MUMBAI (ISJ): 'Prema's' eyes playfully gleam behind her face mask. She looks frail and full of hope. Draped elegantly in a colourful saree, Prema, 25 years old, is unusually thin and knows she has tuberculosis (TB). She is scared and doesn't have an idea of what it is, but has survived to tell horror stories of the extremely painful side effects of the drugs she has been taking since she began treatment a year ago. She pulls out a warehouse of medicine strips from a ziplock bag to show. Prema has a cocktail of 13 pills every day, day after day, for two years. But she is happy that her 9 month period of injectables is over.
She travels once a month from her crowded home leaving her two daughters,aged seven and seven and six other members of her family in a slum in Kandivili,a suburb north of Mumbai to the facility managed by international humanitarian medical aid organisation Medecins Sans Frontieres,MSF (Doctors Without Borders) in Khar,located in the heart of the city.
Mumbai is no less tragic and fascinating.The city holds a special place for TB,since the first cases of extensive drug resistance (XDR) TB were reported in the country."We have been in Mumbai since 1999 and treating vulnerable groups,"says Luke Arend,country director of MSF."Over recent years,Mumbai has been grappling with increasingly resistant strains of tuberculosis and we decided to address the growing need for treatment in the city,"he adds.
In her quest to find out what ailed her,Prema was tossed from one place to another.First,she went to a private doctor.Later she was asked to go to Sewri TB Hospital,supposedly Asia's largest that has a 1000 bed facility.According to a news report in 2013,ten patients died every day at the Sewri Hospital.She was admitted in the hospital for ten days and underwent treatment for six months.
Prema was still consumed by TB.Later she was referred to the MSF clinic by a private practitioner who could not handle her complicated case.By then Prema was diagnosed to have XDR-TB She now visits the clinic once a month and knows she has a fighting chance only if she adheres to the treatment regimen.When she goes back home her family members ensure she wears her mask all the time.
There are far too many stories of lost lives in the city.Those who are alive have nowhere to go,a chilling reminder of patients affected by DRTB who are left in the lurch.
Kedar is one such excluded patient. He looks younger than his age.At 47,Kedar is HIV positive and co-infected by XDR-TB.He has been on treatment for 18 months.He has already finished 11 months of injectables and has 13 pills a day. "During initial days of medication,I used to feel drunk, dizzy and never had an appetite. Now,I am a lot better,"says Kedar.Fighting stigma and the fear of losing his job, Kedar found help at the MSF clinic.
The gravity of the situation is magnified by lack of access in the public sector.There is a complete lack of government accredited labs to diagnose all forms of DR TB.Then there is a legion of undiagnosed DR TB patients who are on regular tuberculosis drugs amplifying their resistance.
Bedaquiliine,the first new TB drug to be approved by the USFDA in forty years is pending registration in India.It is important to ensure that it is first made available to institutions who have the expertise,capacity and experience of diagnosing and treating DR-TB for patients in real need,says Lorraine.
"Not just that,the government has the responsibility of preventing the indiscriminate sale and prescription of the drug in the private sector to avoid amplifying drug resistance and accelerating what is already a public health emergency,"adds Lorraine.
Moreover there are just three labs in the country including one at the Hinduja Hospital in the city that was recently accredited by the government.Till last year,samples from the city were sent to Chennai and patients had to wait for two months for results.
This is true not just for Mumbai but for the entire country.Decentralising diagnostics is important,says Lorraine.It could mean expediting detection and starting treatment early.Till then doctors like Dolorosa are filled with angst and a deep sense of frustration."It is gloomy and depressing.I have lost two patients in the last six months,a sixteen year old girl and a six year old boy,"says Dr.Dolorosa, doctor at the MSF clinic."It is only with better diagnostics and access to new medicines we will be able to make any headway in providing effective treatment to the patients,"she adds.
Though India had pioneered TB control as early as in 1962,with the launch of a national TB control project,it now carries 26 per cent of the global TB burden,according to World Health Organsiation (WHO).Of the estimated 2.9 million missed cases-people who were either not diagnosed or diagnosed but not reported to any national tuberculosis programmes?India has the highest share with 29 per cent.
*Names of patients have been changed to protect confidentiality