When Nandita Venkatesan, a tuberculosis (TB) survivor, received a call from her lawyer at the India Patent Office on March 23 rejecting an application by Johnson & Johnson to extend its patent on anti-TB medicine Bedaquiline, she couldn’t hold back her tears. The Mumbai-based data journalist, along with fellow survivor Phumeza Tisile from South Africa, had filed the patent challenge in February 2019. The decision paves the way for Indian manufacturers to produce much cheaper, generic versions of the life-saving drug which can reduce treatment time to six months.
“I am neither a patent lawyer nor is Bedaquiline going to benefit me. My treatment is over but at least for other people who are going throughthis, the road ahead could be easier,” says 33-year old Venkatesan who got the disease twice. First in 2007 and then in 2013. The second was longer and more painful. At 23, an injectable drug called Kanamycin, used to treat her reinfection, took away her hearing ability.
Though the incidence has dropped (225 per 100,000 in 2015 to 194 in 2020 as per the TB India 2023 report), mortality reduction is behind targets. In such a scenario, the role of survivor-activists like Venkatesan who are leading the way in ushering in a new era of awareness and advocacy is crucial. One of them is 41-year-old Ganesh Acharya. Before Acharya turned 21, he was already inflicted with pulmonary TB twice while undergoing treatment for HIV. From 2001 to 2006, he was met with a litany of setbacks: wrong diagnosis, malnutrition, reinfection etc. “I did not have access to proper diagnostic facilities. I could not afford private care. I could not even walk properly. In my late teens, I weighed 21 kg. The doctors would refer me to pediatric care thinking I was 12 years old,” remembers Acharya. People with HIV are 25 times more likely to develop TB. When Acharya realised how people from low-income backgrounds hardly have a voice in the TB prevention discourse, he plunged into activism. He has filed pre-grant patent oppositions for several drugs. “We want medicines. We are dying here. God save us…F*@#ing patents. F*@#ing monopolies,” he had thundered at a global conference on TB in Hyderabad back in 2019.
“The scientific evidence is quite encouraging today with respect to new medicines. In four months, it is possible to treat drug-sensitive TB. I can only hope we can break out of patent extensions and reduce drug distribution disparities between the global north and south. Our government needs to buy these medicines in bulk,” adds Acharaya, who currently works extensively with TB cases in more vulnerable categories including drug addicts and sex workers.
It’s not just access to cheaper medical treatment that TB survivors are fighting for. A key aspect of their battle is also to fight the stigma attached to the disease. A community-based survey conducted in 30 districts in India reported that 73% had a stigmatising attitude toward TB patients. It ranges from myths that all forms of TB are contagious to patients also being susceptible to AIDS. “When people say they have cancer, there’s a lot of empathy. But with TB, that’s still lacking,” says Vijeta Sharma, a survivor. Sharma was 23and in the last semester of her graduation when she started to feel ‘something wrong’ in her body. Despite being a medical student, it never crossed her mind that she could be suffering from TB due to lack of awareness. It was only when she started coughing blood that she got an X-Ray done and found she had the disease. However, no further tests were done to determine whether it was MDR or something else. Even as she dropped out of college for six months and continued to take the prescribed medication, her condition worsened. She was diagnosed with MDR only two years later and the line of treatment was changed. Despite being bed-ridden for months at a stretch, she completed her treatment in 2017 and was able to finish her education through distance learning a year later. However, she says, greater access to information would’ve definitely helped.
Learning from her experience, she decided to start a WhatsApp group for over 60 to 70 TB patients where she answers queries. Several other TB survivors today are sharing their experiences to help others. ‘Survivors Against TB’ is one such group of advisors. Himanshu Patel, a member, says the community helped him deal with psychological issues while he was undergoing treatment.
Having recovered, he now shares his experiences on Instagram and YouTube, where TB patients across India reach out to him. In fact, the story of another member of the group who had finished a marathon on active treatment encouraged him to push his own limits. “After 13 months of efforts and one failed attempt, I finished the 100-km ultra marathon in 18 hours and 25 minutes,” Patel says with a sense of pride.
“I am neither a patent lawyer nor is Bedaquiline going to benefit me. My treatment is over but at least for other people who are going throughthis, the road ahead could be easier,” says 33-year old Venkatesan who got the disease twice. First in 2007 and then in 2013. The second was longer and more painful. At 23, an injectable drug called Kanamycin, used to treat her reinfection, took away her hearing ability.
Though the incidence has dropped (225 per 100,000 in 2015 to 194 in 2020 as per the TB India 2023 report), mortality reduction is behind targets. In such a scenario, the role of survivor-activists like Venkatesan who are leading the way in ushering in a new era of awareness and advocacy is crucial. One of them is 41-year-old Ganesh Acharya. Before Acharya turned 21, he was already inflicted with pulmonary TB twice while undergoing treatment for HIV. From 2001 to 2006, he was met with a litany of setbacks: wrong diagnosis, malnutrition, reinfection etc. “I did not have access to proper diagnostic facilities. I could not afford private care. I could not even walk properly. In my late teens, I weighed 21 kg. The doctors would refer me to pediatric care thinking I was 12 years old,” remembers Acharya. People with HIV are 25 times more likely to develop TB. When Acharya realised how people from low-income backgrounds hardly have a voice in the TB prevention discourse, he plunged into activism. He has filed pre-grant patent oppositions for several drugs. “We want medicines. We are dying here. God save us…F*@#ing patents. F*@#ing monopolies,” he had thundered at a global conference on TB in Hyderabad back in 2019.
“The scientific evidence is quite encouraging today with respect to new medicines. In four months, it is possible to treat drug-sensitive TB. I can only hope we can break out of patent extensions and reduce drug distribution disparities between the global north and south. Our government needs to buy these medicines in bulk,” adds Acharaya, who currently works extensively with TB cases in more vulnerable categories including drug addicts and sex workers.
It’s not just access to cheaper medical treatment that TB survivors are fighting for. A key aspect of their battle is also to fight the stigma attached to the disease. A community-based survey conducted in 30 districts in India reported that 73% had a stigmatising attitude toward TB patients. It ranges from myths that all forms of TB are contagious to patients also being susceptible to AIDS. “When people say they have cancer, there’s a lot of empathy. But with TB, that’s still lacking,” says Vijeta Sharma, a survivor. Sharma was 23and in the last semester of her graduation when she started to feel ‘something wrong’ in her body. Despite being a medical student, it never crossed her mind that she could be suffering from TB due to lack of awareness. It was only when she started coughing blood that she got an X-Ray done and found she had the disease. However, no further tests were done to determine whether it was MDR or something else. Even as she dropped out of college for six months and continued to take the prescribed medication, her condition worsened. She was diagnosed with MDR only two years later and the line of treatment was changed. Despite being bed-ridden for months at a stretch, she completed her treatment in 2017 and was able to finish her education through distance learning a year later. However, she says, greater access to information would’ve definitely helped.
Learning from her experience, she decided to start a WhatsApp group for over 60 to 70 TB patients where she answers queries. Several other TB survivors today are sharing their experiences to help others. ‘Survivors Against TB’ is one such group of advisors. Himanshu Patel, a member, says the community helped him deal with psychological issues while he was undergoing treatment.
Having recovered, he now shares his experiences on Instagram and YouTube, where TB patients across India reach out to him. In fact, the story of another member of the group who had finished a marathon on active treatment encouraged him to push his own limits. “After 13 months of efforts and one failed attempt, I finished the 100-km ultra marathon in 18 hours and 25 minutes,” Patel says with a sense of pride.
