NEW DELHI: Debshree Lokhande, 31, is a confident and strong woman like many of her peers. It is only when she opens up about her fight against Tuberculosis (TB) that an outsider can understand how persistent the disease can be even with the best of medical treatment.“‘You will have to take the medicine for a long, long time’-the technician gravely pronounced as he told me I had tuberculosis,” Lokhande says, recalling the episode that happened seven years ago in Ahmedabad.
“I felt bad, uneasy at first. But, was not really prepared for what lay in store for me. My maternal grandmother panicked. She probably had a premonition that the disease will make us pay a very heavy price-physically, mentally and socially.” Considered by many as an infectious disease of the “past”, TB continues to be a major public health concern in India. Worse, its carrier Mycobacterium keeps developing resistance to the drugs used to treat it and is becoming deadlier.
India continues to have the maximum TB cases in the world as it accounted for nearly 27 per cent of the about 10 million new patients in the world, as per the WHO 2018 TB report. The numbers are frightening: around 4 lakh of the total 2.8 million patients in India died last year. A majority of them had Multi-Drug Resistant-Tuberculosis (MDR -TB). In 2017, India accounted for 16 per cent of the 4,80,000 new drug-resistant TB cases.
The First National Anti-Tuberculosis Drug Resistance Survey, released by the Union Ministry of Health and Family Welfare in March, underlined the need to change the strategy to tackle multi-drug-resistant tuberculosis MDR-TB. Narges Mistry, who heads the Foundation for Medical Research in Mumbai, explains that while patients with drug-sensitive TB are prescribed a standard six-month regimen of first-line drugs — Rifampicin, Isoniazid, Pyrazinamide, and Ethambutol — for two months, followed by Rifampicin and Isoniazid during the next four months, it’s not that simple in the more complicated cases.
“Patients with drug resistant-TB have to be given drug-sensitivity screening tests to find out just which combination of first-line and second-line drugs can be used to treat them,” she says. “In these tests, their MDR bacteria are exposed to drugs in the laboratory to help doctors design or tailor the right combination of drugs that will work for individual patients.”
Treatment for MDR-TB usually takes 18 to 24 months, and second-line drugs are more expensive, toxic and not easily available. In Lokhande’s case, she had to get Bedaquiline, the most effective drug for MDR-TB, from Belgium. While the standard course of TB drugs, four to six different medicines, can cost as little as Rs 1,200, MDR-TB treatment can cost almost Rs 40 lakh to Rs 50 lakh for one year in the private sector, as per a study published by Zarir Udwadia, a renowned TB specialist at Mumbai’s P D Hinduja Hospital, and some of his colleagues.
Additionally, patients have to get sputum cultures regularly during the course of their treatment, which can add another `1 lakh to the bill annually. Treatment for different forms of drug-resistant TB can lead to blindness, deafness, liver and kidney toxicity, rashes and psychosis - some of which Lokhande learnt the hard way.
The problem, however, is that drug-resistant TB has aggravated in India through the years as the government kept denying it, both Udwadia and Mistry point out. “You don’t treat a patient with pneumonia or peritonitis with drugs you know they are resistant to. Yet, that’s precisely what we have subjected many of our MDR patients to over the last decade. It’s not scientific, it’s not intuitive,” says Udwadia.
Government officials did not respond to specific queries on what is the larger strategy to achieve TB elimination, which aims at reducing from 217 cases per 100,000 people in 2015 to 142 cases in 2020 and 44 in 2025. “The fact is that Bedaquiline is given in public health systems at just six centres in India and access is too cumbersome for even genuine patients. I don’t see the situation changing anytime soon,” admitted a senior official attached with the Revised National TB Control Program (RNTCP).
Meanwhile, Lokhande is trying to pick up her life after the long, arduous journey, which cost her hearing, and a lung. Her family had to spend about `50 lakh on treatment. “My family had to put all their life’s savings, about `25 lakh, to arrange for a cochlear implant to ensure that I get back my hearing. At the end, we were so broke that we had to crowdfund my lumpectomy in 2016 as the TB had severely affected one of my lungs,” says Lokhande.
The silver lining is that Lokhande, after she came in touch with Dr Udwadia, is TB free. She is trying to piece together her life to live as normal as she can despite physical limitations. Not everyone, though, is as lucky.
Financial drain
While the standard course of TB drugs can cost as little as Rs 1,200, MDR-TB treatment can cost almost Rs 40-50 lakh for one year in the private sector, as per a study by Dr Zarir Udwadia, renowned TB specialist at P D Hinduja Hospital, Mumbai.