‘Wrong Reports, Treatment Left Me Weaker’, Recounts a TB Survivor

(This piece is an abridged extract from the book Tuberculosis - India’s Ticking Time Bomb: The Survivors’ Manifesto (Editor Chapal Mehra). The author is a contributor to the volume.)

(Debashree Lokhande is an XDR (Extensively Drug-Resistant) TB Survivor. She had a less than 10 per cent chance of survive but defeated the disease to live a normal life. She is part of an advocacy group ‘Survivors Against TB’.)

(FIT will be bringing you stories of survivors in the lead up to World Tuberculosis Day, 2018.)

I am an architect who contracted TB six-and-a-half years ago in Ahmedabad. We still have not been able to determine whether it started out as Drug Sensitive TB or its dangerous cousin, MDR (Multi-Drug-Resistant) TB.

When I developed a persistent cough and sudden extreme fever, the doctor suspected a viral infection. He also asked for a chest x-ray.

The x-ray gave no exact diagnosis, although the radiologist did make a prophetic statement: ‘You’re going to be taking medicines for a long time!’

It wasn’t long before I moved back to my home town, Pune. All these drugs were prescribed without testing me for TB. All strong drugs.

Fast forward to a year later: I became resistant to Rifampicin and finally this drug was dropped from my daily cocktail of TB drugs. This is where the resistance pattern changed drastically, following which the doctor altered my prescription - after one whole year.

And just like that, incorrect reports, resulting in several changes to treatment within a span of three years, left me weaker and highly drug-resistant. Those three years took a toll on my body, destroying my left lung. I also lost my hearing, which was a side-effect of one of the injectable drugs.

It was a straightforward conclusion for me. Repeated wrong diagnostic tests and the consequent repeated changes to my treatment regimen worsened my condition. Finally, it was in Mumbai that I was put on therapy to salvage the situation. I was approved for Bedaquiline and took it for six months.

I improved, I felt better, and also managed to have my hearing restored through cochlear implant technology.

However, a year later, my cough returned with partial weight loss. I was advised a surgery which would completely remove my damaged left lung.

After the surgery, I was again put on a course of both Delaminid and Bedaquiline, for a period of six months. And finally, for the first time in six long years, my sputum turned negative.

I am a living example of how the wrong diagnosis can destroy years of life, much of my social circle, and my entire family’s savings.

Why is TB Diagnosis Such a Challenge?

The diagnosis of TB is riddled with severe challenges regardless of which sector a patient approaches. TB is not even considered for diagnosis when a symptomatic person visits the doctor with persistent cough.

Hence, there is a considerable time lapse between the first visit to the doctor and the actual diagnosis of TB.

Even if a person is considered for TB diagnosis, s/he is often subject to wrong diagnostic techniques for TB. 

Those who are wrongly diagnosed and therefore subjected to unnecessary TB treatment also develop higher chances of becoming drug resistant.

Lack of correct and timely diagnosis of TB not only perpetuates the cycle of TB transmission, but also results in the TB bacteria turning drug resistant.

Unfortunately, Drug Susceptibility Test (DST) is not considered early. As a result, many drug resistant patients end up being misdiagnosed and hence, following wrong treatment regimens. Such a scenario leads to increased drug resistance transmission.

What Can Be Done?

1. India needs to provide a reliable and accurate TB test to any symptomatic who walks in. Everyone deserves accurate, free and high-quality diagnosis. There should be no discrimination based on where one seeks treatment and who your doctor is. Engaging with the private sector by providing clear medical guidelines and rationales for compulsory testing will go a long way in curbing the problem of TB.
2. There needs to be an accelerated roll out of GeneXpert across India in both public and private healthcare sectors. It needs to be made accessible to all people so that faster diagnosis and hence commencement of treatment is made possible.
3. All doctors across India must prescribe a DST to all patients diagnosed with TB. This will help in determining the drug resistance status of an individual and improve the treatment offered.
4. Hasten the process of introducing new tests across India. There is a need to study and evaluate the performance of new diagnostic tests on the basis of feasibility, cost-effectiveness, reduced diagnostic delay, impact on clinical decision-making and patient benefit.
5. Strategic, targeted and informed public information campaigns will also help communities identify the symptoms and seek appropriate care. The campaign must include information on TB, its symptoms and where/how to obtain care, as well as diagnosis.
6. A greater focus is needed on developing indigenous diagnostic solutions which are cost-effective, as well as on exploring ways to combine existing and new diagnostics for timely and accurate diagnosis of various strains of TB. India must invest in making its own tests tailored to addressing its epidemic.
7. A patients’ grievance cell, hotline or website needs to be in place where they can clarify doubts. There exists a critical need to stringently implement the ban on serology-based tests for TB detection, as well as to ban the use of IGRAs in the private sector for active TB diagnosis.

India cannot address its TB crisis until it ensures universal access to reliable accurate and free TB diagnosis. DR TB needs to be diagnosed early to reduce costs, human suffering and transmission rates. In the end, we should not forget that timely and accurate diagnosis equals lives saved!