Thirty-two-year-old Meera Yadav has half a lung, battling tuberculosis (TB), the most drug-resistant type, if her son took her away from him and lost his mother. Still, she is undeterred, has become proactive and is battling for generic versions of two expensive drugs that can treat her stubborn condition. He has lost years of his life, but he is determined not to let others like him suffer in the same way.
Diagnosed in 2013, she didn’t have access to the right medications
Mira is an XDR TB (Extremely Drug Resistant Tuberculosis) survivor. Diagnosed with tuberculosis in 2013, she had to be treated with chronic drugs, including injections with limited efficacy and suffered not only hearing impaired, but recurrent treatment failure. He even had to surgically remove one of his lungs as it had collapsed due to TB. After several years of struggle, she was cured by a regimen containing two new drugs – bedaquiline and delamanid.
“When I was diagnosed with XDR-TB in 2013, I embarked on an extremely painful journey of treatment with terrible side effects drugs that didn’t help me. Eventually, I lost one of my lungs,” Mira says She breaks down as she remembers how she was denied her rights as a mother. “My heart was broken. Just four months after my delivery, my son was taken away from me, fearing the family would contract TB. It was a terrible time. The same year my mother died due to TB. But what hurts the most is that in my son’s growing up years, I was not really allowed to be with him and I was constantly made to feel that I had got bilari (disease) because of my fault. . I was lying in a corner of a small living room in the chawl with my husband and mother-in-law, the level of my desperation so intense that I lay horribly on the floor for several days. One hoped that a silver lining would be found but things went from bad to worse and the nightmare refused to end,” she recalls.
It took years to find the right medicine
TB is caused by a bacterium called Mycobacterium tuberculosis. The bacteria usually attack the lungs, but TB bacteria can attack any part of the body, such as the kidneys, spine, and brain. India has the highest burden of TB in the world and efforts are underway to eliminate the disease by 2025. Bedaquiline and delamanid are part of the World Health Organization (WHO) recommended all oral treatment regimen for DR-TB that is safer, more effective. And it’s easier to take than older, more toxic drugs, including injectable drugs that can cause intolerable side effects, such as deafness and psychosis.
“At that time, these drugs were not available and I did not know what XDR TB meant. In the initial days my husband, who lives in Bhandup, used to take me to the hospital and get free medicines from DoT centres. Despite completing the full course of medication for 18 months, where I had to take 15-16 pills a day, my condition worsened and my right lung collapsed. A major surgery was planned and I remember taking expert opinion from various doctors including top chest doctor Dr Jarir Udvadia,” says Meera. That was sometime in 2015.
Lung Surgery That Didn’t Help
“I was told that I developed TB (TB gone wrong) – in Thane, a nursing home was operated upon. At times I felt like giving up. It seemed like there was no full stop After taking high-potency drugs for years, I didn’t feel like waiting for the next day,” Mira adds. Her list of troubles didn’t end until a month after the operation, the fluid accumulated in the pleural space An intercostal drainage tube was inserted to prevent infection. However, after nine months, there were complications and she needed another surgery. “I’ve had enough and I was so tired that I asked my father to send me to our native village in Banaras. By then my relations with my husband were very strained and it felt like no one really wanted me around, The stigma of separation was rising in her eyes, she says.
Return despite pain and stigma
“That was when consultations by doctors and nurses really helped me. TB had weakened my body to such an extent that I experienced persistent nausea despite daily doses of saline injections for more than six months. Back to back surgeries wreaked havoc on my brain and the fear of pus re-accumulating was such that I would not sleep on my left side for a long time,” recalls Meera.
Even after suffering physical pain, she faced immense humiliation because of the stigma attached to TB. “I tried to reason lovingly with my husband and his family but my son was never allowed to stay with me. I felt very lonely,” she recalls. And though she found her place, living with her father and brothers, she felt hopeless and lonely because she would be out of breath as she climbed the stairs.
New drug to the rescue
“After many years, I was able to access the new drugs that saved my life and now I am free from TB. Now, to ensure that no one suffers from these horrific experiences, I filed a PIL with fellow victims seeking directions to the government to allow the non-commercial production of two drugs, bedaquiline and delamanid. demanded. The PIL was necessary as medicines, whose patents are entirely with the government, are not available regularly, resulting in hindrance in the treatment regime. If the Center authorizes other manufacturers by granting them patents, the shortfall will go away,” says Meera.
Today this TB activist completes her term with a government-funded project, Joint Efforts to End TB, and is acting on a public interest litigation calling the government the non-commercial use of two drugs, bedaquiline and delamanid. There has been a demand to give directions to allow production, which are necessary. For the treatment of MDR-TB (more advanced and difficult to treat).
Why Meera’s PIL matters
Now, India is at an important crossroads when it comes to the narrative of new, more effective TB drugs. A new drug for TB is finally in the process of roll-out globally, including in India. Developed by the TB Alliance, a non-profit organization, pretomanid is the latest anti-TB drug, prescribed as part of the BPAL regimen, along with two other drugs — bedaquiline and linezolid. Physicians are hoping that this new drug in combination with BPAL will reduce the duration of treatment in half (and more), and reduce the amount of medication a MDR-TB patient takes during treatment.
From a treatment period of 18 to 24 months, BPAL can reduce the treatment time to approximately six months. The old “all oral drug regimen” consisted of about 14 different anti-TB drugs for a patient to take every day. With BPAL, it is likely to take only three daily tablets. A shorter regimen, which is all oral and requires fewer doses per day, makes it easier for the patient to follow and complete treatment. Meera understands the importance of BPAL and says that a small diet can be very important for the patient concerned. Clearly there should be a rapid rollout of this arrangement. “There will be zero stigma and no patient will ever be discriminated against,” says Meera. Life can be kind provided you fight for it.