Meera Yadav’s flat in Mumbai once felt like a prison, but it’s now a war room. For five years, Yadav barely left her second-storey home after being diagnosed with multi-drug-resistant tuberculosis (TB). Today the flat is where the 32-year-old coordinates her fight for better treatment and awareness of the disease.
“What TB patients suffer and the challenges they face has to be documented. As an activist I have to fight,” says Yadav, dressed in a T-shirt bearing the slogan “TB drug bedaquiline for $1 a day – better DR-TB treatment now!”
The slogan is important. India has the world’s highest number of multi-drug-resistant TB cases – where the disease is resistant to two first-line TB drugs – and Mumbai, the country’s densely populated financial capital, is a hotspot. Of the 48,232 recorded cases of multi-drug-resistant TB in India last year, more than 10% were registered in the city.
However, a large number of cases are going undiagnosed, and the high cost of drugs is hindering India’s chances of eliminating the disease.
“We’re winning sometimes,” says Dr Vijay Vinayak Chavan, from the medical NGO Médecins Sans Frontières clinic in Mumbai, which specialises in treating drug-resistant TB. “But we’re a little behind, most of the time.”
The World Health Organization calls the rise in drug resistance to TB one of the world’s most urgent and difficult challenges, requiring more effective treatments. The WHO said the number of people receiving treatment for drug-resistant TB fell in 2020, a casualty of the Covid-19 pandemic.
India, which has the highest burden of TB in the world, wants to eliminate the disease by 2025. Its national guidelines promise free tests and treatment, and specialist antibiotics for patients diagnosed with drug-resistant TB.
However, untrained doctors – particularly in the private sector, which treats 60% of the country’s TB patients – often fail to redirect patients towards these free services, leaving many people undiagnosed, receiving inadequate care, or dropping out of treatment regimens because of high out-of-pocket costs.
“There is a huge gap between what the guidelines say and what happens on the ground in terms of access,” says Leena Menghaney, a lawyer specialising in public health. “Patients are falling through the cracks, and some of them are losing their lives in that process.”
The Joint Effort for Elimination of Tuberculosis (Jeet) project, launched in 2018, aimed to bridge this gap by training private healthcare providers to direct patients towards the free national TB programme, and help find cases in high-burden communities. As a result, the number of registered TB cases across the country increased by 30% between 2017 and 2019.
“Because there is free diagnosis, because there are free medications and many facilities are there, the uptake of diagnostic services is improving,” says Dr Vaishali Venu, of the NGO Doctors For You.
Venu fears the new initiative may not be enough, though, without access to the right medicines.
All patients with multi-drug-resistant TB should be given bedaquiline, a relatively new antibiotic. However, data acquired from the public health department in Mumbai, where drug-resistant cases are steadily rising, showed that only half of patients in the city received it.
A big reason for this is price: a six-month course of bedaquiline costs the government about $350 (£290) a patient, because of a patent held by the pharmaceutical company Johnson & Johnson. Another recommended drug, delamanid, is patented by the Japanese firm Otsuka Pharmaceutical and costs $1,200 a head.
“The government’s response to this situation of a patent monopoly is just to ration it, to give it to as few people as possible,” says Menghaney, who recommends that delamanid is taken alongside bedaquiline to ensure a complete recovery without the risk of relapses and new drug resistance.
“By just offering bedaquiline in Mumbai, you could be driving bedaquiline resistance itself,” she warns.
Data from the MSF clinic in Mumbai showed a rise in multi-drug-resistant cases in people who had previously been treated with bedaquiline. This is alarming, says Chavan, because when it comes to severe cases, after bedaquiline “we don’t have any drugs left”.
Yadav was first diagnosed with TB in 2013, but the treatment she was given did not work and she became drug resistant. She lost a lung, and Yadav’s husband, fearing that their infant son would contract TB, kicked her out of the family home.
Yadav eventually recovered after receiving bedaquiline and delamanid for free at the MSF clinic.
Last year, Yadav, who now campaigns for better treatment, filed a lawsuit against the government, demanding that it override the patents ofthe two drugs, which it can do under a World Trade Organization agreement. In cases of extreme risk to public health, national governments can issue a compulsory licence allowing local drugmakers to produce cheap generics.
“If I had been given both drugs [at the beginning], maybe now my right lung would still be there,” she says.
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