New Delhi: Sheetal Pawar, who lives in Tamil Nadu’s Vellore, was in Mumbai’s Bhandup area to attend her sister’s wedding when the nationwide lockdown was announced in March. Pawar, a multidrug resistant tuberculosis patient, had sufficient medicines, but getting someone to administer a daily Amikacin injection, became impossible.
Single parent and cancer survivor Sima Devi’s 22-year-old daughter was diagnosed with TB two days before the lockdown began on 25 March, and the government hospital near their home in Mumbai allegedly refused treatment because of the Covid-19 emergency, as she was not a previously registered patient. Now getting her daughter treated at a private hospital, Sima Devi is running out of money and doesn’t know how long she will be able to manage.
Up north, a 51-year-old resident of North-west Delhi, who was diagnosed with lymph-node TB in October 2019, was receiving free drugs from the DOTS centre near his home. But under the lockdown, his monthly quota of drugs is running out, and he isn’t sure how to reach the centre, or if it is even open.
These three cases are representative of problems faced by countless tuberculosis patients under the lockdown, in a country that has already been struggling with the highest burden of the disease in the world. India accounts for more than one-fourth of the world’s TB cases — 26 lakh out of 1 crore — and the disease killed 4.49 lakh people in India in 2018, the latest figures available. One-third of global drug-resistant TB cases are also in India, according to the World Health Organization.
On 24 April, the Ministry of Health and Family Welfare wrote to the states to ensure uninterrupted diagnosis and treatment for TB patients, including steps like supplying drugs for a month. But this was exactly a month after the lockdown began.
In the interim, hospitals ran on skeletal staff, with outpatient departments shut and only emergency services operational. Patients could not reach DOTS centres to get their regular stock of TB drugs, nor did they have access to their regular doctors or healthcare staff when suffering from side-effects.
Drop in new TB diagnosis
The diagnosis of new tuberculosis cases has seen a dramatic drop since the lockdown, according to the Central TB Division’s Nikshay portal, which captures real-time data.
The number of new cases detected in April 2020 (accurate up to 27 April) in government-run healthcare centres is 34,342, compared to 1.56 lakh cases in the same month the previous year — a 78 per cent decrease. In private sector facilities, the number of new cases this month is 6,967, compared to 65,735 in April 2019 — an 89 per cent decrease.
Dr Sarthak Rastogi, a pulmonology consultant in Mumbai with a special interest in TB, told ThePrint: “I haven’t got a single patient referred to me with TB-related issues in the past month, as opposed to 15-20 patients before the lockdown.”
With several labs being shut, Rastogi explained, diagnosis is also difficult.
“In our focus on the Covid-19 pandemic, let’s not lose sight of the fact that tuberculosis kills 1,000 Indians every day, a far high number than the coronavirus ever will,” added Dr Zarir Udwadia, one of India’s foremost pulmonologists, who is a consultant at Mumbai’s Hinduja, Breach Candy and Parsee General hospitals.
Udwadia, along with other experts, has written to the National TB Elimination Programme, asking it to release India-specific guidelines on TB and related challenges due to the Covid-19 crisis.
TB care severely affected
Dr Yogesh Jain, co-founder of non-profit organisation Jan Swasthya Sahyog, which runs a hospital in rural Chhattisgarh, said there are grave consequences if TB patients aren’t diagnosed or don’t get drugs amid the Covid-19 pandemic.
“This is because one, TB is infectious, and two, because tuberculosis patients have destroyed lungs, which makes them more vulnerable to Covid-19,” Jain said.
The biggest problem with the lockdown is the lack of transport for patients, Jain said.
“TB impacts the poorest the most, so expecting them to use their own transport is not feasible,” he said, telling the story of a TB patient who was trying to reach Jan Swasthya Sahyog’s hospital due to complications, but could not get past a police barricade, and died.
The aforementioned Sima Devi, a 43-year-old woman originally from Bihar, spoke from Mumbai over the phone about her plight and that of her TB patient daughter. They live in a shanty in Vile Parle. She said the nearest government medical college did not treat her daughter because she was not an existing patient, while a DOTS centre in another hospital was closed, which forced her to go to a private clinic.
“I had a salary of Rs 15,000. Now, I have spent Rs 5,000 in two weeks to take treatment for my daughter at a private clinic,” Devi said.
The government is also figuring out how to cope with this gap.
Joint Secretary (Health) Vikas Sheel said he hadn’t received any complaints about government hospitals refusing treatment to TB patients. Responding to ThePrint’s queries about specific cases where this happened, Sheel said “perhaps the officials need to be sensitised on how to deal with the matter”, adding that it was in fact private clinics that were closed due to Covid-19 fears.
Risk of transmission
Even previously diagnosed patients have had trouble continuing treatment, such as Sheetal Pawar in Mumbai’s Bhandup. The drug-resistant TB patient had found a private clinic in Farid Nagar where she would get her Amikacin injection, but found it closed during the lockdown. She then walked to the doctor’s house to get injected, but he refused in the fear that she may catch an infection, and asked her to visit a government hospital, Pawar claimed.
Two other hospitals under the Municipal Corporation of Greater Mumbai also allegedly denied her treatment. Staff at the TB centres claimed doctors were deployed on Covid-19 duty, she said.
“Missing even a single dose meant risk of developing resistance to the drug,” Pawar said, adding that the anxiety added to her ill health.
She said a van driver overheard her conversations with the hospital staff and put her in touch with a TB volunteer group, which then helped her find a compounder to inject her the medicine.
K.S. Sachdeva, Deputy Director General, Central TB Division, which works under the Union health ministry, said the disruption is also due to “some medical staff not being able to reach DOTS centres due to limited transport”.
Ganesh Acharya, a former TB patient and now an activist, said: “No one talks about the stigma associated with diseases like TB and HIV. Persons’ mobility has been severely affected. Sheetal’s is just one such case among many.”
Acharya added that the government needs to find a practical solution, or else the country could head towards a big TB outbreak amid the Covid-19 crisis.
Even if drugs are available, there are other challenges for newly diagnosed TB patients, said Delhi-based health advocate Chapal Mehra of the Survivors Against TB (SATB) network. He pointed out that tuberculosis drugs have a high risk of adverse side-effects like nausea, vomiting and psychosis. “This makes initial few weeks of treatment very tough, especially without access to doctors and health staff. Patients are struggling.”
Patient support staff like accredited social health activists (ASHA) and auxiliary nurse midwives (ANM), who would usually follow up and counsel patients, are not able to step out in the field anymore.
However, Ashwini Chawla, state TB officer for Delhi, maintained that the concerns were limited to diagnosis and treatment of new cases since certain areas have been declared containment zones and closed due to Covid-19.
“Even then, these patients are being guided to hospitals where they can get treatment,” Chawla claimed.
Having a compromised respiratory system puts TB patients at risk for Covid-19. The district administration in Ludhiana in Punjab, for example, has decided to send throat swabs of people suffering from TB, as they are among the groups that may be particularly affected, according to Additional District TB Officer Dr Harpreet Bains.
Possible spurt in figures
Experts worry that the number of TB cases might suddenly increase once the lockdown ends, because of the backlog.
“The symptoms of tuberculosis and coronavirus are also very similar, so patients are scared to seek care in case they are mistaken for Covid-19,” said Dr Yatin Dholakia, secretary and technical adviser at the Maharashtra State Anti-TB Association, who also provides OPD consultation at a 100-bed municipal hospital in Mumbai. He added that undiagnosed TB patients may be transmitting the disease, especially to their family members who are now forced to spend more time together due to the lockdown.
Malnutrition is directly associated with tuberculosis, and is the main factor behind the 7 lakh cases in India. This may increase, because of the lockdown’s impact on the livelihoods of thousands of informal workers and migrant labourers. Forty per cent of Indians already have latent infections, which may develop into active infections due to poor nutrition.
Not having enough to eat will lead to increased gastric side-effects like vomiting, which reduces the absorption of the drugs in the bloodstream and increases the risk of drug resistance, said Dholakia.
Help during lockdown
There are still hospitals and clinics that are running with enough precautions, or by reaching out to patients through the phone.
The government-run Shatabdi Hospital in Mumbai’s Govandi, which has drug-resistant TB and Covid-19 cases, has been running its outpatient department without a break since the lockdown.
Run in a partnership with the international non-profit Medecins Sans Frontieres (MSF) has introduced many measures to prevent transmission of the infection — OPDs are scheduled on alternate days instead of daily, the waiting area has been shifted to the garden to maintain social distancing, patients and attendants are given masks, there are hand washing corners, volunteers are assigned to manage the crowd, and health workers screen patients for Covid-19 and ask for TB history.
All the staff members in contact with patients have to wear full personal protective equipment, which is uncomfortable in Mumbai’s hot and humid climate, according to Dr Vijay Chavan, chest physician, MSF.
In Uttar Pradesh’s Meerut, health workers on coronavirus duty have been simultaneously keeping in touch with registered TB patients on the phone to enquire if they have adequate drugs, and send medicines to their homes if they can’t visit the centre, said Ajay Saxena, senior treatment supervisor in the TB control department.
Dholakia has been consulting his patients over the phone, because he is over 60 years of age and at higher risk for Covid-19. He was also given the option of conducting virtual OPD.
“I have been checking patients’ X-rays, speaking to them over the phone, and instructing the health staff on their treatment regimen,” he said.