Out of 5,000 daily deaths globally because of Tuberculosis, India accounts for 1,400. Two deaths occur every three minutes.
Quint Lens meets champions of the disease from Govandi, Mumbai – a slum with a very high concentration of TB patients. Through PATH’s care-and-referral networking project, these patients receive free medication and X-rays, counselling and weekly field visits by NGO members who check up on them and phone alerts about medication and hospital visits due.
Stigma Lives On
Five minutes into waiting for 23-year-old Saba at her home in Govandi’s slums, she calls. Her in-laws are arriving early in an hour instead of later at lunch. She can’t be seen with us because they can’t know she had Tuberculosis.
Nine months ago, Saba noticed a knot in her neck. She had only heard of coughing as a sign of TB, so when she went to the doctor and finally got her reports that she had TB, she was shocked. Young and ambitious, she wasn’t ready to give up just yet. She followed her six-month treatment course to the letter, stayed in touch with her field coordinator from a PATH-affiliated NGO regularly and paid extra care to her diet. But it wasn’t easy.
At home, I took my medicines secretly. I hid them in the cupboard. I only picked up my course for one week. And two days before the weekend, either my husband or someone from my home came and gave me my next course. My in-laws have a narrow, negative mindset, that’s why I didn’t tell them. They won’t understand. They’ll treat me as untouchable. But my husband knows. I told him 15 days before the wedding and I was fine if he chose to cancel the wedding then. Luckily, he didn’t.
Saba is a commerce graduate and had dreams of becoming an air hostess with Kingfisher Airlines, till she got married. “Though I’m thankful for a supportive husband, this has been my biggest regret about getting married. Now, even Vijay Mallya has shut shop and run away,” she laughs nervously as her eyes catch the light.
A Financial Burden
50-year-old Abdul Jabbar knows a thing or two about TB and how to fight it. He has being diagnosed with it four times now and each time has managed to beat it, despite acute financial crisis.
Abdul Jabbar’s wifeThe first two times we went to a municipality hospital to get treated but the third time we went to a big private doctor. We spent so much money there. Per month, we spent Rs 2,000 on medicines and then the doctors’ fee after that, at least. There were times when we didn’t have money for medicines, so we would cut from our house budget, but never compromise on his health.
Abdul has been a tailor since he was 12, except now he doesn’t have the energy to work. His son is the only earning member of the family, feeding seven mouths at home. His two daughters are high-school dropouts because he couldn’t afford sending them to school with all the extra TB costs: “We simply don’t have the capacity.”
But what does 20 years of TB and medicines leave behind?
I don’t have TB now but my one lung is completely damaged, so there are other things I have to handle. If I walk or climb stairs, I have to catch my breath and it hurts. If I put in a day’s work, I get fatigued by the evening, even feverish. My job has suffered because of this.
A Support System Goes a Long Way
In a tiny lane in Govandi, a hole in the wall gives shelter to Urmila and her family of five. When she begins to recount her story of conquering TB, she sounds like a champion. She even told her relatives, friends and neighbours. “It’s better for everyone to be careful if they know. I told everyone close to me and properly followed my treatment without missing a single day and rested a lot. The doctor told me that if you miss even a day, you risk adding six months of medication.”
But she wasn’t always so sure. When she found out she had TB nine months ago, she was in denial. She went on the defensive against doctor’s orders and refused to separate her food and water from her children’s. She knew little to nothing about TB and the added monthly cost was getting too heavy to carry with them having to borrow money before each doctor’s appointment.
Her husband, then, stepped in.
Urmila’s husbandWhat’s there to be scared about? I told her it’s just a disease and people get it all the time. She just needed to eat and drink properly, have her medicines on time and trust that money will come like it always have. We made sure she had them on time. When I left for work, I called her everyday to ask her if she’d have them. But I think dawai se dua zyada kaam karti hai. All of us encouraged her to take care, didn’t make her feel untouchable. No medicine would have worked if her morale had shattered.
Urmila followed his lead and soon gained enough confidence in her progress to shirk away her stigma against TB. Now, she doesn’t mind talking about her experience with the disease if it means it can help someone get or continue their treatment. When asked what she would say to spread awareness about TB and its cure, she flashes a proud smile and says, “I’m a living proof. What else?”