Bushra Mirza, 16, was diagnosed with tuberculosis (TB) two months ago. She was prescribed four medicines for nine months but she took them for a month because her coughing stopped. Now her hacking cough is back, and so is she, in the airless 8x8 room of pulmonary physician Dr Gaurav Ghatawat at the not-for-profit Fauziya Hospital in Mumbai's congested Kurla West neighbourhood. She is visibly underweight, weighing 35 kg for her 5-feet frame.
Bustling Mumbai is undoubtedly India's most vibrant metropolis, but with 60% of its 13 million population living in slums, inevitable shortfalls in housing, sanitation and nutrition make people susceptible to infection.
Dressed in a sequinned black burqa, Mirza tearfully looks at her GeneXpert test report that confirms the TB diagnosis. The doctor gently tells her that the only thing that can make her well is having all four prescribed medicines every day for the next nine months. She nods wordlessly. The message has finally sunk in.
Fauziya Hospital dispensary gives these medicines free and Mirza gets a fortnightly dose to ensure she is there next fortnight for a follow-up. If she misses an appointment, Anjali Mulik, who works as a counsellor at the TB clinic, will visit her at home and convince her to continue treatment.
Treatment works, as it did for Mohammad Ansari, 20, who works in the "garment line", his euphemism for hawking secondhand clothes on the streets. He hasn't missed a day of medication for two months. His cough is gone, he's full of energy and he's weight has gone up to 54 kg from 50 kg.
Ansari was lucky he didn't have MDR (multiple drug resistant) or XDR (extensively drug-resistant) TB, which is resistant to the two most powerful anti-TB drugs, isoniazid and rifampicin, in addition to being resistant to fluoroquinolones (such as ofloxacin or moxifloxacin) and to at least one of three injectable second-line drugs (amikacin, capreomycin or kanamycin). MDR-TB and XDR-TB usually take at least two years to treat with drugs that are more expensive and toxic.
Thane West-resident Haji Mohammad, 28, has MDR-TB, which killed his brother two years ago. Mohammad got symptoms four months ago but was misdiagnosed initially by private practitioners. He was diagnosed with MDR-TB two months ago and is now in hospital with severe drug-induced jaundice that has busted his liver. His weight is down from 50 kg to 35 kg in two months.
Ruksana Mohammad, 19, his wife of seven months, is besides herself with worry. Mohammad, who drives tempos and cars for a living, has been too sick to work since November and the family has already spent Rs 10,000 on his treatment. Though TB is treated free in government hospitals, she says his mother won't agree to him being admitted to Mumbai's sprawling Sewri TB Hospital, where treatment is free but the conditions are so depressing that the hospital makes news for patients going AWOL or attempting suicide, both successfully and unsuccessfully, than cure.
The problem is not the hospital but the disease. Most people who end up at Sewri are people like Mohammad with MDR- and XDR-TB who are in a government hospital simply because their families don't have the Rs 5,000-Rs 6,000 a month for medicine.
"The hospital is full of the living dead," says Ruksana with a shudder, "people there are only skin and bone and cough out blood all day. Then they die".
"Since the treatment for MDR and XDR takes two years and the progress is gradual, people think they're not getting better and choose to leave to try their luck with other cures," says Dr Ghatawat. He has lost two persons to XDR-TB this year, with 15-year-old Farzana succumbing to it last month because she stopped medicines and got a tabeez (amulet) instead. That was three months ago. Last month, Farzana came back to hospital bleeding from the mouth but it was too late for the medicines to work. She died within 24 hours of being admitted.
Bustling Mumbai is undoubtedly India's most vibrant metropolis, but with 60% of its 13 million population living in slums, inevitable shortfalls in housing, sanitation and nutrition make people susceptible to infection. So common are MDR and XDR now that Dr Ghatawat routinely does the GeneXpert test at a subsidised price of Rs 250, compared to the market rats of Rs 2,000. It's done free in government hospitals but only for suspected MDR and XDR cases.
He, like most doctors at Sewri, doesn't wear a mask on hospital rounds. "For patients to adhere to treatment, you have to get them to trust you with their lives. How can you do it if you speak from beyond a mask?" asks a Sewri doctor who did not wish to be named.