In a small, airless room in Dharavi, Owais sat chatting with his wife and two children. Outside, the famous rains of Mumbai beat down relentlessly on the thousands of tiny rooms that dot Dharavi.
“I hope it doesn’t flood,” said Owais’s wife as he recounted his journey fighting and surviving Totally Drug Resistant (TDR) TB. He spoke slowly, and in pauses, as he was overwhelmed with emotion while recounting memories of his struggle as one of the few survivors of the first documented cases of TDR TB in India.
While Owais’s story has a happy ending, not many in India have been as fortunate as him. Bedaquiline, a new transformational drug, saved his life when nothing else worked.
India has close to 1,00,000 cases of drug-resistant TB, most of which remain undiagnosed and untreated. So India’s state of preparedness to fight DR TB remains questionable. Most patients cannot access accurate diagnosis or affordable forms of treatment due to systemic barriers, stigma and affordability. Afraid that the public system will not deliver, over half of them seek care in the private sector. Over the years, by benign neglect and inefficiencies, the government has designated the private sector as the primary provider of TB care.
In turn, the private sector remains largely unregulated and often exploitative. It arguably also breeds drug resistance because of delayed diagnosis and inappropriate treatment. Patients often swing between the public and private sector but find little hope in their fight.
Recently the government announced that it would be introducing 500 rapid machines to diagnose TB and drug-resistant TB, significantly enhancing India’s ability to diagnose DR TB. There was a similar announcement about the use of Bedaquiline, the new promising drug for DR TB saying that India would receive 600 courses in the form of a donation from its manufacturer Janssen. Despite all this, many ask whether this is enough considering India’s growing crisis of drug resistance.
To comprehensively address MDR TB, India needs to take four critical steps — improve access to drug susceptibility testing by introducing testing for everyone; providing access to free and appropriate treatment; aggressively engaging the private sector, and working with patient communities to provide support through the treatment cycle.
Ideally, every district in India needs free, high-quality diagnostics. Access to these machines needs to be made available to everyone, especially private sector patients, free of cost. It is ethically unacceptable now that these tests procured with public money are not made available and accessible to every citizen. There should be a policy that allows access to these tests or drugs with a prescription from public/private sources.
A word about the government’s procurement systems. There is fear that the expensive rapid machines may become redundant if the cartridges are not procured on time. This is because the government’s procurement systems inspire little confidence if one is to go by the stock-outs of viral load kits or basic first line drugs in the government’s HIV programme. There must be forecasting experts who can look into orders being placed in advance.
It must be the same as far as the availability of Bedaquiline or other drugs is concerned. It is also important to ask why India is receiving only a few hundred courses of Bedaquiline, and in the form of donations. What will India’s plan to procure this in the future be? How will these be made available to patients who need it in the private sector? The rationale that government control will help avoid misuse is unacceptable as many in the private sector use drugs responsibly. They must also be allowed to access and prescribe this drug. Additionally, the government must clarify its estimate of the drugs required to treat DR TB nationwide and the procurement policy for them.
India’s TB programme needs a focussed and accommodative strategy of engagement with the private sector which includes trust and recognition of the private sector as a partner. There are experiments in Mumbai and Mehsana, Gujarat, which need to be studied and scaled up.
The engagement of patients and communities is perhaps the most essential but neglected aspect of India’s TB control efforts. We need patient advocates, community engagement and stigma reduction to remove barriers to early diagnosis and care. The government needs to move away from traditional paternalistic models of creating awareness and move towards creating participation from within communities.
Owais and I walked through the narrow lanes of Dharavi to my taxi. Hesitantly he asked me, “Who would be responsible for my death if I didn’t get this drug?” Who indeed is responsible when diagnostics and drugs remain inaccessible to thousands due to neglect? Who is responsible for the suffering, debt, poverty, poor health outcomes and deaths caused by systemic inefficiencies? It is time those in India’s health establishment provided us the answers as the most vulnerable have waited for far too long.
(Chapal Mehra is a New Delhi-based public health specialist.)