“Warriors”—read a WhatsApp group’s name. A message in the group, dropped by 22-year-old Suman Kumar Singh read, “I have taken 6570 tablets and I am yet to take 2600 more before I complete my course”. A resident of Supaul district in Bihar, Singh is one of the 70 members in the WhatsApp group. The common thread running between Singh and the rest 69 members of the group is a disease—Tuberculosis (TB).
Each member of the group is either a TB survivor or is presently undergoing TB treatment. The group facilitates people who are battling Tuberculosis with much-required camaraderie and support. The heavy medication sometimes plunges patients into depression—an aspect often overlooked. While sharing information on the disease is an ordinary practice in the group, information like “A drug-resistant TB patient has to undergo treatment for 2 years wherein they will need 250 injections and 15000 pills, that stacked up in a line would be as tall as a 30-storey building,” could leave an unsuspecting person startled.
If not more, treatment of TB is as much a cause of concern as the disease itself, and in India, the thorny issue took a turn for the worse when the coronavirus outbreak hit the country.
With compromised immunity, TB patients stand a higher risk of contracting Covid-19. When the coronavirus outbreak began Dr Lalit Anande, medical superintendent of Sewri TB hospital, was concerned about his TB patients, he said, “I thought all my TB patients will die, in fact, I thought we will be free from TB. Instead, we saw a decrease in TB patients visiting us due to the fear of going out and contracting Covid-19.”
Diagnosed with Multidrug-resistant TB (MDR) in 2017, Mansa Jadhav, a 21-year-old Pune resident, continues to struggle with Tuberculosis. She has now been diagnosed with pre-Extensively Drug-Resistant TB (XDR TB). While recalling her ordeal during the lockdown she said, “On the pretext of minor fluctuations in my Electrocardiography (ECG) reports, the hospital denied giving me injections vital for my treatment.” She suspects she was refused Kanamycin injections because of the unavailability of drugs during the lockdown. Jadhav tells she did not receive proper medication for three weeks during the lockdown.
Besides medication, her monthly test reports were also delayed. “I did not receive my test reports for five months during the lockdown despite submitting samples every month.”
Her problems worsened when on August 10 she tested positive for coronavirus. Jadhav recalls how she spent almost a month alone in a room without her family around. “I felt much lonelier because of coronavirus than I ever did due to Tuberculosis. I had thoughts of dying but found relief thinking if I die I will get freedom from TB”.
Priyanka Vishwakarma a TB patient since the age of 12 has spent 13 years of her life living with TB. The 25-year-old has been a victim of poor diagnosis and its detrimental effects leading to relapses. In 2019, Vishwakarma saw a relapse of TB after four years. This time diagnosed with pre-XDR TB. She said that she had to miss her routine tests in April because of the lockdown and her test results are still due even after four months. “I have not received the reports of my test which I submitted in the month of May. Usually, it takes three months for the reports but now it has been four months.”
For any TB patient, proper medication depends on the timely detection of the drug resistance level. Missing routine tests can lead to a higher drug resistance. Vishwakarma, who also lost her father because of TB in 2016 says, “I pray to god, this time, either end the disease or end me.”
Ashna Ashesh, a TB survivor herself, now works as a patients’ advocate with Survivors Against TB, a non-profit organisation that works to help TB patients. Ashesh recalls the lockdown period, “During lockdown, the number of queries rose in comparison to pre-Covid-19 days, during lockdown we used to get at least one request every day, seeking help for one or the other problem faced by the patients during the lockdown.”
She added, “I remember a TB patient from Lakhisarai district of Bihar who reached out to us. She belonged to an economically marginalized family and was getting treated in Patna, which is 100 km away from her hometown. Due to lockdown, she could not travel to Patna and thus missed her TB and HIV medication for a few days, she wrote to us and the we had to step in for her help."
Is the spread of TB under government’s radar?
Under a strict watch, India is adding more Covid-19 cases with every passing day. Meanwhile, the risk of silent spread of Tuberculosis sits under the nose.
Last month, on August 10 the single-day death toll due to coronavirus crossed the 1000-mark in India. On September 16, deaths reported on a single day, caused by coronavirus, stood at 1290—the highest so far. While the country and its healthcare system got occupied with tracking coronavirus-induced deaths, the staggering daily tally of TB-induced deaths got buried deeper. According to estimates from National Strategic Plan for TB Elimination (2017-25), a government programme that aims to make India TB-free by 2025, everyday 1400 Indians lose their lives because of Tuberculosis, which means TB kills about 4.8 lakh Indians every year.
Caused by Mycobacterium tuberculosis, according to World Health Organisation’s (WHO) 2019 report, TB is one of the top 10 causes of death worldwide and the leading cause from a single infectious agent, which means it ranks higher than HIV/AIDS. The same report ranks India at the top when it comes to TB caseload, accounting for 27 percent of the total cases reported worldwide.
The collateral damage of the coronavirus pandemic and the lockdown include underreporting of Tuberculosis patients.
On September 19, Rajya Sabha MP and Bharatiya Janata Party (BJP) leader KJ Alphons raised the issue of Tuberculosis spread in the country and said that the fight against TB has slowed down due to Covid-19 pandemic. During the Rajya Sabha session, Alphons emphasised on the need of “intensifying tracking of TB patients and treating them”.
In India, notifications of new cases rose from 1.2 million to 2.0 million between 2013 and 2018. However, even before Covid-19 outbreak, India accounted for 25 percent of the gap between the number of new cases reported worldwide and the global estimate of 10 million incident cases.
The apprehension that Covid-19 has undermined the fight against TB was reaffirmed when Dr K S Sachdeva, project director of the Revised National TB Control Programme (RNTCP) in a letter to state governments told that the country witnessed a 60 percent decline in TB notifications during the nationwide lockdown.
In August, the government outlined a rapid response plan to address the aggravating problem of Tuberculosis. The guidance note issued under the rapid response plan instructed hospitals to screen all TB patients for Covid-19, and all Covid positive patients for TB.
Besides impacting the diagnosis and treatment of Tuberculosis, the similarity in symptoms of both the diseases has also lead to increased stigma. “Due to Covid-19, coughing by my TB patients is leading to worse stigma because now people fear having a Covid-19 patient around them so TB patients are not coming out,” said Dr Anande.
While Covid-19 might be wreaking havoc on the plans to eliminate TB by 2025, Dr Anande tells that for years TB patients faced the problems and stigma that now Covid-19 patients are facing. “We now have everyone wearing masks which at one point of time TB patients would hesitate wearing due to the stigma attached to the disease.”
Both Covid-19 and Tuberculosis show similar symptoms such as cough, fever, and difficulty in breathing, and primarily attack the lungs. Dr Anande says, “For a long time, Tuberculosis deserved the kind of attention now Covid-19 is getting.”