TB wouldn’t leave her, still she fought breathlessly for the right to access drugs

Thirty-two-year-old Meera Yadav has half a lung, battled the most drug-resant kind of tuberculosis (TB), had her son taken away from her and lost her mother. Still, she is unputdownable, has turned activ and is crusading for generic versions of two expensive drugs that can treat her stubborn condition. She has lost years of her lifetime but is determined not to let others like her suffer the way she has.
Diagnosed in 2013, she didn’t have access to the right drugs
Meera is an XDR TB (Extremely Drug Resant Tuberculosis) survivor. Diagnosed with tuberculosis in 2013, she had to undergo treatment with older drugs, including injectables with limited efficacy and faced not only impaired hearing but also repeated treatment failure. She even had to surgically remove one of her lungs as it had collapsed due to TB. After several years of struggle, she was cured a regimen containing two new drugs – Bedaquiline and Delamanid.

“When I was diagnosed with XDR-TB in 2013, I began an extremely painful journey of being treated with medicines with terrible side effects that did not help me. Ultimately, I lost one of my lungs,” says Meera, who breaks down remembering how she was denied her rights as a mother. “I was heartbroken. Just four months after my delivery, my son was taken away from me, the family fearing he would contract TB. It was a terrible time. That year, my mother passed away due to TB. But what hurt most is throughout my son’s growing up years, I was never really allowed to stay with him and was constantly made to feel that I had the bimari (illness) due to my fault. Dumped in one corner of the small room in the chawl that I lived in with my husband and mother in law, my frustration levels were so acute that I used to lie miserably on the floor for days. One hopes to find a silver lining but things got from bad to worse and the nightmare just refused to end,” she recalls.
Getting the right drug took years
TB is caused a bacterium called Mycobacterium tuberculosis. The bacteria usually attacks the lungs but TB bacteria can attack any part of the body such as kidney, spine and brain. India has the highest burden of TB in the world and efforts are under way to eliminate the disease 2025. Bedaquiline and Delamanid are part of World Health Organisation (WHO) recommended all-oral treatment regimens for DR-TB that are safer, more effective and easier to take than older, more toxic drugs, including injectable medicines that can cause intolerable side effects, such as deafness and psychosis.

“Back then, these drugs were not available and I had no clue what XDR TB meant. In the initial days my husband, who stays in Bhandup, would take me to the hospital and collect free medicines from DOT centres. Despite completing the entire course of medication for 18 months, where I had to take 15 -16 tablets a day, my condition worsened and the right lung collapsed. A major surgery was planned and I remember taking expert opinion from a variety of doctors including top chest physician Dr Zarir Udwadia,” says Meera. That was some time in 2015.
The lung surgery that didn’t help
“I was told that I had bigdi hui TB (TB gone wrong) – At Thane, the operation was performed at a nursing home. At times, I felt like giving up. There seemed to be no full stop. Having taken high-powered medicines for years, I did not feel like looking forward to the next day,” adds Meera. Her l of woes did not end as a month after the operation, an intercostal drainage tube was inserted to drain the accumulated fluid in the pleural space. Every 15 days the tube had to be changed to prevent infection. However, after nine months, there were complications and she required another surgery. “I had had enough and was so tired that I told my father to send me to our native village in Banaras. then my relationship with my husband was under tremendous strain and it felt like nobody really wanted me around,” she says, the stigma of isolation welling up in her eyes.
The comeback despite the pain and stigma
“That was the time when counselling doctors and nurses really helped me. TB had weakened my body to such an extent that I suffered unending bouts of nausea despite the daily doses of saline injection over six months. Back to back surgery played havoc with my mind and such was the fear about the pus accumulating again that I would not sleep on my left side for a long time,” recalls Meera.
Even after enduring the physical ordeal, she went through intense humiliation brought on the stigma associated with TB. “I tried to reason with my husband and his family lovingly but my son was never allowed to stay with me. I felt very lonely,” she recalls. And though she found her own space, living with her father and brothers, she felt frustrated and lonely as she ran out of breath while climbing stairs.
New drug to the rescue
“After several years, I was able to access the newer drugs that saved my life and now am clear of TB. Now, to ensure that no one suffers these terrible experiences, I filed a PIL with fellow sufferers, seeking directions to the government to allow non-commercial production of the two drugs, Bedaquiline and Delamanid. The PIL was necessary as the drugs, patents of which are solely with the government, are not available regularly, resulting in a break in the treatment regime. If the Centre authorises other manufacturers giving them the patents, the shortage would be resolved,” says Meera.
Today this TB activ has completed her tenure with a government- funded project, Joint Effort For Eliminating TB, and is following up on PIL that seeks directions for the government to allow non-commercial production of two drugs, Bedaquiline and Delamanid, which are essential for the treatment of MDR-TB (more advanced and difficult to treat).
Why Meera’s PIL matters
Now, India is at a crucial intersection when it comes to the narrative of newer, more effective TB drugs. A new drug for TB is finally in the process of a global roll-out, including in India. Developed a non-profit organisation, TB Alliance, Pretomanid is the newest anti-TB drug, prescribed as part of the BPaL regimen, which includes two other drugs — Bedaquiline and Linezolid. Medical practitioners are hoping that this new drug in the BPaL combination will drastically cut short the treatment duration half (and more), and reduce the amount of medication an MDR-TB patient must take during treatment.
From a treatment duration range of 18 to 24 months, the BPaL is likely to bring down treatment time to around six months. The older “all oral drug regimen” included nearly 14 different anti-TB drugs for a patient to take every day. With BPaL, it is likely to take just three daily tablets. A shorter regimen, which is all oral and requires lesser doses per day, makes it easier for a patient to adhere and complete treatment. Meera understands the importance of the BPaL regimen and says a shorter regimen can be of immense value to the patient concerned. Clearly there must be a faster rollout of this regimen. “There will be zero stigma and no patient will ever be discriminated against,” says Meera. Life can be kind provide you fight for it.