Thane man takes to X as last resort to get TB drug

After trying in vain for more than a month, an extensive drug-resistant tuberculosis (XDR-TB) patient from Thane had to appeal for help on social media to get delamanid - one of the new drugs only available with a few public health centres.

Uttam Ayivlam, 26, has been on TB treatment since August 2021. “Delamanid is one of the anti-TB drugs I have been on since January this year. I was asked to continue the drug even after the six-month course was complete. However, it was not available for more than a month. I have already had my share of hospitalisation due to TB infection and did not want to die,” said Ayivlam, who works from home as a back-office support worker with a firm.

Desperate, he put out a post on X, formerly Twitter, on Monday night. Within 16 hours of the post going viral, officials from Kalwa TB centre in Thane reached out to him.

“I received a call from the centre informing me that I would get the medicine for 15 days. They also assured me to help me with further treatment,” Ayivlam said.

An official from the Kalwa centre, however, refuted Ayivlam’s claim that he did not have delamanid. “He had the medicine, but his stock was about to get over. He must have panicked since we did not call him in the last two-three weeks for follow-up. We generally call and tell patients about the availability of medicines,” the official said.

Ganesh Acharya, a TB survivor and activist who has been in touch with Ayivlam, said there are many such patients who do have to extend the delamanid treatment for a longer period. “Ayivlam said there were problems in his TB tests which led him to become an XDR-TB patient from being an MDR-TB patient. He will also undergo an emergency bronchoscopy tomorrow. His right lung has been affected due to the infection.”

There is a long waiting list for delamanid in Mumbai and Maharashtra and the government needs to urgently address the problem, he said. “Every patient would not take the help of social media.”

Apart from delamanid, the city and the state have been seeing a shortage of other TB drugs -moxifloxacin, cycloserine linezolid, clofazamine, pyridoxine - since June, people aware of the matter said.

“Things have improved a bit with patients getting the drugs for five-seven days. The last few months have been tough for drug-resistant TB patients as they struggled to get the medicines and even spent from their pockets. Before the crisis began, the patients used to get medicines for a month,” said Acharya, adding that the frequent stockouts of anti-TB drugs threatens to undo the progress made through the National TB Elimination Programme.

“The DOTS Plus Guidelines by the Centre’s Revised National Tuberculosis Control Programme also acknowledges the need for an uninterrupted supply of second-line drugs (linezolid, clofazamine, pyridoxine and delamanid). An interruption will increase the chances of developing further resistance to drugs and the risk of disease transmission to a larger community,” Acharya said.