It was a indeed a humbling experience for me to meet Ajay, a middle aged graduate from Muzzafarnagar, UP. Ajay was one of the rare cases of extensively drug resistant TB (XDR-TB) who had tested negative, but was still under treatment, and recovering in the MDR-TB Ward of Rajan Babu Institute of Pulmonary Medicine and Tuberculosis (RBIPMT), New Delhi, when I spoke to him (or rather he insisted that he speak to me) in February, 2013. He was very keen to share his agonizing experiences with the rest of the world so that others would not suffer the same fate as his due to ignorance about diagnosis and treatment of TB.
Here is his story in his own words--
“I faced the problem of TB for the first time in 2004 and then I took treatment for 9 months from a private hospital. The doctor said that I was okay, but there was still no improvement in my coughing. So I kept on taking medicines from here and there. I would stay well for a while and then the cough would return. I became very sick again in 2006. My friends and relatives advised me to go to Delhi. So I came to this city and took treatment for 9 months again in a private hospital, but I did not get much relief. Then somebody told me about another doctor. So I tried him too and was under his treatment for another 14 months. But there was no improvement in my condition. I felt convinced that my death was imminent. Then an acquaintance directed me to a doctor in Meerut and I was once again on medication for 10 months. Never did I miss my medicine dose even for a single day. But it was of no avail. My health did not improve at all. By now I had become desperate and lost all hope. I asked the doctor as to how many more days of my life were left.
Then, on a well-wisher’s advice, I came to this hospital. I clearly remember that fateful date of 15th June 2012 which changed the course of my life (for better). My attending doctor, Dr Anuj Bhatnagar sent my sputum for culture testing at All India Institute of Medical Sciences. This was the first time in my so many years of TB treatment that somebody had thought of sputum culture being necessary for proper diagnosis. None of my previous doctors in the private sector had advised me to do so. I will forever remain indebted to Dr Bhatnagar.
The report came after three and a half months. Meanwhile I was admitted to Lala Ram Swarup TB Hospital in Delhi. After my report came in September 2012, my treatment for XDR-TB began on 4th October 2012. Since then I am admitted here in this hospital and have been on this treatment for over 4 months. I am feeling a lot better now. I feel now that I will live and not die.”
“The government of India is doing a commendable job by providing such good facilities to TB patients in Delhi. I wish these amazing diagnostic and treatment facilities are also made available for patients in villages and far flung places where private doctors are fleecing hapless victims like. I can say from my personal experience, and those of my acquaintances, that families are being ruined and devastated financially while seeking treatment from private doctors, especially in small towns and villages. I have seen people spending INR 5 lakhs (then about $10,000) from their pockets on TB treatment without getting cured. The private sector only drains out money from our pockets but has nothing to offer in return. People do not have much knowledge about this disease which is spreading at an alarming rate as it is infectious. I wish there was some vaccine to control its spread.”
Ajay’s message to other TB patients: “I would like to spread the message that the Indian government is taking a lot of initiative for TB care and control. But very often the money provided for this work is not used properly, especially in a state like UP which has been riddled with corruption scams. The media should also pay more attention to this problem and spread awareness in common public. If I stay alive I will become an advocate for TB control and spread awareness about it in society.”
October 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)
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