The teenager from Patna, who had fought a long court battle to access the highly controlled anti-tuberculosis drug bedaquiline, passed away in Mumbai last month. Chest physician Dr. Zarir Udawadia said on Wednesday that the girl was brought dead to Hinduja Hospital’s casualty department.
“It is really sad. She had tested negative, but there was so much delay in getting the medicines that her lungs were severely affected,” Dr. Udwadia said. “She was on oxygen support. She had a miserable end,” he said. Dr. Udwadia was speaking at the inauguration of the exhibition on 100 years of the great influenza at the Nehru Science Centre in Worli.
The teenager was suffering from extensively drug resistant (XDR) TB and had moved the Delhi High Court after she was denied bedaquiline. “She eventually had won the court battle and was directed to me for the medicine,” Dr. Udwadia, who was treating her with a combination of bedaquiline and delamanid, another new anti-TB drug, said.
Stephen Lewis, co-founder and co-director of international advocacy organisation AIDS-Free World, during his visit to Mumbai, had termed the girl’s case as a billboard for the failures of the Indian health system in addressing TB.
Controlled access
Bedaquiline is an anti-TB drug developed after a gap of over 40 years. It was granted accelerated approval by the US FDA in 2012. “It is a game changer, a highly effective drug. But it is impossible to access for patients in the country where it is manufactured,” Dr. Udwadia said. The drug is made in factories in Gujarat, but the Indian government has controlled its access citing a fear of catastrophic spread of resistance in the community if used without enough background, he said.
Activists have been demanding a wider roll-out of bedaquiline, however since January 2016, just over 270 patients in Mumbai have received it. The drug is supplied under a conditional access programme after each patient is evaluated.
Criticising the apathy towards TB patients, Dr. Udwadia said the Prime Minister’s “optimistic talk” about eradicating TB by 2025 or 2030 makes him amused and angry.
“TB has a long history, but in 50 years, the Centre for Disease Control decided to stop or cut funding for TB. The World Health Organisation, to its shame, dismantled the existing TB programme. We have failed as far as TB goes,” he said.
His wish list is to have new drug regimens for the therapeutically destitute, a new TB vaccine, political will, private public mix, and funding for TB treatment.
