very strictly not to stop medicines even for a day,” he said. 

While the fear of drug-resistant TB is well-founded even under normal circumstances, it poses particularly difficulties under a lockdown. Patients with drug-resistant TB need to go for regular follow-up visits to a doctor because the drugs have severe side effects, including deafness. Patients need to take about ten drugs, sometimes including injections, which can be intimidating and requires them to feel comfortable and confident about the treatment.

“Drug resistant tuberculosis patients are the most vulnerable group,” Pai said. “Only one in five patients survives the long cascade of care. They are fragile to begin with. They may need injections. They have side-effects that may need to be managed. Many may even require hospitalisation. But that is not possible because hospitals are taken over by COVID-19 response. Overall, I worry that TB mortality will increase.” A senior pulmonologist who works in a premier government hospital in Delhi, and requested not to be identified, echoed the fear about the rise in TB mortality.  “We don’t know whether the mortality occurred as a consequence of reduced functioning will really be compensated by lives saved by COVID-19,” the senior pulmonologist said.

Ranjeet Acharya, who works as a medical counsellor in the TB centre at Latur district, in Maharashtra, said that the department staff is in touch with patients over the phone since they cannot travel to the district headquarters. He said that some of his patients did not have enough food at home because the earning members of the family were out of work. “I drove a hundred kilometres to four TB patients’ houses and delivered some rations,” Acharya said. “It is very important for TB patients to eat protein rich food.” Bichitra Jena, a health activist, recounted stories of similar hardship among patients in Odisha’s Khurda district. “One of the patients told me that her husband was an auto driver and was out of work,” Jena said. “There was no food in their house.”

On 4 April, the WHO published a note titled, “COVID-19: Considerations for tuberculosis (TB) care,” in which it noted that TB patients who have lung damage may suffer from more severe illness if they are infected with COVID-19. It added that there was a strong case of testing for both conditions, especially in high-burden TB areas. This is especially true of Mumbai’s slums, which have turned out to be both red zones for COVID-19 and high-burden TB areas. Acknowledging the vulnerability of TB patients, Rao told me that the CTD is planning to test TB patients for COVID-19, especially in red zones, and actively find cases after the lockdown.

A return to normalcy in diagnosis and treatment procedures could help patients who need easier and more frequent access to doctors and healthcare. For instance, a 17-year-old resident of Dhaulana in Hapur, was detected with MDR-TB in April, and has been suffering from severe side-effects due to the medicines. “He is barely conscious and vomits often,” his brother told me. “We are giving him a pill every hour.” He added that a local doctor administers injections daily.

For the 17-year-old’s family, this is the second time they are dealing with such a case. His 25-year-old sister also had MDR-TB and visited many doctors, including those in Delhi’s premier National Institute of Tuberculosis and Respiratory Diseases. She died a few years ago. The 17-year-old is supposed to get an X-ray and second-line LPA tests, which are not possible presently. “I worry that like my sister, he is not getting the right treatment,” his brother said.