Nandita Venkatesan and Rhea Lobo

“Coronavirus patient bombarded with insensitive remarks, silly advice.” “Recovered COVID-19 patients have partially reduced lung functions.” “Suspected coronavirus patient quarantined.”

“Poor conditions of quarantine facilities come into focus in India.” “Officials begin contact-tracing of coronavirus patient.”

As Indians watch in shock the unfolding coronavirus pandemic, worry about their safety and financial security, and grumble about the ill-equipped healthcare system to tackle the rising incidences of the disease, for one community, the headlines like those above — hitting our newsfeed and social media handles on a daily basis — evoke an eerie feeling of déjà vu. For survivors of the deadliest infectious disease named Tuberculosis(TB), it is a ‘been-there-seen-that’ moment.

TB is spread from person to person through air. When people with lung TB cough, sneeze or spit, they propel the TB germs into the air. A person needs to inhale only a few of these germs to become infected. TB is killing a staggering over 1,300 Indians everyday.

India tops the list

India is the hotbed of the deadly infectious pandemic — the TB. According to the World Health Organization’s The Global Tuberculosis Report, 2019, the country continues to record the maximum number of people affected by TB and drug-resistant TB in the world. Drug-resistant TB — a dangerous form of the disease where the bacteria does not respond to the two most powerful anti-TB drugs — has been variously described as a ‘ticking bomb’ and a ‘grave health crisis’ by top public health experts. Moreover, TB is a disease that hits you in your most productive years — in the 15-59 age bracket.

Vaccine and R&D woes

Yet, this silent epidemic evokes little public outrage and is woefully neglected by scientists and researchers due to poor public funding. While the world talks about getting a vaccine within a year for coronavirus, the fight against TB is so pathetic that we continue to use a vaccine developed 100 years ago that has proven itself to be ineffective in preventing the disease (both the authors have had the BCG vaccine at birth, yet, still, got TB). A new drug was not developed for TB in 40 years.

Funding TB research and development is not seen attractive enough by many — primarily because the highest burden of the disease is in developing countries and not in developed nations. Unlike coronavirus that is hitting Europe and the US hard, TB is a forgotten disease in many parts of Europe — while awareness has improved to an extent in recent years, many from the developed world still live under the misconception that TB has been eradicated and is only part of history textbooks.

The diagnostic challenges with TB continue to create havoc with how the disease is dealt with. Diagnostic delays, particularly with extrapulmonary TB (it results when the bacteria affects other parts of the body like the spine, abdomen, brain, etc, and it is even harder to diagnose than normal TB due to the lack of scientific advancement in the area), leave those affected in a spiral of going from one doctor to other, in many instances from state to state, desperately trying to narrow in on the right diagnosis. While some are lucky enough to get the correct TB diagnosis on time, matters get complicated as one journeys through the susceptibility tests for scarcely-prescribed drugs. These tests help ensure that the right combination of medicines is given depending on the TB. Given that drug resistance has become a huge hurdle for those affected, many waste valuable time taking drugs that don’t work because the test is not done.

Isolation and stigma

People affected by TB know what it means to suffer from social isolation and stigma. The infectious nature of TB reinforces social stigma — there is a lack of awareness that one stops being infectious anywhere between two weeks and two months of taking the correct medicines. Many people affected by TB face social ostracization and stigma, from their own families and workplaces. People affected by TB lose not just their jobs or means of livelihood due to the illness, some lose their spouses and friends, too, due to societal misconceptions. There is little in the form of socio-economic support, barring a nutrition allowance provided by the government of India to the tune of Rs 500 a month ($6.7 a month) — which many don’t receive due to bureaucratic hurdles and lack of timely disposal of funds.

Top 10 causes of death (globally)

While TB is not as infectious as coronavirus, you cannot discount how deadly it is. TB is one of the top 10 causes of death globally, according to the WHO, alongside heart disease and stroke.

TB-related deaths don’t make it to television news debates and are relegated to the ‘inside’ pages of a newspaper, barring episodic events like World TB Day. Patients are treated as mere statistics in the ever-growing list.

Ironically, TB is still thought to be a poor man’s disease, which is far from the truth — the rich just hide it.

On World TB Day, and every other day of the year, the hope is that the world pays attention to the leading infectious killer in the world.

The authors were young when TB first upended their lives — Nandita was just 17 and Rhea was 22.

Nandita’s battle with TB started during her first year of college. Over eight years, she was diagnosed with intestinal tuberculosis, twice. This is a type of extrapulmonary TB that causes acute stomach pain, fever, vomiting, and rapid appetite and weight loss. In an arduous battle oscillating between life and death, she underwent six surgeries in a year in the abdomen, and endured multiple medicines, including month-long courses of painful injections. Just days after her 24th birthday in 2013, she became deaf caused by a vicious side-effect of an anti-TB injection. The side-effects of medications, the stigma associated with the disease and the sudden disability affected her ability to lead a normal college life, pushed her into acute depression and stole what should have been the best years of her young life.

Rhea, on the other hand, was afflicted with bone TB and lymphnode TB. She underwent three surgeries in one year, and was hospitalised four times in the same period. Rhea’s journey through TB went through a series of misdiagnosis due to a poorly managed healthcare system and she was given the wrong dosage of medicines with respect to her body weight, putting her at the risk of getting drug resistant. Her TB treatment was supposed to be for 12 months; it ended up being for 20 months due to poor management of the disease.

Today, Nandita is a journalist with a business paper and Rhea is a filmmaker specialising in gender and health. Together, they also run a voluntary network of women TB survivors called ‘Bolo Didi’ that supports people with TB and can be reached at [email protected]