With multi-drug resistant tuberculosis emerging as a major obstacle in the fight against the disease, healthcare experts have advocated a collective move towards improving diagnostic mechanism that helps in its accurate diagnosis.
A symposium on appropriate diagnostic mechanism to fight drug-resistant TB was organised at AIIMS in collaboration with global medical technology company BD. It was inaugurated by former Director General of ICMR V M Katoch and presided over by S K Acharya, Dean of Research, AIIMS.
The experts said inaccurate and delayed diagnosis continues to be a major challenge, which also perpetuates spread of drug-resistant TB.
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Adoption of liquid-based TB drug susceptibility testing on a larger scale is key to improving timely diagnosis of drug-resistant TB, they said.
"Inaccurate and delayed diagnosis of TB continues to be a challenge in both public and private sectors. In early stages when the drug resistance starts developing, a new crop of MDR bacteria erupts which cannot be detected by molecular methods but only by liquid culture methods.
"Therefore, whenever there is a suspicion of MDR-TB, the samples must be subjected to phenotypic second line drug susceptibility testing, using liquid culture systems," said Sarman Singh, Head, Division of Clinical Microbiology and Molecular Medicine, AIIMS.
His team's findings, published in 2011, demonstrate that approximately 4.5 per cent of family members of a TB patient do not seek medical attention despite getting infected.
"TB treatment and control programmes should focus on accurate and timely diagnosis, identification of clinically appropriate treatment regimens, patient monitoring and follow-up," said Varun Khanna, Managing Director, India and South Asia, BD.
Advised to have better nutrition Mala says "where do we
get enough money for food? There is virtually nothing given by the government to drug-sensitive TB patients."
Then there is the story of Mumbai-based tailor Owais.
37 years old, he lives in a one-room tenement in Dharavi battling injection-induced HIV, MDR and XDR TB.
He was one of the first people to be given Bedaquiline, one of the few drugs remaining to treat multi-drug resistant TB, in India.
The drug had terrible side effects: "I felt like my body was on fire. I would get up in the middle of the night to bathe. Sometimes I couldn't sleep for days. It was unbearable," Owais recalls.
In September 2013, he finished the Bedaquiline course and his tests came back completely clean. Despite this, Owais kept taking category three drugs because of the previous reappearance of the disease.
In March 2015, he finally stopped TB drugs completely - almost a decade after he began treatment.
Unemployed person Zakir-Ul-Ansari, 28, from Howrah, West Bengal, has this to say. "When you take medicine for MDR TB - it's a fight every day. If you don't fight this disease, its treatment can consume you."
When his health deteriorated, he was forced to come back home and was detected with MDR TB. The last nail in the coffin was all his siblings, save one, severing ties with him. Zakir praises the doctor at Jadavpur, "His counsel gave me the will to fight," he says, now eager to help others with the disease. "I came back from the dead, I have to help others."
TB does not distinguish between the classes. 41-year-old development professional Prabha Mahesh from Maharashtra recounts her own arduous journey with the disease in her 20s.
It began as a small swelling on her neck which soon grew into a large painful one and prominent and everyone knew she had TB and started avoiding her at her workplace, even though she headed the organisation.
"It began subtly when I noticed that I was eating my lunch alone every day," she says. She also recalls her own feelings as a patient and the isolation she imposed on herself.
Prabha was treated through private sector with medicines costing almost Rs 40,000 every month. She recieved no counselling from her doctor but ws just told to be careful with her baby. She says she was unware of the government treatement, nor was it ever suggested by her doctor.
She bitterly recalls when she briefly gave up the medication, overcome with anger and frustration at the discrimination at her workplace.
"They used to look at me and treat me like I was some infected material. No one would even shake hands with me. What is surprising is that despite a prominent growth on my neck, no one ever asked me about it," she says.
After a year of treatement in 2000, Prabha was cured but she continued to live in fear of the TB returning.