Tuberculosis (TB) is not an easy disease to live with. As it turns out, it’s not easily diagnosed in India either.
At the 50th Union World Conference on Lung Health, which concluded in Hyderabad on Saturday, Nandita Venkatesan, a TB advocate and survivor from Mumbai, spoke for many of her kind when she addressed her audience with an impassioned plea. Ms. Venkatesan lost her hearing due to the side effects of TB drugs and now wears a cochlear implant.
“We have walked the difficult paths of this disease and mind you, we have survived. Our voices are experiences and our stories count. We are to be heard and we are to be listened to and acted upon,” she said. “You say, you know the signs of our disease, we say we know the pain of living with them. You say that diagnostics are hard and expensive to provide, we say that late diagnosis has destroyed our health and lives.”
The conference had other powerful moments. A large group of protesters, shouting slogans and carrying placards, disrupted the inaugural ceremony by taking over the stage to demand scaling up of injectable-free treatment regimens, affordability and access to newer drugs like bedaquiline and delamanid, and implementing universal drug-susceptibility testing. The protesters also urged the government to address the issue of rampant stockouts of TB drugs.
The protesters got all the participants to observe two minutes of silence for the Patna teenager who died last year after fighting a court battle to gain access to bedaquiline. “She didn’t live to see her 20th birthday. She belongs with Malala and Greta in the pantheon of teenagers who stood up for the principle of justice and rights,” the activists said.
Unaffordable drugs
The announcement of the price of the most recent anti-TB drug, pretomanid, has upset survivors and activists. Developed and registered by the non-profit, TB Alliance, pretomanid has been approved as part of a three-drug regimen called BPaL. At $364 for a treatment course of pretomanid, the cost of the BPaL regimen goes up to $1,040. “We are calling upon Mylan and TB Alliance to bring the price of pretomanid down much further,” Sharonann Lynch, HIV and TB Policy Advisor, Médecins Sans Frontières Access Campaign, said in a press statement.
The conference also saw pharmaceutical firm Sanofi announcing a 66% reduction in the price of rifapentine, a drug used to prevent TB. The Indian government is contemplating its rollout.
‘High registration fees’
Activist Ganesh Acharya, who attended the conference, said it was a great event that brought together all stakeholders. “Those who make the drugs, those who consume it and everyone involved in the process were all part of the event,” said Mr. Acharya. “But the high registration fees limited the participation from high TB burden and lower-middle-income countries,” he said.
Still, some important issues found a stage.
