I recently attended a TB Centre Stage discussion organised by REACH TB (NGO) & USAID on Building an equitable & inclusive response to TB in India. It involved an open house discussion starting from the DDG- TB, Director USAID, an advocate from Madras high court, HIV TB partners including that of a Transgender social worker from John Hopkins, India & a Multi Drug Resistant (MDR) TB Champion cum TB survivor from Thiruvallur.
Anecdote:
I could feel the MDR TB survivor’s (young women) anecdote from the above discussion very dearly when she said that her ex-husband and ex-Mother in law mapped out a clear plan to file for divorce the moment they came to know she was diagnosed of MDR TB, though they both were the culprits for her not being able to complete the course 2 previous times when she was diagnosed with TB as they offered zero support because she was pregnant both the times. Let me share my personal story that happened in 2008 right after my internship & at the very early months of marriage, wherein I was diagnosed of TB with loculation 2 cubic meters empyema (2 liters of pus drained via Inter costal Drainage over few days) followed by operative procedures & was treated for the same for 6 months. My mother, a then top level central Government employee still talks high to me about her son-in law stating “he was there when you had TB, he will be with you supporting you always”. I am not sure if my Mother in law might speak high about me, had I assisted and supported my husband if he had been down with Tuberculosis. I am sure my duty as a wife would be discussed that time.
Points to Ponder:
Let me start with the question – Will you share with your friends & extended family if you are diagnosed with Diabetes/ Hypertension? Mostly yes. Will you share the news if you/ your spouse is diagnosed with fatty liver grade 2? 50-50 chance. Finally, will you share with your friends if your female adolescent child is diagnosed with Pulmonary Tuberculosis? Mostly not. TB is not only an infective disease but also a social disease like mental illness where in a third eye view on the need to provide rehabilitation (psychosocial) has to be thought about.
Lack of Social Media Awareness:
These days in social media people review all niche topics, including once a stigmatised talk of the society like feminine hygiene products, but, why are we not seeing anybody sharing their TB journey with the World? Celebrities have even shared their COVID journey, pregnancy journey, infertility journey but why none of them share their TB journey? “TB kills 3 people every minute worldwide & according to WHO, India has the World’s largest TB epidemic”. India’s TB incidence for the year 2021 is 210 per 100,000 population (note that our MMR is 97 per Lakh Live births in 2021). May be it reflects the negligence we show towards the disease.
TB infection (TBI) & TB Disease:
TB bacteria can live in the body without making one sick. This is called latent TB infection. TB bacteria become active if the immune system can’t stop them from growing, this is called TB Disease. People with active TB disease might be able to spread the bacteria to people they spend time with every day. Prevalence of TBI is so high (40%) among the Indian population that it is obvious that if we are diagnosed with a TB disease, it need not come as a shocker to any of us. Us being Health Care Professionals/ workers we are a higher risk (60 -70%) of TBI, yet if the infection which is already with in the body turns into an overt disease (TB disease) in us or our loved ones, we want to hide it or maybe we think that it’s really not necessary for others to know it, as if it’s important for others to know if we are diagnosed of DM.
Recommendations:
We have enough evidence based studies that our interns, PGs & staff nurses are at the highest risk of contracting the infection as they spend longest hours of a day in the IP wards. Printed Information, Education & Communication (IEC) materials on TB & preventive TB behaviour to alert high risk personnel similar to Hand washing practices & COVID protocols should be flashed everywhere to emphasis on the importance of wearing masks all the time, to double mask when they are entering TB wards, to destigmatize TB & those condemning the stigma. Even before COVID, doctors and nurses were dying of nosocomial TB & continue to succumb to it, why did we never ask for compensation? Are we taking life loss due to TB for granted? We need to talk!