For drug-resistant TB, med compliance is a struggle

MUMBAI: In 2020, when Sharmila Rajbhar (36) was referred to the Médecins Sans Frontières (MSF) clinic in Govandi, she was unwilling to continue the treatment for her extensively drug-resistant Tuberculosis (referred to as XDR-TB), which she had been taking since 2016. She was exhausted from the side effects of the medicines and she feared burdening her husband, who had recently recovered from multidrug-resistant TB and returned to his courier delivery job. However, 18 months down the line, Rajbhar hasn’t missed even a single day of her medicines. “I just want to get well so that I can go back to work,” the Bhandup resident and mother of a four-year-old, said.

Patients like Rajbhar who suffer from drug-resistant TB hang by a thin thread, always on the verge of giving up medicines, thus making drug compliance a challenge for medical professionals. Typically, drug resistant TB medication includes several pills and has toxic side effects. In addition to the prolonged treatment, the loss of income which is often a result of their ill-health demotivates them from continuing their medication. Healthcare workers including chest physicians, counsellors and patient support supervisors use a range of interventions to motivate and ensure that patients stick to the regimen to cope with the disease. The MSF patient support supervisor Santosh Jha, for instance, heard Rajbhar’s concerns and involved her husband in counselling sessions. “Building compliance depends on multiple factors: the way healthcare workers communicate with patients, building their trust and offering support that they may be lacking,” said Jha, who has been working with the MSF clinic for the past 10 years.

TB is a serious infectious disease. The infection that responds to the first line of TB medications is referred to as drug-sensitive TB. However, when the bacteria become resistant to some of the drugs, it is referred to as multi drug-resistant TB (MDR-TB). When they become resistant to most available TB drugs, the infection is XDR-TB. In Rajbhar’s case for instance, she was first detected with TB in 2005 and had been on medication. Eventually, she developed XDR-TB, as the bacteria became resistant to most of the drugs available for treatment. Before the pandemic, Maharashtra recorded 20,000 new TB cases every month. Nearly 22% of these cases are from Mumbai. In Mumbai, 54,983 new cases of TB were diagnosed on average annually between 2018 and 2021. This included 5,385 MDR-TB cases and 439 XDR TB cases annually. The “lost to follow-up” rate hovered between 5% and 7% annually. The independent clinic is located in M-East ward. According to the civic body, M-East ward has nearly 2,800 patients on active treatment for drug resistant TB, making it the biggest such cluster in Mumbai. The clinic offers individualised treatment, psychosocial support, and integrated psychiatric care under one roof. The clinic handles some of the most complex drug-resistant cases and has initiated treatment for over 750 patients since 2012, most of them with the two newest anti-TB drugs bedaquiline and delamanid. The clinic implements multiple methods to improve medication compliance.

“We start with understanding what the patient’s support system is like and accordingly plan our interventions. Commonly, patients who lack family support are more likely to drop out midway. Other aspects like income loss, inability to carry on with household work and illness of other family members also play a role,” said Jha adding that some patients are then offered travel and nutritional support as well. “We try to connect the benefits of the treatment with the patient’s short term and longterm life goals, and make them aware about the improvements in their health due to the compliance,” he said.

The treatment of drug-resistant TB goes on for 18 to 24 months. The excessive pill burden and their toxic side effects including nausea, skin rashes, ulcers, hearing loss, and vision impairment are among the prime reasons for patients dropping out of treatment.

HT PHOTO Shehnaz Khan and her husband Yunus with a patient counsellor at the MSF clinic in Govandi.