As he walked out of the Delhi High Court on Monday, Shyam Trivedi was still not certain if his teenage daughter, suffering from extremely drug- resistant tuberculosis or XDR TB still had a fighting chance or not. On his daughter’s urging, Mr. Trivedi took the Indian government to court for not considering the 18-year-old, wheelchair-bound teenager’s plea for two ‘miracle’ drugs called bedaquiline and delaminid.
Delaminid is not registered in India and is only available to patients on a case-by-case basis, if the pharmaceutical company holding the patent is convinced. Further, the Indian government has only 300 doses of bedaquiline available under a pilot project in five cities — giving it complete monopoly over its distribution and supply in the country.
And herein lies the problem: this 18-year-old and many other patients living in the rest of the country have been denied medicines due to restrictions put in place to avoid drug-resistance caused by over or indiscriminate use of antibiotics.
Highest incidence
Incidentally, the teenager’s last-ditch effort to save her life could end up saving millions more. According to the World Health Organization (WHO), India shoulders the maximum number of TB patients — 2.84 million people.
The father-daughter duo is fighting for the rights of thousands of tuberculosis patients to access the newly approved and strictly regulated bedaquiline. Mr. Trivedi is a government servant and mentions this to journalists straight off the bat — to ensure neither he nor his daughter is persecuted for taking on the government.
The Patna-based family realised Siya had tuberculosis in 2011 — the family believes that she got infected at school.
What has become a keenly-watched international legal battle, began with a simple prescription of antibiotics and an assurance from the doctor that she will be cured within nine months, Mr. Trivedi told The Hindu after Monday’s hearing.
Last resort
“It was a few months later that we realised she was resistant to the first line of drugs given to treat TB. The doctor then put her on a second line of drugs, without testing whether she is resistant or not. She failed the treatment again. The disease spread relentlessly,” he said. The only option left to the family was bedaquiline — the most effective drug in the arsenal for treatment of drug-resistant tuberculosis.
Also, the family has to prove to the Indian government that Siya is indeed suffering from XDR TB.
While her doctors, including global expert Prof. Jennifer Furin of the Harvard Medical School, have submitted to the court stating that the teenager does have XDR TB, the Indian government is not willing to believe it unless the family produces test results, which could take up to six weeks. The delay, her family and lawyers, believe will kill her.
“Everyday brings her closer to death,” he says.
Final hearing on Friday
“The court said that only Delhi residents can have access to the drug. Our other option is to approach the company to give us the drug on compassionate grounds — a process that could take another three months. My daughter is dying. I am hoping that the court will ensure that other TB patients do not suffer the same fate,” the father said, fighting back tears.
Final hearing in the matter will be on Friday.
(Names of father and daughter changed to protect identity)
