This is Arun Singh’s story. He is a TB survivor and a public health professional.
I was a young physiotherapy student when my father died of tuberculosis (TB). I remember he was taken to a leading private hospital in Delhi – where he underwent innumerable diagnostic tests and was given medicines based on some vague diagnosis. Yet, no one diagnosed him with TB. Finally, it was at a government hospital where he was finally diagnosed. By then, however, it was too late and we lost him to a curable disease.
But this was not the last I heard of TB. It came back to haunt me. It began like any other cough. So I went to a physician who prescribed some medicines. My condition only worsened – until an X-ray revealed that the lower lobe of my left lung had collapsed.
This time TB didn’t daunt me. My training in medicine and public health had prepared me to address TB. With the right treatment and support from my family, I was able to defeat it soon. I also had the education to understand TB and the economic ability to afford and complete the TB treatment. Yet, as a public health professional, I know that thousands in India suffer from incorrect diagnosis and treatment. How do those without the support and sufficient knowledge survive TB? Especially, what happens to those who battle drug-resistant TB (DRTB)?
When I reflect on my family’s battle against TB, I realise that the first and foremost challenge is diagnosing TB. The public sector uses Sputum Smear Microscopy as the primary mode of TB diagnosis which misses 50% of all TB cases. The private sector, on the other hand, uses various techniques to diagnose TB – some of them used to diagnose latent not active TB. Hence, there is an extensive misdiagnosis. Moreover, early testing for drug-resistant TB (DR TB) remains negligible. This makes TB diagnosis significantly a challenging task.
Even if diagnosed early, treatment in the private sector where most Indians seek care is fraught with inappropriate TB treatment practices. The public sector offers standardised treatment, only. Often, it doesn’t test patients for drug resistance. This means, there may be a delay in diagnosing a patient with DR TB. Couple this with a toxic treatment, side effects, mental health issues, and completing treatment turns into a mammoth task.
What we often forget is that TB is also challenging due to poor awareness and the deep-rooted stigma. This stigma, which manifests both in the form of self-stigma as well as societal stigma, forces a TB patient to hide their disease and sometimes not seek care or complete treatment. Widespread discrimination at workplaces and other public spaces forces a patient into isolation. Our expectation from the patients merely to seek care and complete treatment is unrealistic.
There is also the challenge of costs. Since the private sector is profit-driven, the costs of TB diagnosis, drugs and treatment can be quite high. In the public sector where TB care services are offered free of cost, hidden costs such as those associated with hospital stays, review of x-ray results and travel are high. These challenges pose a serious economic barrier to accessing care and completing treatment. Then there are indirect costs due to loss of income. For example, daily wage earners may end up losing an entire day’s pay if they need to travel to a healthcare facility for a refill. TB induced poverty can push families into debt traps.
What Do Patients Need?
India needs a revision to its approach in addressing TB. We must start by creating increased awareness and reducing stigma. Early, accurate and free diagnosis must be made a priority. Also, Drug Susceptibility Test (DST) guided treatment is essential. India’s National Strategic Plan (2012–2017) for TB promises early treatment stratification guided by DST results. We need to comprehensibly implement these promises.
We also must engage communities, inform families and reduce stigma so that they can act as supporters to patients – ensuring they complete treatment free of challenges and stigma.
Perhaps the most urgent need is a partnership between the public and private sector and design models of care with other actors, including non-governmental organisations (NGOs) – so that every TB patient can access free diagnosis and treatment anywhere irrespective of income levels. This can play a pivotal role in scaling up treatment services.
India is changing and it’s changing fast. We need to take advantage of all advancements, to provide better treatments, outcomes, adherence and education. If we don’t, we risk affecting millions of lives slowing India’s hope for growth and development. Because making India TB free is making it free of suffering and poverty.