Deserted by family, he seeks solace in PMDT staffers…….

Shobha Shukla - CNS
Anirban Mukherjee is from Kolkata. An only child, he is 32 years old and educated till Class 10. No one else, except him, in his family has ever had TB. He has never smoked nor ever eaten gutkha/paan masala, but used to take alcohol occasionally in the past.

Anirban was already married and had a daughter when he was first diagnosed with TB, way back in 2002. At that time he was working as a marketing manager in the mess of a students’ hostel in Dhanbad, Bihar. He first took treatment in the private sector but then came to the DOTS centre where he was on Category1 (Cat1) TB medicines for 5 months. According to him, he was told by the caregiver at the centre that he was TB free. So he discontinued the treatment. Two months later he had a relapse. The cold, cough and fever returned.

“I came to K S Roy Hospital, Kolkata in 2007 and was put on Category2 (Cat2) treatment. But even after 9 months of regular medication my sputum tested positive. So I was declared a Cat2 failure. My sputum was sent to an Intermediate Referral Lab for culture and the test report confirmed that I had MDR-TB. I started MDR-TB treatment under the government programme of PMDT (programmatic management of drug resistant TB) in February 2010. I was on treatment for a long period of 27 months, yet at the end of it my sputum again tested positive. Eventually I got cured, went back to my community and back to my job in Dhanbad. But again after a few months there was a relapse. My sputum which was sent to a Designated Microscopy Centre for testing (while I was working in Dhanbad) came out positive again at the end of 2011. So in 2012 I back was in the same K S Roy Hospital with XDR-TB.”

 Meanwhile Anirban’s wife had divorced him in 2008 because of his TB, and taken away her daughter with her. His employer turned him out of his job and his landlord threw him out of his house. His mother too refused to take him back. He was now without a home and without a job but saddled with drug resistant TB -- a completely devastated destitute. Where could he go? He could only think of knocking at the doors of KS Roy Hospital once again and luckily for him, the Superintendent there admitted him on compassionate grounds. When I met Anirban in January 2013, he had already spent 14 months in the hospital admitted as an in-patient. The nurse in charge of the MDR-TB ward told me that he would remain there as long as his treatment would continue.

His own people having left him, the hospital is now his home for all practical purposes. Abandoned by family, it is strangers who are taking care of him and attending on him. He has no visitors from the world that exists outside the walls of the hospital. Yet there was a glow of happiness and gratitude on Anirban’s face as he spoke to me on that eve of the Republic Day. He said, “I am very happy staying in the ward here. The sisters (nurses) are doing much more than my family could ever have done. They are very dedicated in their work. All the responsibilities which should have been taken by my family members are being done by the sisters the care givers and doctors of this hospital. They are helping me in whatever way they can. They are closest to my heart. I am too happy to stay in the hospital. I have no feelings for my real family, but I am very grateful to all the hospital staff.”

Anirban’s message to other TB patients—We should have faith in the sisters and doctors, and other healthcare givers and listen to them and follow all the instructions given by them on infection control. We should also strictly follow the treatment schedule and then we will be cured. I am very hopeful of getting cured.

(This story is the third in line of the series Living with drug resistant TB based on interviews with patients enrolled in PMDT and highlight their personal experiences. The names of all patients have been changed to respect their freedom of anonymity, given the huge social and internalized stigma connected with the disease and associated with other factors such as poverty and illiteracy)

Shobha Shukla, Citizen News Service - CNS
September 2013
(The author is the Managing Editor of Citizen News Service - CNS. She is a J2J Fellow of National Press Foundation (NPF) USA and received her editing training in Singapore. She has earlier worked with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also co-authored and edited publications on childhood TB, childhood pneumonia, Hepatitis C Virus and HIV, violence against women and girls, and MDR-TB. Email: shobha@citizen-news.org, website: www.citizen-news.org)