Tuberculosis, a respiratory disease caused by a bacterial infection, is one that completely consumes you and causes the patient to slowly waste away from the inside – so much so that it was actually called consumption.
It is the oldest known infectious disease in the world, and there is evidence of it killing people as far back as 9,000 years.
And yet, TB persists even today. About one-third of the world’s population carries the bacteria in some form, and every year, over a million people in the world die of TB.
What makes TB so pervasive? Why has treating and eradicating it been such an uphill battle?
A lot of it has to do with the complexity of the disease itself, but maybe some of it has to do with the changing perceptions that humans have had of the disease.
For instance, there was a time when the gruesome, violent, highly infectious disease was once called the ‘the lover’s disease’, the ‘romantic disease’ and people actually WANTED to have it.
Love, Hate, and Stigma
In 19th Century Europe, when the spread of TB was at it's peak and ripping through the continent, it also carried with it an odd appeal that took a stronghold in popular culture.
People associated TB with voracious creativity, a state of euphoria, and whimsical tragedy - perhaps, because many famous writers at the time like John Keats, PB Shelley, and the Bronte Sisters had it.
The gaunt, sickly look of a TB patient was even considered ‘trendy’. Women would lose weight, and use makeup to look paler and get red, flushed cheeks.
It was also entirely possible that people were drawn to this ‘romantic’ perception of a disease that slowly but peacefully kills you because people only saw TB patients out and about in the early stages of the disease.
While TB patients were isolated and quarantined in the later stages, not many people saw the misery and pain that patients went through in the later stages.
Not everyone held this view though. In India, there is no record of such romantic connotations, says Dr Rajib Dasgupta, Chairperson, Centre of Social Medicine and Community Health, Jawaharlal Nehru University. But there are records of stigma that date back to the 17th century.
"(In India) There's not really that socio- cultural construct that were barriers to TB treatment. Stigma definitely goes without saying. stigma comes in in many, many forms. And there's a lot of abundant literature on stigma."Dr Rajib Dasgupta, Chairperson, Centre of Social Medicine and Community Health, Jawaharlal Nehru University
Even today, stigma still keeps TB patients from getting timely diagnosis and in turn, treatment.
Why Is TB So Hard to Combat?
In 1882 Dr Robert Koch successfully showed that it was Mycobacterium tuberculosis - a bacterium that caused TB, and that it essentially had nothing to do with emotional sensitivity, creativity, or being ‘too passionate’.
The crackdown on TB was taken on with vigour. But, TB has not been easy to fight, even 141 years later in 2023.
Although the disease has plagued human civilisation for centuries now, medical innovation to counter it has been slow-moving and linear, says Vikas Panibatla, CEO of TB Alert India – a Non-Profit Organisation based in Telangana.
There are several reasons for this, not least of which is the nature of the illness itself.
For one, TB can hide sneakily in infected people
It can infect with little to no symptoms, or even remain dormant for years before the symptoms present themselves, explains Dr Dasgupta.
"TB is a very slow infection. So there's hardly any way of diagnosing TB early."Dr Rajib Dasgupta
This is known as 'latent TB'. According to Dr Dasgupta, up to 10 percent of those with latent TB go one to develop active tuberculosis years after being infected.
TB treatment is also very slow, and it can take up to months
"There have been efforts to shorten the treatment timeline, but even the so-called short-course chemotherapy, which we now have takes up to two months."Dr Rajib Dasgupta
This, on top of the social stigma, and cost, he says, makes adherence to the TB treatment programme very challenging.
"When you these adherence issues, then you have more resistant forms emerging, further complicating things. As drug-resistant TB is going up, that will add to the challenge," adds Dr Dasgupta.
Weak vaccine technology
"The vaccine has never been any major tool in addressing TB," says Dr Dasgupta.
"The vaccine is believed to protect children from certain TB of the neurological system of the brain. And it's believed is reasonably effective. But as far as adult TB goes, it doesn't really it doesn't really protect."Dr Rajib Dasgupta
Lack of public engagement
TB is shrouded in mystery to the layperson even all these years later.
"I still get asked if TB is still there. People don't know what symptoms to look out for, and that they could have it. Compare this to the HIV programme where they have actively engaged the public effectively."Vikas Panibatla, CEO, TB Alert India
Can India Eradicate TB by 2025?
In the 2017 Union Budget, the Government of India announced its plans to eradicate TB from the country by 2025. Experts argued that the goal was unrealistic to begin with, especially considering the sheer number of patients in India.
As of 2021, India had an estimated incidence of 2,590,000 million cases of TB, at a rate of188 per 100,000 population, according to data collected by the World Health Organisation, and the government's National Tuberculosis Elimination Program.
Considerable progress has been made, but "'elimination', and 'eradication' are such 'all or nothing' terms. You either achieve it by a certain date, or you don't achieve it," says Dr Dasgupta.
"The date gets pushed more and more, and challenges like funding, support etc continue to mount."Dr Rajib Dasgupta, Chairperson, Centre of Social Medicine and Community Health, Jawaharlal Nehru University
Some of the momentum built since 2017 also, unfortunately, saw a decline in the COVID-19 pandemic years.
"That was a major disaster for the TB programme," says Panibatla. "I think we have gone ten years back on the momentum we had built."
He says, at the time everyone was focused on COVID, and when people got symptoms of respiratory illness, they tested for COVID. As long as it wasn't COVID, they 'didn't bother testing for TB'.
"As a result, from 2019 to 2020 there was a huge drop in TB testing and diagnosis. It gradually picked up in 2021."Vikas Panibatla
Moreover, many healthcare workers that were dedicated to TB were recruited for COVID duty at the time. "So, even if I wanted to go for a TB test, there wasn't a person to do it," adds Panibatla.
The lockdowns, he adds, also majorly restricted access to testing centres, and medication.
Since 2022, the programme has somewhat recovered. "It's nice that the government is being more proactive with the TB program now", says Vikas, adding, "but there's a lot more that needs to be done.
Dr Rajib Dasgupta says that elimination is not possible merely with treatment, and that all the heterogenous determinants of the TB crisis would have to be ironed out.
This includes, diagnostics, routine testing, spreading awareness, meeting nutritional needs of TB patients, and addressing antibiotic resistance.
Vikas Panibatla, adds, the private sector must be engaged more effectively in Government led TB programs.