The king of maladies: Multiple ironies of tuberculosis
India boasts strong research expertise and technological and pharmaceutical capacity, yet lacks strong financial and political commitment from the government - to end the tuberculosis epidemic. Photograph: (Others)
"In Stendhal's Armance (1827), the hero's mother refuses to say "tuberculosis," for fear that pronouncing the word will hasten the course of his son's malady."
-Susan Sontag, Illness and its Metaphors
It is the dawn of the 21st century. As Madhu waits for her turn to take her medication at a DOTS center, she turns around and tells us, "The neighbors usually interrupt me and ask, where are you going? What shall I say to them? If by chance I tell them that I'm going to take TB medication, they'll never speak to me again. They won't even come near me. They will stay away from my kids as well. No parent wants their child to suffer from TB. My only wish is that it should not happen to anybody else. I try and maintain hygiene at home but still, this disease has affected me. Now, what am I to do?"
Madhu's only fault is that she was breathing at a wrong place and at a wrong time. After a few minutes of staring out of the decrepit window of the clinic, she turns around again and says, "For all you know they might be infected with TB too. They might be hiding it from me and you because of the fear of withdrawal and discrimination from the society."
TB is often imagined as a disease of poverty and destitute – of thin garments, waif bodies, unheated rooms, poor hygiene, inadequate food. We might even think of tuberculosis as a thing of the past but India has 23 per cent of the global burden of active tuberculosis patients and 27 per cent of the world’s “missing” patients, which includes those who may not have received effective TB care and could potentially spread TB to others.
As of 2007, over hundred thousand women suffering from tuberculosis in India were being abandoned by their families every year.
After adhering to a rigorous treatment regime of six and a half months without any relief, it was found that she is drug resistant
Babli was diagnosed with her illness in 2013. She was put on TB medication by some private doctors. Before prescribing a combination of drugs to her, she was not even tested (Drug Susceptibility Test) whether or not she is going to respond to these drugs. After adhering to a rigorous treatment regime of six and a half months without any relief, it was found that she is drug resistant.
"It is very easy to blame the patients that they mustn't have taken the medication. What we don't realise is that we still need to do a lot of research and development in order to understand the way drugs act on our body. Every patient responds differently to the same medication. As a patient, once you start vomiting after taking the medication, your natural instinct is not to take the next dose because you are so worried about the vomiting. We need to adopt a patient-centric treatment method. Unless we are able to ensure that each and every patient is well-informed about the illness and is taking the medication on time, we cannot think of eradicating this illness from its roots" says Blessina Kumar of Global Coalition of TB Activist.
Antibiotic resistance is a serious problem that compromises the ability to treat infectious diseases. It is the ability of microbes to flourish despite the presence of a drug that would normally limit its growth. Drug-resistant TB in patients has increased; the year 2015 witnessed a rise by 11 per cent from the previous year.
For the worst strains, known as extensively drug-resistant tuberculosis (XDR-TB), medical care can cost nearly half a million dollars just to treat, never mind productivity losses and the personal toll it takes on patients and families.
Although the sputum microscopy test has been trusted and used for the past 100 years and is inexpensive, it is highly labour intensive, which means that only a limited number of smear tests can be assessed a day. In addition, it only has a 60 per cent sensitivity rate. Modern GeneXpert testing machines can give the report in two hours, following which treatment can be started on the infected person but they are still getting imported by the Indian government. We only brought it in our country in 2010 and so it is not accessible to all the patients.
Every day tuberculosis is taking the lives of one thousand Indians, yet we don't seem to have a robust attitude when tackling it. Blessina Kumar puts it interestingly, "Imagine three jumbo jets are crashing every day. If that happened every single day, I wonder how will the government respond then? They would really be addressing it in a war footing. But we are losing the same number of people to TB and nobody talks about it."
One the one hand, there has been a delayed roll out of critical drugs, such a Bedaquiline and Delaminide which are essential to treat MDR and XDR TB, on the other, we have a highly unregulated TB drug market in India which is the leading cause of MDR and XDR-TB.
India’s response seems far from satisfactory on the issue of addressing this disease. It appears that the bacteria are developing resistance faster than the pharma is developing or discovering new antibiotics. The Revised National TB Programme (RNTCP) had asked for a budget of Rs.1,358 crore for the current financial year but received only 52 per cent of its demand.
While we continue striving over financial outlays, formulate new policies and put up with the stigma around it, TB is continuing to devastate multiple lives. One person can infect 60 other people in a year. This many-headed monstrous air-borne bacteria does not discriminate amongst the rich and the poor, neither does it pick and choose its carrier.
It threatens us all.
It is probably time for us to destigmatise tuberculosis in a manner that enables us to be more well-informed about the disease itself to be able to tackle it.