Bedaquiline – a word, a drug, a ray of hope for an 18-year-old girl from Bihar. The teenager has been battling with a strain of Extremely Drug-Resistant (XDR) tuberculosis – but her woes don’t end there.
To wage a war against her disease and survive, she needs a specific drug called Bedaquiline, produced by Johnson & Johnson. But the drug is highly controlled and is only available in five cities in the country – Delhi, Mumbai, Chennai, Guwahati and Ahmedabad.
Supported by her father, she now wages a legal battle against the Indian government, to acquire the drug that could potentially save her life.
In a conversation with The Quint, her father describes the arduous struggle and their plans if the case doesn’t go in their favour.
Misdiagnosed From the Start?
They went to a government hospital when she was first diagnosed with TB in 2012. When the second-line of treatment began, her father claims the tests were not thorough. The treatment began without knowing if her disease was drug-resistant or drug-sensitive. It seemed to be working at first, but her health worsened soon.
After going back and forth for the next two years, the girl got an appointment with Dr Zarir Udwadia, a TB specialist at Hinduja Hospital in Mumbai, who recommended Bedaquiline.
Dashing Hopes With Contaminated Tests
The family contacted Lala Ram Sarup (LRS) TB Hospital in New Delhi – the government hospital at the heart of the lawsuit. A Drug Susceptibility Test (DST) was in order to see if she really needed the drug.
India is home to highly contagious and drug-resistant strains of TB, owing to the indiscriminate prescription of older anti-biotics, say medical experts. The use of Bedaquiline, therefore, is only reserved for cases that really require it.
The sputum sample was duly deposited at the hospital. Two months later, when the family returned for the DST report, they were allegedly told that the tests had become contaminated. They needed to take the tests all over again.
'She Gave Me Courage to Approach the Court'
“Who advised you to take the matter to the court? Was it your doctor?”
“No, it was my daughter.”
After the family was informed about the contaminated tests at LRS Hospital, it was the girl’s decision to knock at the judiciary’s door. Her father asked if that would make her healthy again – she said it might not, but it would set a precedent for others like her.
The family was lucky enough to have the support of Anand Grover of Lawyers Collective, who is representing them and is charging no fees – providing some relief to their mounting bills.
The girl’s weight has dropped to 24 kilos, she can no longer afford any delays in her treatment. She’s back home in Patna with her mother – who single-handedly takes care of her – while her father is in Delhi, to represent her in the battle she has decided to wage.
To provide some context to the case, in March 2016, 600 courses of the ‘miracle’ drug were given to six hospitals in these five cities. The Health Ministry’s plan was to gradually increase the accessibility of the drug.
But up till September 2016, this new line of treatment – which is the first in nearly five decades – has been given to less than 40 XDR TB patients. This is despite the fact that of the 70,000 multi-drug resistant TBs in India, at least 10 percent are XDR, according to WHO estimates.
Where Court Proceedings Stand as of Now
The case will come up for hearing again on Friday.
The hospital in its affidavit has said that the drug cannot be administered without proper tests, as there’s a danger of the TB-causing bacteria to become further drug-resistant and the disease may spread to the whole community.
The hospital has also opposed the opinions of Dr Jennifer Furin, an expert in treatment of TB, that the patient's chances of survival would be 80 percent if she is given the medication.
The father claims that the hospital is not being cooperative as the girl is not a native of Delhi – a city where the drug can legally be administered.
They’ve asked us to seek the drug on compassionate grounds. But that will take a minimum of three months. There are many hassles. We have to get a prescription from Dr Udwadia, all sorts of import forms and formalities are required. My daughter cannot survive that delay.
The girl in the meantime is hopeful. Her fight has become something much larger than just the prospect of her survival.
Her father says she’s researched all there is to know on the internet, about Bediquiline. It’s now up to the courts to decide the fate of her prognosis.
Editor: Rahul Sanpui