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To Eradicate TB, We Must First End The Classist Indian Stigma That It's A 'Poor People's Disease'

Medicines can't cure prejudice and hypocrisy.

15/11/2017 9:03 AM IST | Updated 15/11/2017 9:08 AM IST
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SRINAGAR, INDIAN ADMINISTERED KASHMIR KASHMIR, INDIA - MARCH 23: A Kashmiri woman a patient of Tuberculosis shows her anti TB medicines which he takes daily at Kashmir's lone chest diseases hospital.

The first-ever WHO Global Ministerial Conference on TB is slated to take place on November 15-16 in Moscow. And with it, comes a lot of hope for the future -- one where we truly end TB. I am a TB survivor myself and figuring out how to wipe out a preventable and curable disease like TB is something close to my heart. And as someone who is sitting on the sidelines and watching health ministers from all over the world come together to talk about a disease that is one of the top 10 causes of death in the world according to the WHO, there is something that goes beyond medicine that I hope these ministers talk about.

And that is the people who are affected by TB. People like me. Or my next-door neighbour who told me she had TB a couple of weeks ago. Or my other neighbour who was like family to us -- an extremely bright, smart kid who I grew up with in another city -- who did not live past his 19th birthday because Multi-Drug-Resistant TB took away his promising life.

There is something that goes beyond medicine that I hope these ministers talk about.

A few weeks ago I released a film featuring Tuberculosis (TB) survivors, called End the Taboo – End TB, and the hardest part about making this film was finding and getting people to talk about TB on camera. I even had a few people who I filmed who ultimately backed-off from getting featured in the film because they didn't want their friends and family to know that they had TB. Too many questions to answer, they said. So this is where we stand -- we have a disease that is silently killing 1 person every minute in India, yet it is still taboo to talk about TB.

The Global TB report came out a few weeks ago. And there's little to cheer about for India.

India tops the list of new TB cases in 2016. The WHO report showed that up to 27.9 lakh patients were estimated to be infected in the country in 2016 out of which 4.23 lakh died in India alone. No badge of honour there.

The infection burden in China, a more populous country, is one third of India at 8.95 lakh.

The infection burden in China, a more populous country, is one third of India at 8.95 lakh. And to make matters worse, India along with China and the Russia accounted for almost of half of the 4.9 lakh, multidrug-resistant TB (MDR-TB) cases registered in 2016. Multi-drug resistant TB – a more stubborn bacteria and expensive treatment costs that goes into lakhs of rupees in the private sector.

And this is what we know. I shudder to think what we don't know.

While the Government has ambitious plans to eradicate TB by 2025, how do we get rid of disease where the community itself is silent? I experienced first-hand that silence, both in my experience of being a TB survivor and in making this film. And this silence is killing -- literally.

I was silent myself for four years after I got cured. And it all boils down to how this disease is perceived. The doctor who treated me, first asked me, "How did you get TB? It is a poor man's disease." That is the first slap on the face. And the first sign of stigma. The medical fraternity and society forgets all too quickly that TB is an infectious disease that is air-borne and can affect anyone - it doesn't matter if you are a rag picker or a multi-million dollar CEO.

The books may tell you that it is a poor man's disease. The truth is this -- the rich are just not talking about it.

The books may tell you that it is a poor man's disease. The truth is this -- the rich are just not talking about it.

Women are often made to feel like their future prospects of marriage will be affected – something I have a hard time understanding why. Both men and women face stigma at the workplace if colleagues find out about the TB diagnosis – too much ignorance. All these factors contribute to the silence.

You catch it like you catch a cold, yet it's best you don't talk about it because, hey, "What will people think?"

Here's what people should think: TB is a preventable and curable bacterial infection. That is precisely what it is. Nothing more, nothing less.

With 40-50 percent of people in India having the latent TB bacteria living in us, TB is a disease we need to reckon with – before it further spirals out of control. Like the strong, brave survivors who chose to stand up and be counted in my film, I request the others who have been affected by TB too make your voice heard -- we NEED your voices to end TB. And believe me, we are listening.

I was eating pizza at a popular pizzeria in Mumbai last night, when I couldn't help but overhear a conversation in the next table. A woman was talking about her friend who planned a vacation with her best friend to Budapest -– tickets in hand and accommodation booked -- when the plan got cancelled. Why? Because her friend was diagnosed with TB. The others at the table were wide-eyed when they heard TB. And this woman clearly repeated, "Yes, TB. You know, Tuberculosis".

We need to declare war against a disease that is inexcusably taking too many lives. And the first step is to start talking about it. Like those people in the next table did -- we got to start somewhere.

The opinions expressed in this post are the personal views of the author. They do not necessarily reflect the views of HuffPost India. Any omissions or errors are the author's and HuffPost India does not assume any liability or responsibility for them.

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