An 18-year-old girl has been fighting a legal battle in Patna to gain access to a new government-controlled tuberculosis drug, Bedaquiline. The drug, which was introduced in India last year, is only dispensed in five cities, at six pilot sites.
The girl had not responded to antibiotics drugs, so her family took her to New Delhi many times to try and get access to treatment with Bedaquiline. However, she was refused treatment because she is not a New Delhi resident. After a lot of back and forth, the National Institute ofTuberculosis and Respiratory Diseases in New Delhi said that they would need to take a test to see which drugs the girl is resistant to, before administering Bedaquiline. Unfortunately, the results of the test kept getting delayed, which is when the girl’s father Kishore Tripathi filed a case with the Delhi High Court in December, asking the government to administer the drug to his daughter.
“Every day of delay in treating my daughter is critical. This medicine is her right,” Tripathi said. “She is very weak, weighs 25 kg and is bed-ridden. She cannot move and can barely speak without getting breathless. She is deteriorating fast,” he said.
The girl has travelled 15 times to different hospitals in Delhi for treatment since 2014, and she was the one who convinced her father to file a court case.
While the national institute is saying that it is following WHO guidelines on Bedaquiline’s administration, health activists and doctors are saying that waiting for the test results is unnecessary, because it is already known that the girl is resistant to other TB drugs.
Dr Jennifer F Furin, from the Department of Global Health and Social Medicine at Harvard Medical School, provided a written testimony to the girl’s team, saying that she should have started Bedaquiline treatment in October.
“Additional delays … threaten her life and the effectiveness of this agent. It is unfortunate that there have already been so many significant delays in providing [Bedaquiline] to Ms Tripathi,” Dr Furin said in her testimony.
The international health community has criticised the slow rate at which India is making the drug available. According to the WHO, India has the most number of TB patients, and one of the highest number of drug-resistant TB patients in the world. Only 200 people have received access to the treatment so far. Furin says that at least 30,000 people should have received the drug based on estimates.
The Stop TB Partnership, which has made the drug available in India, through its donation programme, told SheThePeople.TV that they would like to see the girl win the battle against TB.
“We need to ensure that this new medicine is made accessible to all those in need as soon as possible, while ensuring systems are in place for adherence and monitoring of patients. For this purpose, the Global Drug Facility of Stop TB Partnership in collaboration with USAID and the manufacturer have offered Bedaquiline to the Government of India under a donation programme. We look forward to an early decision in this legal case and hope that the girl wins the battle against TB. We are also hoping that the Government of India scales up the access to Bedaquiline as quickly as possible.”
The court will convene again on Wednesday.