Even as the pandemic raged, 31-year-old Meera Yadav, shunned by her family and separated from her eight-year-old child, fought a different battle in 2020. Yadav, a tuberculosis (TB) survivor, filed a public interest litigation in the Bombay High Court, taking the Indian government to task for failing to provide crucial TB drugs to patients.
In 2018, when Yadav was struggling with end-stage TB, the only thing that helped her was a combination of two drugs, bedaquiline and delamanid. But getting your hands on them is a near-impossible feat; India’s central government tightly controls their distribution.
The drugs are the first of their kind in 40 years that could cure patients with life-threatening drug resistant TB. And both drugs’ production is monopolised by big pharma. Janssen Pharmaceuticals, owned by Johnson & Johnson, makes bedaquiline, and Japanese drugmaker Otsuka makes delamanid. And they’re priced at levels beyond the reach of the Indian government—bedaquiline, for instance, was once sold for $30,000 in high-income countries, $3,000 in middle-income countries and $900 in low-income countries. Their patents expire expire BusinessLine Come 2023, generic companies will be able to manufacture anti-tuberculosis drug Bedaquiline: Janssen India Managing Director Read more only in 2023.
That’s why the Indian government had been getting by on donations donations The Ken How charity is fuelling a superbug in India Read more of the two drugs. Between 2015 and 2019, Janssen donated a total of 20,600 courses of bedaquiline, while India got 400 courses of delamanid from Otsuka. And then in 2019, the donation programme ended. Countries had to actually buy the drugs.
Despite prices coming down since then, the two drugs are still unaffordable in India. The Ministry of Health and Family Welfare (MoHFW) has been paying up to $360 (Rs 26,604) for a six-month course of bedaquiline and $1,237 (Rs 91,414) for each course of delamanid for the same period.
A slew of Right to Information (RTI) replies accessed by The Ken reveal that procuring these drugs has been a Sisyphean exercise for the Indian government. Between the order and delivery of bedaquiline, there’s a whole year’s worth of failed negotiations. Efforts to boost local production of delamanid haven’t borne fruit either. Janssen, Otsuka, and the government have been at loggerheads, trying to arrive at a cheaper selling price, but to no avail.
Consequently, India has been ‘rationing’ these drugs, carefully tailoring treatment guidelines according to availability, with patients forced to suffer the consequences.