09/03/2017 9:28 AM IST | Updated 13/03/2017 11:13 AM IST

'Thank God I Never Went For Treatment To The Government TB Program'

When systems fail.

Manasi Khade

It's still dark outside when Tejal and her mother set out from their small home in Vadodara to undertake the seven-hour journey to Mumbai's Hinduja Hospital. It's for Tejal's quarterly meeting with her doctors who are monitoring her treatment of extremely drug resistant tuberculosis or XDR-TB. As the women reach Mumbai's crowded Dadar station they are joined by Sagar, a family friend. They have arrived a day earlier before the appointment so that they can rest and reach the hospital by seven in the morning. "There are huge queues and long waiting times," says Tejal's mother.

Tejal is upbeat and excited as she talks about the possibility of finally defeating TB- a disease she has been battling since 2012. "I was a counsellor at a computer institute when I started coughing. It was accompanied by fever and chills. I went to the doctor who diagnosed it as pneumonia and began my treatment," recalls Tejal. She took pneumonia medicines for one month and felt better but suddenly the cough and fever began spiralling out of control.

If I reached a public space people would just leave. Or they would loudly say she has TB stay away, leave. Nobody realised I was non-infectious. Tejal, TB patient

She developed breathing problems and had to be admitted to the hospital. The doctors still didn't test her for TB. It was her uncle who took Tejal to another doctor who ordered an X-ray which revealed her TB. Dr. Shah, her new doctor, took a look at her reports and immediately started her TB treatment. She soon began feeling better but could barely cope with the side effects. "I couldn't eat anything, could not sleep and my stomach was on fire," remembers Tejal. The doctor did not apprise her about the side effects and not did he tell her what kind of TB she had, forget testing for drug resistance.

Eventually, Dr. Shah told them that the case was beyond his capacity. The family then went from one doctor to another. Everyone turned them away saying that the Tejal would not survive. She finally landed up in front of Dr. Dharmesh Patel, a well-known pulmonologist in Vadodara.

Dr. Patel looked at her test results and immediately sent her to Dr. Zarir Udwadia, a highly regarded private sector TB specialist. In 2013, when Tejal went to Hinduja she got her first drug resistance test and was diagnosed with XDR-TB. With the tests revealing extreme resistance patterns, Udwadia chose to put her on Bedaquiline—a new drug— obtained with great difficulty through a compassionate use program. Tejal responded to Bedaquiline well. "It wasn't as difficult a medicine to take. None of the side effects were extreme and I began to feel better." Her tests, six months later, revealed she was sputum negative for the first time in almost two years. For the first time, Tejal was hopeful of a TB-free future.

A few weeks later, however, her falling weight led to some alarm among the doctors and new tests revealed that the bacteria had returned. She was put on more expensive drugs. These she could barely afford. "The costs were close to ₹30,000 and we barely had any income," her mother says. Due to the illness she had given up her job and her mother and sister were working to make ends meet and afford the treatment.

The only time I went to take [government] medication, I was made to stand outside in the sun because I had XDR-TB... they gave me expired medication. Tejal

As she and her family recall the numerous challenges of fighting TB for my book (Nine Lives) they are often overcome. The costs of treatment were prohibitive. The family went under debt and borrowed from friends and relatives. Her elder sister had to stop her studies as a chartered account to fund Tejal's medication.

For Tejal and her family, help arrived from her doctors Dharmesh Patel in Vadodara and Zarir Udwadia in Mumbai. They didn't take fees from her for three years and have since been actively fundraising for her treatment. "The medicines are too expensive. Basically TB treatment is unaffordable for us. The costs make TB untreatable," Tejal's mother says quietly.

Tejal was ambitious before her illness. She was working as a data entry operator before TB brought her life to a standstill. As the duration of treatment grew, it didn't allow her to work and she had to give up her job. "I would get delayed at work sometimes and it was not possible for me to tell people that I had TB." She constantly felt fatigued and barely weighed 40kg.

As the news of her sickness spread in her community, discrimination became rampant. Neighbours barely spoke to them and people would comment when she had the energy to go out. "If I reached a public space people would just leave. Or they would loudly say she has TB stay away, leave," she says. "Nobody realised I was non-infectious. There is so much ignorance about this disease that it makes life impossible for the TB patient," Tejal says, remembering those days. A few would openly tell her that she was going to die her mother adds. However, this household of three women was resilient. "We had each other," Tejal says.

People are still so ignorant and petty. I have TB. How can it be such a big issue? Tejal

There was no shortage of naysayers. Many in her family suggested she should go for Ayurveda instead and stop going to the doctor altogether. This suggestion was oft repeated when Tejal had to undergo a surgery. "When you are sick everyone has advice and no one has solutions," her mother says.

Post -surgery, while admitted in hospital, the hospital staff would openly discriminate against her. "I was moved from the first to the last ward as if I was an untouchable. Every nurse would request her to be moved until Dr. Patel intervened," Tejal's mother remembers.

She had to take daily injections and eventually the cost of getting these from a health worker began proving expensive for Tejal and her family. So Tejal learnt how to inject herself through a port in her body. She has been doing so for almost six months now. Another consequence of her long-term medication was a considerable loss in hearing. Even today Tejal strains to hear what is being said and often loses the thread in conversations.

Tejal never went to the government program despite being unable to afford treatment in the private sector. It was impossible to navigate for her and her family, what with its long queues and endless waiting times. More recently, a part of her XDR medication has been provided by the government while some she continues to buy. "Thank god I never went to the government program. The only time I went to take medication, I was made to stand outside in the sun because I had XDR-TB. The health worker spoke rudely to me, implying that I had brought XDR-TB on myself by not adhering to medication. What's worse is that they once gave me expired medication," recalls Tejal explaining her distrust of the public sector program.

Tejal continues to be resilient and hopeful. She has now been sputum negative for six months and has started looking for a job. She is hopeful that she will find one soon in the insurance sector and restart her life. Though open about her illness, she has to hide it now because her elder sister has to get married. "People are still so ignorant and petty. I have TB. How can it be such a big issue?" she wonders.

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