Radha Devi: Managing maladies in Bhuiantola

A path winding through paddy fields led to Bhuiantola, a hamlet where Bhuian Dalit families lived, on the outskirts of Tarwadih village in Jharkhand’s Latehar district.

That month, eight individuals in Tarwadih were on treatment for tuberculosis(TB), a serious bacterial infection that most commonly affects the lungs. Four of them lived in Bhuiantola.

The previous night, Radha Devi, the village sahiya or frontline health worker, an Accredited Social Health Activist(ASHA) had finished helping a woman delivery a baby in the hamlet. Now, walking down the paved path, she called out to Ramavtar Ram who was working in the fields. “Nine number” medicine is over for you. You will be on “CP” from now on,” she told Ram, a farmer in his 50s who was afflicted with TB, and had grown leaner from the infection.

Sahiya Radha Devi1 (1)
Devi did not train as a doctor or a nurse, and studied till only class IV. As one of over 1,325 health activist appointed under the National Health Mission’s community health programme in Latehar, she had supervised Ram’s TB treatment and infection control for the last six months. “I am not fully literate, but I can recognize the medicines as a number or an alphabet in the drug’s name,” said Devi, explaining how she had memorized the long, complicated names in english, an unfamiliar language, of 13 drugs used in TB treatment.

TB is fully curable by antibiotics taken for six months. Yet, India accounts for a quarter of new cases of TB infection, and a fifth of TB deaths worldwide. In Jharkhand, nearly 40 people die of TB every day.The government recognizes those living in remote tribal districts who get poor nutrition and face difficulty in accessing treatment as a priority group for reducing TB transmission.

Crucial infrastructure is absent in Jharkhand’s Adivasi villages. Dr Rajabau Yole a World Health Organization TB consultant in Jharkhand said that though every community health center was supposed to have a X-ray machine for radiological examinations and a courier system to transport sputum samples that needed to be tested for TB, this was missing in most districts.

There is also a major shortfall of doctors. Dr Raksh Dayal, Jharkhand’s state TB officer, said that the state had only 2,200 of the 3,400 doctors and about half of other contractual health staff it needed, and this affected the TB treatment programme. In Latehar, where Tarwadih lies, for instance, in the district TB hospital, 13 of 23 posts were vacant, including the post of a medical officer for TB, which had not been filled since five years.

In such a situation, health workers like Radha Devi filled a vital gap.
Latehar, where Bhuiantola lies, is one of the poorest Adivasi regions in Jharkhand. The families here are especially vulnerable also because they migrate to work in brick kilns in Varanasi in UP, and Aurangabad in Bihar when the paddy produce is exhausted in a few months. Working in kilns, they are exposed to smoke which damages the lungs, and reduces immunity to infections such as TB.

Sahiya Radha Devi counseling women in Tarwadih in Latehar (1)
“Many migrant workers hide it if they develop TB, and often they take medicines for only 3 to 4 months and do not complete the treatment,” said Ramesh Chaubey, Latehar’s district welfare officer.

Radha Devi, who was chosen as the sahiya in 2007 by the village’s residents while she was in her late 40s, had worked in brick kilns most of her life. The labour contractors offered sums of Rs 10,000-12,000 as “advances”, she said, and this was a big draw, but later did not pay regular wages. “At the kiln sites, away from towns, there are no health facilities,” said Devi. “Many workers develop alcoholism at the kilns. Some do not like the taste of the medicines, and some worry about adverse side effects. All these are the reasons why they do not complete treatment.”

Of the eight TB patients in Tarwadih, whom Devi was administering treatment to, Bartu Oraon, an Oraon Adivasi, was undergoing treatment for a relapsed infection. Mohan Bhuian, a brick kiln worker, had developed Multi Drug Resistant(MDR) TB, a more deadly form of TB infection, that develops if a patient gets incomplete or inadequate treatment. In MDR-TB, two of the most powerful TB drugs stop working. Those with MDR-TB can transmit this deadlier form infection to others in close contact through air droplets in the same way as regular TB. MDR-TB is treated with highly toxic drugs over a protracted two years period.

Devi said to control the spread of infection, she had been trained by the staff at the TB hospital in Latehar to ask ask patients to spit in a pan and cover it with ash. “I ask them to take precautions, to use ash to cover their spit, or cough only into a gamcha and boil it in water to prevent further infection,” said Devi. “If they don’t like the aftertaste of the drugs, I even buy them small packets of namkeen with the drug,” she said, showing a small packet of snacks she had carried for a patient. She had also been counseling Neetu Devi, a young farm workers, who had recently delivered a boy, that while she had TB she had to cover her mouth while breastfeeding to prevent the infection from spreading to her baby.

Seeta Bhuian, whose husband Mohan Bhuian had the most serious infection in the village with MDR-TB, said Mohan had taking TB drugs irregularly for five years while migrating to work at the kilns and over time, he had got so sick that he could no longer stand. After he was diagnosed with MDR-TB last year, Bhuian had to take 13 medicines and an injection daily for six months and since the last three months, he had been on seven drugs daily.

“The sahiya came home to give him the medicines daily,” said Seeta Bhuian, Mohan’s wife. She added that Radha Devi had also traveled with Bhuian twice to Itki, 110 kilometers away. This is where the government ran a TB sanatorium, an indoor facility where Bhuian had been diagnosed with MDR-TB.

After nine months of treatment, Bhuian had recovered enough strength to walk, and had taken the cattle grazing that afternoon. But his family was anxious and concerned because one of the medicines, Kanamycin, had had a severe adverse effect on him making him lose his hearing four months into the treatment.

Radha Devi with Mohan Bhuian who is on treatment for Multi drug resistant TB in Tarwadih in Latehar (1)
Radha Devi had traveled with Bhuian to Itki while he was in the most infectious state, accompanied by his younger relatives. “At the sanatorium, the doctor told us the medicines were so toxic that they could make Mohan depressed, paralyzed, or deaf,” she said. “Sadly, I have seen Mohan go through all of these stages this year.”

After getting Mohan Bhuian admitted, Radha Devi had traveled over a 100 kilometers from her village to Itki a second time to act as his counselor when he started developing side effects. “Mohan called me on the phone and said he felt he was going to go mad,” she said. “I was scared I may get lost while traveling alone from our village, but somehow I managed to get to the city. I felt like he was my son and was worried.” For her travel costs, Mohan Bhuian had later reimbursed her Rs 400, after the government hospital staff did not pay her anything for the trip.

As a sahiya or ASHA worker, Devi is supposed to get Rs 100 as “incentive” for each TB case that she reported, but she said she had not received any payments till now.

Devi added that she had heard that the government had promised to double the honorarium of ASHA workers and other ground health and nutrition staff this year. “I have heard ASHA will get paid high amounts of honorarium totaling Rs 3,500-5,000 a month for the work we do,” said Devi. But in the past 16 months, there had been delays in sanctioning sahiya payments, said Suranjeen Pallipamula, a health activist in Ranchi.

“For more than a year now, I have not got paid anything,” said Devi.

An edited version of the story in The Hindu Sunday Magazine here.

All photographs by Manob Chowdhury.

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Reporting series on tuberculosis among workers

Choti Gujjar a farmer had discontinued TB treatment and this has caused her to get multi drug resistant TB She was at the Ajmer TB hospital with her son a mine worker

India has an enormous tuberculosis crisis, but the government still does not have an accurate estimate even of how many Indians suffer from the disease. A million cases are still not notified every year, and people remain undiagnosed, or inadequately diagnosed and struggle for accessing full treatment. While TB can be cured by a drug regimen of six months, the emergence and increase in antibiotics resistant TB is a concern.
These stories trace the effects of economic and health policies in on workers with TB and their experiences with drug resistant TB:

Stone-crushing workers in Ajmer suffer as the government’s ‘active case finding’ drive in the district is poorly managed and block levels hospitals lack basic infrastructure.

The government recognises miners as being occupationally vulnerable to TB. For thousands of miners in Rajasthan, however, an epidemic of silicosis is making that diagnosis even more difficult.

Chotu Ram Bhil a Adivasi migrant miner from Rajsamand was worried he was not better even after finishing TB drugs the previous year

Anti-biotics resistance is growing, and the poorest patients find it difficult to access care and counseling. Diagnosed with multi drug resistant-TB, a tailor in Beawar, Rajasthan narrates how he went through a painful medication regime without counselling support only to have his health worsen and dropped out of treatment despite knowing the risks.

Officials coerce in name of “community-led sanitation”

The rush to show that the Swachh Bharat deadlines have been met has left the most vulnerable low income Dalit households out. Officials have deployed various coercive measures in name of “community-led sanitation.

The panchayat officials in Rajasthan told farmers that if they did not have a red stamp saying “open-defecation free family” on ration cards, they would cut off the ration grains from the government. Those who still did not build by then were marked as households that lacked space to build latrines. This way, the target got reduced and local officials showed compliance.

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Many families that have built latrines don’t use them but government surveys do not reflect any of this. In places where open defecation has not ended, the ministry is relying on statistical tools to show it has.

Full report in HuffPost India here.

Bijolia begins again every October

Every year, the mines slows down and stops at the onset of monsoon, and then resume after harvest. Right now, the stone pits are still full of green water from the rains.
The work is on pause for everyone to return from home after Diwali. Many young men, a few women whose homes are nearby, who did not leave, sit around tea shops, and in the common spaces waiting. But it feels strange. When they speak, it is as if not like the mood of a break or rest, as they wait for the full mine operation to start in another fifteen days. Over and over, it is a: What, but this. This sucks, this kills but this, if they will just increased our wage but this. Maybe I was missing something, but they seemed to be saying, this work seems to ruin everyone’s lives when it exists, and yet even the last resort is ruined if our work is replaced by machines. In the evening, returning from the conversations at tea shops and squares, it seemed like I had been talking to pools of distressed, tied down to stones, in pain people over and over.
Though in late afternoon sun, slumped by the temple wall, Nand Lal Bhil and Ratan ji Bhil cracked one joke after another about Nand Lal’s impending death. “I almost left the house, then I got stuck in the hedges and came back,” Nand Lal grinned. “But I have a ticket (Silicosis certificate) from the Government. At any point, I may have to leave again..”
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Nand Lal had worked in the mines breaking stones for the same contractor forty years, since he was ten, till he fell too ill to work. He was treated for tuberculosis for five years. A year and a half back, the hospital diagnosed him with silicosis. “I had energy, enthusiasm, health, everything. Then one day life took it all, like grime from skin.”
“This is how disease, death befalls.” he said.
“It strikes you, like lightening.”
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Santhali women caught between birth and death

In Santhali villages in Godda, along Jharkhand’s border with Bihar, many slanting stone megaliths that mark the community graves are those of young women who died in childbirth in recent years. Tribal families in the hamlets scattered in Sundarpahari and Poreyhat – many of whom speak only Santahli – recount desperate struggles for medical help when young women in their families in advanced stages of pregnancy experienced complications.

Gopin Soren and Dhetmay Murmu whose only daughter 19 year old   Sadbeeti Soren died during her first pregnancy last year in Paharpur village Sundarpahari block in Godda district Phot Anumeha ayadav

At Paharpur village in Sundarpahari, Gopin Soren spoke haltingly as rain fell over the hut where his 19-year old daughter Sadbeeti, pregnant for the first time, died last year. “On Thursday we went to my son in law’s home in Borhwa, everything was fine. The next morning my wife and I got a message that my daughter had fainted. We reached and called a local medical practitioner. He tried to give her a saline drip but he just could not find her vein,” he recounted. At 5 pm he, Sadbeeti’s husband, and two relatives carried Sadbeeti six km on a cot to Paharpur.

Back in their village Gopin asked the village sahiya (health worker) Phool Marandi for help to reach the health sub-center at Sundarpahari 20 km away. The sahiya called the call-center to request a Mamta Vahan – a free of cost ambulance service for rural women through privately-owned vehicles started in Jharkhand in 2011. By now Sadbeeti was having convulsions, a condition called eclampsia. “I decided to call the vehicle owner Pintu directly. I called him thrice between 7 and 9 pm. He said he is out right now. I understood that he does not want to come. The villagers had attacked a person caught stealing the electricity transformer in the village a day earlier. Maybe he feared that there will be more violence,” she said. At 2 am, Sadbeeti died eight months and two weeks pregnant.

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Twenty km away in Ghanghrabandh village in Poreyhat, Denmey Murmu described she had watched her only daughter Talabiti Marandi, 22, die after giving birth. “Eight hours after she gave birth she started clenching her fists and she said she had a burning sensation. Sarojini the sahiya refused to call a vehicle so we hired a private vehicle for Rs 1,300 after mortgaging my jewellery for Rs 2,000,” she said. On January 19, Talabiti Marandi a graduate from Mahila College, Godda died on her way to Godda government hospital.

Most Santhali and Pahariya families here survive on a diet of rice and potatoes. Pregnant women are meant to get Iron and Folic Acid (IFA) supplements tablets – each costs 20 paise – after their second trimester but Jharkhand government stopped distributing these for two years after the central government discontinued providing the tablets between 2010-12.

“Many women have severe iron deficiencies and are at high risk because after the delivery their blood does not clot, the uterus does not contract and the woman may die of post-partum bleeding. Government has schemes to provide four ante-natal check-ups so complications can be prevented. For instance, eclampsia is common among women in later stages of pregnancy and manifests as high blood pressure. If doctors detect this early, they can put the woman on hypertension medicine till the foetus is removed through a caesarean section,” said Lindsay Barnes of Jan Chetna Manch who has worked among rural women in Bokaro villages since 1993.

Godda hospital that caters to the district’s population of 13 lakh has 40 beds and two ambulances. It started providing facilities for a caesarean section only last year. It was supposed to get a blood bank in 2000 but the space marked for this is being used as National Polio Surveillance Project office and doctors’ restrooms. In case of complications, patients are referred to the government medical college in Bhagalpur in Bihar, 70 km away. Godda should have a Mamta Vahan in each of its 201 panchayats but only 111 vehicles have been hired right now as officials say they could not find vehicle owners in all panchayats.

Earlier, a government enquiry was done in 2011 after 25-year old Mary Hasda in Tetaria village had reported that staff at the district hospital left a cloth inside her birth canal after she delivered a stillborn baby. She had reported that the hospital staff asked for Rs 500 bribe after she gave birth to the stillborn baby.

“The enquiry team interrogated the family – which spoke only Santhali – as if they had done a crime,” said Soumik Banerjee, a researcher who documented 23 maternal deaths of women 18-23 years of age in the two blocks between April 2011 and March 2012 – an average of nearly two deaths a month.

The full report was published in The Hindu on September 7.
A week later, taking suo moto cognizance, National Human Right Commission asked Jharkhand government to respond in four weeks. Jharkhand government is yet to respond.

When public health schemes turn anaemic

Since 2010 when the central government discontinued the supply of medical kits containing Iron Folic Acid, vitamin A, zinc tablets and Oral Rehydration Solution packets under National Rural Health Mission (NRHM) to states, village anganwadis and health centers have turned anaemic pregnant women and adoloscent girls away.

These are essential for reducing anaemia and birth defects which affect 69.5 percent women and girls between 15 and 49 and over 70 percent of all children below five in Jharkhand – the highest levels of anaemia according to National Family Health Survey 2 and 3 done in 1999 and 2006.

“There are eight pregnant women and several adolescent girls in the village but we do not have any stocks of tablets,” says Rukmini Devi, the anganwadi sevika in Bhandara. Photo by Manob Chowdhury

“There are eight pregnant women and several adolescent girls in the village but we do not have any stocks of tablets,” says Rukmini Devi, the anganwadi sevika in Bhandara. Photo by Manob Chowdhury

Over six lakhs, or nearly 12 percent, of children below six years of age in Jharkhand suffer from severe malnutrition. Children born underweight due to anaemia among women is a significant factor. Under a central scheme, 100 IFA tablets are to be given all pregnant women and weekly IFA supplements are to be provided to all adolescent girls between 16 and 19 years of age. Recently, adolescent boys have also been included in the scheme.

“District civil surgeons were asked to procure this but some bought expensive non-generic IFA tablets and exhausted funds. A month back the tender process was completed and now those will soon be supplied to all districts,” said Dr Praveen Chandra, Director NRHM in Ranchi. In 2011, former health minister Bhanu Pratap Shahi, former health secretary Pradeep Kumar and other department officers were named as accused in a Rs 130-crore NRHM scam related to purchase of medicines. The CBI is now investigating the case.

The state Social Welfare, Women and Child Development (SWWCD) website shows a budget of Rs 2.53 crores for purchase of “medicine kits” but officials in Ranchi say this meant only for purchase of first-aid. The department launched the Rs 70 crores Jeevan Asha program last month with focus on reducing malnutrition but this too does not have a component especially for IFA tablets.

At Khunti

More than two years after she gave birth to her youngest daughter, Shanti Oraon, an adivasi farmer in Bhandara village in Khunti district has been unable to resume working in the fields. “She has breathing trouble, and could not start walking even after she turned two and a half years old. I must stay at home with her all the time,” she says of her infant daughter lying wrapped in a bedsheet on the floor. Across the road from Shanti Oraon’s house, Pooja Devi watches her one-year-old play with a plastic bangle in her mouth. “She weighed less than three kgs when she was born. She falls ill often even now,” she says.

Bhandara lies a little over 30 kms from Ranchi, the state capital, and is on the outskirts of Khunti’s district center and market. Despite good connectivity with roads and easy accessibility, Bhandara and the adjoining villages Belahatu and Chikor have not received supplies of IFA since 2009.

Shanti Oraon recounts that during her four pregnancies she received IFA tablets, each costs less than 20 paise, only before the birth of her second child more than four years ago but none before the birth of three of her children. “There are eight pregnant women and several adolescent girls in the village but we do not have any stocks of tablets to give them,” said Rukmini Devi, the anganwadi sevika in Bhandara as she prepared a meal of rice and soyabean nuggets for the seven children below six years of age who turned up for lunch that afternoon from among the 89 enrolled as per the anganwadi charts.

“Over 3/4thd of girls between 15 and 19 are not in schools so there must be focus on how to reach them. In our surveys we have found that even when pregnant women get IFA tablets there are beliefs that these tablets can make your child darker – because the iron tablets can make the stool darker. Encouraging women to take tablets will require regular counseling,” said Job Zachariah, Head UNICEF Jharkhand.

Read the full story in The Hindu here.

In Jharkhand, entire hamlets wait for ration cards

Bhojan Adhikaar Yatra, a campaign demanding a comprehensive food security Bill, reached Jamshedpur on Tuesday after traveling through Bihar, Chhattisgarh and West Bengal.

In 2009, the Jharkhand Government reduced the price of rice to Re.1/kg and entitled families with Antyodaya cards to get rice for free. But the distribution of Below Poverty Line (BPL) cards continues to be based on a survey by the Bihar Government 15 years ago, and many poor families are still excluded from PDS. The Government did a fresh survey last year, but the date for issuing fresh ration cards based on this survey had been shifted thrice this year.

In districts adjoining Ranchi, including East Singhbhum and Lohardaga, which are among 35 districts most affected by Left Wing Extremism and have been identified by the Central Government for “focused development,” a majority of villagers still don’t have ration cards.

“Even one family doesn’t have a ration card. They did a survey in our village last year, but none of us got a ration card,” said Kanhu Hembrom, Gram Pradhan of Musabani, a hamlet of 70 households adjoining the CRPF Battalion 193 camp at Ghatshila in East Singhbhum. At Kekrang village in Lohardaga district, parts of which lie in the hills and are accessible only on foot, only 20 out of 110 households have a ration card. Nagesiya says he migrated to work in a brick kiln in Tripura for one year, but returned when he earned only Rs. 6,000 after working for eight months. In a 2011 survey — done by economist Reetika Khera, who supports the RTF campaign and teaches at the Department of Humanities & Social Sciences of IIT-Delhi — in the districts of Dumka and undivided Ranchi, only 25 per cent of households surveyed said they were getting their full PDS entitlement. More than a quarter of the households reported that one family member missed meals in the previous three months, and 12 per cent said that they hadn’t consumed daal even once the previous week.

Read the full report here.