Priya (name changed), a teenager from Patna, could be any one of us. Infected by India's most common disease, tuberculosis (TB), her fate is being determined by a group of government doctors who are denying her one of the few drugs that could save her life—bedaquiline. Eventually in desperation, her father, a government servant has approached the Supreme Court to instruct the doctors to allow her access to this drug.
Her story is a textbook case study of what thousands of Indians affected by drug-resistant TB (DR TB) face today—suffering, desperation and imminent death. These patients are either dependant on a bureaucratic and overburdened public health system or an exploitative private one. Their choices are few if any at all.
Priya's only hope is bedaquiline—the government has 600 courses, of which almost 400 are unused. Many activists think that these courses will eventually expire. What could be more criminal?
Priya's was first detected with TB in 2011 and sought treatment in the private sector where she was treated with the first line of TB drugs. This treatment failed her and the family took her to a government hospital where she was diagnosed with multi drug-resistant TB.
The government's MDR TB treatment also didn't work and eventually the family came to Delhi where she was diagnosed with extremely drug-resistant TB and a new treatment was started. It failed as well and she turned sicker, with numerous trips in and out of hospital. Her doctor at India's largest TB hospital in the end termed her incurable and ironically recommended Ayurveda!
Sitting in his one-room house in Dharavi, on a rainy Mumbai morning, Owais, India's first patient to be put on bedaquiline once asked me—"Who would have been responsible if I didn't receive this drug?" In this one question he sought the answer that most of the TB-affected in India want to know: Do their lives matter?
When one examines the number of unnecessary TB deaths the answer is apparent.
Owais was lucky to have received this drug through Hinduja, the country's leading TB hospital under the care of Zarir Udwadia. Priya has been recommended bedaquiline by Udwadia. She is young girl, determined to live even though the system and its red tape is doing everything not to let her. She is affected, like Owais, by the most severe form of TB that remains untreatable. Her only hope is bedaquiline—the government has 600 courses, of which almost 400 remain unused. Many activists argue privately that these courses will eventually expire. What could be more criminal? What could be more inhuman?
There is more. Despite evidence that bedaquiline is showing excellent results among drug-resistant TB patients globally, India is only allowing its use through the public system to the most extensively drug-resistant TB patients as a last resort. Here too, as Priya's case illustrates, the pre-qualifications are daunting and often designed to curtail access. What are the reasons she cannot get bedaquiline? For starters Priya is not from the state where the drug is currently being administered. The drug is currently only available in hospitals in six cities because the patients on it need to be monitored. How can that be a criterion for denying someone a drug that might save them? Surely monitoring can be done by a local doctor if we wanted?
India must understand that curtailing access to drugs is not the answer to controlling resistance. The answer is preventing resistance.
After Priya's father filed the case seeking access to bedaquiline, the doctors within the government system called for an emergency meeting and came up with an even more bizarre solution. They suggested she should continue her treatment under Zarir Udwadia and asked him to procure the drug for her. This while the government had 400 courses of the same drug lying with it. They also asked for yet another drug susceptibility test to prove the need for bedaquiline access.
Undoubtedly Priya's case is a landmark one because it will pave the way for access to bedaquiline for other patients, but not without considerable cost to her. Will it end the bureaucratic nightmares that the ordinary citizens will have to face in accessing this drug and another drug known as delamanid? Probably not.
What then are the solutions? Considering India's growing drug-resistant TB crisis, the government urgently needs to scale up its bedaquiline access not just as a last resort but to all DR TB patients that need it. Those responsible for administering this drug need to consider making restrictions less prohibitive. The geographical restrictions on these drugs need to go and more convenient systems of monitoring must be created. More importantly, those that restrict access to this drug need to be made accountable. The ideal outcome is a government policy that is flexible and accommodating and helps those most in need—TB patients.
The government is currently drafting its five-year TB plan. This plan should have a clear policy on bedaquiline access in the present and on expanding access to more patients in the future. Finally, India must understand that curtailing access to drugs is not the answer to controlling resistance. The answer is preventing resistance. This is only possible if we make drug susceptibility testing a norm, and access to the right treatment easy and affordable. Until then, India will continue to create a drug resistance crisis that will kill more Indians than any other disease or terrorist problem will.