This story, and the follow up to it across villages in Bundelkhand, set off a special investigation on the still pervasive, and completely underreported spread of tuberculosis in this region
Banda district, Naraini block, Gopra village. 3 October 2016. Tuberculosis, a disease that is, or should be, of a different time, hangs heavy in the air here. Over the past 10 years, 8 people have died from TB in one hamlet of this village, although government records had only 2 registered cases. Khabar Lahariya reported from the village in June 2016, when we came upon a Dalit family completely devastated by the disease, and numerous others for whom the illness had been a part of life for years. When we interviewed the health department about the shocking state of affairs, and the chasm between our eyewitness reports and their inadequate records, they said that they would take action. Four months and one fatality later, as this story went into production, the department hastily set up a camp to do on-the-spot testing, which revealed that 14 people in a hamlet of 100 were suffering from tuberculosis.
We first met Kallu, a Chamar, when we came to Gopra, a village 55 kilometres from the district headquarters, in June. He was all eyes and ribs; he could barely complete a sentence without gasping for breath. The tuberculosis had reduced him to just skin and bones and no capacity to move. Kallu’s mother (45), wife (30), brother (25) and sister-in-law (24) have all died of TB in the span of 4 years. His father is a TB patient as well. Only Kallu’s two children are left, but soon there will be no one to care for them. This time when we went back to Gopra, Kallu was dead.
Kallu’s father, Mohan, 65, relates in a voice that is just barely emotional, eyes barely moist, “Kallu died 15 days after you were last here. And there are still many other patients here…” The illness is slowly reducing him, as it did to his son, to nothing but a frail frame. “Since the past 6 months, I find it difficult to breathe. And I also have this cough…I know this is TB.” When we asked about his treatment, he was strangely almost surprised, maybe even angry, “Treatment? No. I’m a poor man. I have no savings. We just suffer our illnesses.” What he didn’t say then, but what Kallu had told us before he died, was that the family had sold all their 10 bighas of land to pay for TB treatment at a well-known private hospital in Chhattarpur. The eldest member of the family has nothing left – no money, no will to recover. More disturbing was the lack of alarm that the disease had slowly spread and killed an entire family – something which surely the ASHA worker Aradhna Pal, as the designated ‘DOTS provider’ should have caught on to, if she ever reached the hamlet.
Rampal, another inhabitant of the village told us, “No doctor comes here, and we’ve told the pradhan this. He seems to be listening, but he does nothing. The ASHA worker comes up to the village, but not to our hamlet.” When we went to her house, her husband seemed incensed by our questioning, and Aradhna herself just brushed us off saying that her husband managed her work.
60-year-old Lali is also a TB patient here. “There’s a lot of coughing and the fever keeps coming back. It’s been like this for 1-2 years now. I’ve been going to the government hospital for medicines. I don’t have the money to get any other check up done.” Lalita, 55, similarly complains of a chronic pain in her stomach, “Yes it’s TB. It’s been many years. The cough, and this pain in my stomach for the past 3-4 years.”
Kallu’s rattling breath is conspicuous in our memory when we meet Babadeen Yadav, 40, who is growing frailer by the day. “I’ve had this cough and phlegm for the past year or two. I was going to Nayagaon [a famous, and high-priced private TB hospital in neighbouring Chhatarpur district, which serves most of Banda and Chitrakoot’s TB patients, impatient with or cynical of the government treatment] for treatment.” He shows us the pills he has been taking, “I got this medicine from the ASHA worker. These 7 tablets are one dose to be taken at one time.” On some probing about his regularity of medication, Babadeen admitted he was not taking it at the moment. “I’ve been feeling dizzy… maybe because you’re meant to have milk and I don’t have any.” Babadeen’s confession was echoed in many other patients we interviewed, for whom the prospect of up to 7 pills every few days, and tackling side effects alongside a long-term fatigue, was enough to wean them off the treatment.
In our search for someone from the health department to address our fears of this spread of TB to epidemic proportions, we found the (unsuspecting) SDLS (lab assistant) Krishna Chandra Verma. “People don’t come to us to get their doses of the medication. They go to the ASHA. When we’ve visited the village and spoken to people, or checked their (treatment) cards, they always say they are taking their medicines.” At the Community Health Centre (CHC) in Banda, the Medical Officer Dr Neeraj Singh told us the indications for the disease, “What we advise is that if you are losing weight, or you have a fever in the evenings, then you should not neglect to go to the closest health centre. If you’re told to get a check up, then please do it immediately. Nowadays every health centre has the facility to take a sample of your sputum or do an X-Ray.” Surprising then, that patients in Gopra showing symptoms for over 2 years had still not been diagnosed and recorded in the government TB treatment programme.
The Chief Medical officer of Banda district, Dr G. S Vajpayee was reluctant to talk much about the case of Gopra village. We asked if he had anything to say about us coming back to him the second time, after people had died in Gopra village, and the administration had done nothing about it. “I don’t have any such information. But I will ask the District TB officer to do a survey in the village and give me a report.”
We asked him if people had been told in this village about the DOTS treatment that the government made available, and he seemed to brighten up a little, “Yes, DOTS is one of our most successful programmes. I don’t know what the problem is in this village. We have some awareness campaigns, so we will definitely run one of them in this village.”
Soon after our interview, the CMO did an investigation into the status of the village along with the pradhan. Announcements were made and a camp was run to provide testing facilities in the village. 14 patients were diagnosed with TB as per these tests, and sputum slides were prepared to document the diagnoses. An awareness programme about TB was run, and the health department will monitor the treatment that patients from Gopra are undergoing.
The investigation in Gopra has triggered a peculiar backlash on the part of the embarrassed village and district-level administration: the District Magistrate was sent a notice on Khabar Lahariya’s false reporting on the situation, since there was no evidence (ie, government records) for the claim that 8 people had died of TB in Gopra. The pradhan of the village had a petition signed and circulated, that no one in Gopra was suffering from TB. However, the case of Gopra throws open to question the shocking lethargy of an administration slow to record and slower to track the incidence of TB, in a region where poverty and economic paralysis are only making the disease more pervasive.
Other stories on the spread of TB in Bundelkhand:
