48 years old Deepak (name changed upon request), was leading a happy normal life with his wife and 3 children. He was working in a government job as a driver in the police department in Ramgarh district of Uttarakhand when, way back in 1997, he suddenly vomited blood one day. The doctor diagnosed him with pulmonary TB on the basis of a chest X-Ray and put him on a 6 month Anti TB Treatment under DOTS (Directly Observed Treatment, Short-course). Deepak was presumably cured and remained okay for a year and a half. Meanwhile he had been transferred from Ramgarh to Uttar Kashi. There his problem recurred and he vomited blood again.
He was put on treatment once again in this new town, but this time he was not very regular with his medicines and even missed some doses due to his own carelessness, even as he was transferred once again from Uttar Kashi to Srinagar. He would stay healthy for some time and then again become sick. He then went to a private doctor and took medicines for 9 months and felt completely cured although financially devastated-- he had to spend around INR 30,000 on his treatment in the private sector.
After remaining healthy for several years, Deepak took ill once again in February 2012. This time he went to a DOTS centre in New Delhi (where he was now posted) and was put on medication. Simultaneously his sputum was sent for culture, the report of which came in April 2012 and devastated Deepak completely. The disease had returned with a vengeance in the form of Multi Drug Resistant TB (MDR-TB). He clearly remembers the date of 12th April 2012 when his DOTS centre had referred him to All India Institute of Medical Sciences (AIIMS). The doctors at AIIMS sent him to Rajan Babu Institute of Pulmonary Medicine and Tuberculosis (RBIPMT), New Delhi for pre-treatment evaluation and treatment initiation (AIIMS does not have indoor admission facility for TB patients, but has a liaison with RBIPMT to admit patients there). He stayed there for one week and after that he has been going daily to his DOTS centre to take the medicines in front of the DOTS provider.
Citizen News Service – CNS met Deepak in February 2013 in the Out Patients’ Department of AIIMS, when he had come for his three monthly follow-up. He told me excitedly that he has been testing negative from the fourth month of treatment onwards and was now in the continuation phase of treatment. The ordeal of daily injections was over and he was well on the path of recovery. As a matter of precaution, Deepak had stayed in his police department’s hospital, away from his wife and 3 children, till his sputum culture report tested negative. Now he stays at home but still wears a mask and practices all infection control methods.
Deepak has since become a TB advocate and if he comes across persons suffering from persistent cough and fever he urges them to go to a DOTS center for a free checkup and treatment there. His message for other TB patients: treatment in the Government setup is free and very reliable. This is a boon for poor people like me and we should make use of the government facility if we unfortunately happen to contract the disease. The medicines for TB are very expensive in the private market. I myself spent around INR 30000 while seeking treatment in the private sector and yet was not cured—rather I developed a worse form of TB. One must take the medicines regularly, eat nutritious food and stay away from alcohol and cigarettes.”
Note: This story is the first in line of the series Living with drug resistant TB based on interviews with patients enrolled in PMDT and highlight their personal experiences. This series is part of the Report: Best Practices in PMDT in India (CNS and Lilly MDR TB Partnership, July 2013). 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. (CNS)
(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: firstname.lastname@example.org, website: http://www.citizen-news.org)