At 33, Meera Yadav has one functioning lung. She battled extremely drug-resistant tuberculosis (XDR-TB) for close to six years, was isolated from her son, and discriminated against due to her illness...
But none of this deterred the patient-turned-activist from fighting for access to the right kind of drug – for those battling tuberculosis like her.
India has the most number of tuberculosis cases in the world – a disease that the country aims to completely eliminate in the next two years.
Two drugs – Bedaquiline and Delamanid – which have been added to the regimen to treat XDR-TB in India – and which changed Yadav's life are a game-changer in how India approaches the disease.
Yadav's is a story of hope, resilience, and how everyone must have the right to access effective drugs.
Lacking the Right Drugs
In 2013, after several months of illness, then 27-year-old Yadav was diagnosed with Multi-Drug Resistant Tuberculosis (MDR-TB). She started treatment at a private hospital, but soon found out that it was unsustainable for her family.
"I had symptoms like cough and fever for several months before I was diagnosed. I was first diagnosed with MDR-TB, but later it took a turn to XDR-TB. The initial treatment at a private hospital not only cost Rs 3 to 4 lakh, but I was not getting any better."Meera Yadav to FIT
She narrated, "In 2015, when doctors told me I have XDR-TB, I had no idea what it meant. I would visit DOT centres, and take around 15 tablets a day. But nothing happened. I would only feel worse. This was when doctors started suggesting that I remove my right lung altogether."
Support Absent When You're Social Ostracised
Not only did Yadav's health take a hit, she also lacked the psycho-social and mental health support from her immediate family and friends.
Yadav shares,
"At the time I was diagnosed, my son was four months old. I was completely isolated from him – because they did not want me to spread TB to him. I missed several months, if not years of his life – and it deeply affected me. I had to shift to my father's house to get better. When I had doctor's appointments, I would have to take myself."
She went on to add, "The drugs also caused my skin to discolour in a way that would make patches of my skin red or black. Everyone would ask me why I was looking like this, or what condition I had. No one would want to come near me. I also started isolating myself in the process and it was only humanitarian organisations like Médecins Sans Frontières that stood by me."
The lung operation too did not go as expected. Every 15 days, she had to change the intercostal drainage tube that was inserted to drain the accumulated fluid in her lungs.
How Life Changed After Bedaquiline & Delamanid
After several years of struggle, Yadav was able to access the World Health Organization (WHO) and US Food and Drugs Authority (FDA)-approved Bedaquiline and Delamanid – with the help of humanitarian organisations.
"This changed my life and the way my disease progressed. These drugs saved my life," Yadav told FIT.
In 2020, during the pandemic, Yadav and NGO Jan Swasthya Abhiyan filed a Public Interest Litigation with the Bombay High Court seeking directions to the government to allow the non-commercial production of Bedaquiline and Delamanid, which are essential for the treatment of MDR-TB.
Why Her Petition is Crucial
After the PIL was filed, two different pharmaceutical companies in India undertook the manufacturing of the drugs. These drugs were then given as donations to the government and used to treat patients.
"But with a high number of patients, the medicines were not available regularly – resulting in delays in treatment. So if the Centre authorises other manufacturers by giving them the patents, the shortage will be addressed,” says Yadav.
But there is also another TB drug that is being rolled-out. Developed by a non-profit organisation, TB Alliance, Pretomanid, prescribed as part of the BPaL regimen, includes two other drugs — Bedaquiline and Linezolid.
This drug is likely to cut down the treatment duration by more than half – from an estimated 18-24 months to about six months. The number of tablets required every day is also likely to be cut down significantly.
This would not only help with effective treatment, but is also a means to address the shortage. Since March this year, India has been facing bouts of shortage of TB durgs – a matter repeatedly being raised by healthcare practitioners, patients, and activists. Yadav has been one of them.
"TB is a curable disease. The more access people have to better and more effective drugs, the more it will do to eliminating stigma, and help people get better sooner."Meera Yadav to FIT
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