BENARASI DEATH NET
A cluster of villages engaged in weaving the exquisite Benarasi sarees is in the midst of a serious health crisis. More than 1 lakh people from this once prosperous region have fallen prey to aggressive tuberculosis. Poor living conditions, working in dark rooms and constant inhalation of minute silk threads have weakened the lungs of these artisans. With an average monthly income of not more than Rs3,000, it is a living hell for the skilled weavers. Biswajeet Banerjee brings you a report from Varanasi
Four-year-old Anwar lies on a plastic mat in a one-room house in Lohata, Varanasi, his eyes closed. Just as you admire his deep sleep he gets into a coughing fit. His mother Noor Bano, 34, rushes to his side, picks him up and takes him to the verandah. She returns after a few minutes wiping Anwar’s face with a dirty towel and lays him on the mat again.
“He coughs regularly and spits blood. He has TB,” Noor tells you. “Usko dekh kar dukh hota hai. Itni chhoti see umar mein itna dard. Allah kab apni meherbani hum par karega yeh usko he pata hai,” she says, running her fingers through her ailing son’s hair.
Noor, a widow and mother of three, is a weaver. She lives with her in-laws who were weavers too, but poor eyesight and oldage forced them to give up work. So the family of six, including her in-laws, is dependent on her. Noor embroiders saris to eke out a living. As the income is not regular, she doesn’t have enough money to provide two square meals to the family, let alone buy medicines for her son. Her monthly income is approximately Rs3,000.
“Is nanhe se faristey ki jaan khatre mein hai. Hum uska dard roz dekhte hain. Doctorbolte hai ki yeh kamzor hai khurakh badhao, sabzi aur phal khilao. Par hum do waqt ki roti nahin kha pateh, iske liye kahan se doodh aur ande laayen? Ab toh Allahmalik hai,” Noor’s mother-in-law Mumtaz Ali says.
Neighbours tell you that Anwar used to be a shy child always clinging to his mother before he was diagnosed TB in June 2013. When his mother would go to work, he would be seen sitting on the stairs playing with a tail of a stuffed animal brandishing it like a sword.
“The world crashed around me when my father-in law broke the news that Anwar has TB. Anwar ko khel kood bahut achcha lagta hai. Mujhe pata hai ki TB waley bachchon ke saath log kaisa bartaav karte hain. Ab uski zindagi bas ek kamre mein band ho kar reh gayee hai,” Noor says with an air of reconciliation.
Her neighbour and friend Rashida, 35, also has TB. Mother of four, she is weak and suffers from intense joint pain. Her husband, a weaver, is also ill. “We have four children. I want them to go to school but have no money to purchase books. Padhai toh bahut door hai, we do not have enough money to even buy food,” Rashida say.
Noor and Rashida are not the only ones from this weavers’ colony in Lohata of Kashi Vidyapeeth block in Varanasi who have TB. NGOs working with these families say that out of the 2 lakh people living here, at least half have TB. They live and work in small rooms where ventilation is poor. And if one person of the family is infected, the disease spreads fast among other members. This area, once known for its colorful silk sarees, is now infamous as the “TB mohalla”.
So, what is the reason for such a high rate of TB in this area? According to Dr JN Banavalikar, vice-chairman of the TB Association of India, poverty and malnutrition are the major factors. “But the fact that so many people in Lohata are weavers is significant too. Thousands of saree weavers work in cramped rooms, inhaling minute threads that weaken their lungs and make them vulnerable. They work in poorly ventilated rooms for hours and that spreads germs very fast,” Banavalikar explains.
“The plight of these families is a soiree of Government neglect, exploitation and starvation. These families need Government help at the earliest. If left to their fate, they will all die,” Lenin Raghuvanshi of People’s Vigilance Committee on Human Rights, a human rights organisation says.
The success of the Tuberculosis treatment depends upon hygiene, nutrition and proper healthcare facilities. Due to the failure of Government-sponsored health centres and the inability of families to provide for proper food, TB has spread uncontrollably in this community.
According to the Revised National Tuberculosis Control Programme’s 2007 report, the usual victims are migrant labourers, slum dwellers, residents of backward areas and tribal groups. Known as the disease of the poor, TB often appears where malnutrition, shanty housing and overcrowding are common. Despite treatment, living and working in a small space without ventilation can seriously affect patients. It is, therefore, no surprise that so many weavers who are working in closed spaces filled with dust and thrums (from their looms and cloth) for a prolonged period contract TB. Besides, a cure requires consistent intake of drugs, which is difficult to manage for most patients.
A report on suicide and malnutrition among weavers in Varanasi was prepared by the People’s Vigilance Committee on Human Rights in collaboration with ActionAid, an international anti-poverty agency. It said that about 175 weavers fell prey to financial hardships since 2002. The Economic Survey (2009-10) estimates that over 50 per cent weavers’ children are malnourished. There is a high prevalence of TB, particularly multi-drug resistant tuberculosis (MDR-TB). The survey also said that while the human development index of India is steadily improving, weavers and their children in Varanasi continue to die either by committing suicide or succumbing to malnutrition.
Farzand Ali, who has two sons, tells you that he borrowed Rs50,000 from his relatives when the condition of his 21-year-old son Ghulam deteriorated in 2012. He was referred to the super speciality Lala Ram Swarup TB Hospital in Lucknow. “Chaar maheene ke treatment ke baad hum wapas aageye. Doctor ne bola ke bete ko aise TBhai jiske liye medicine nahi hai (the son has a deadly strain of multidrug-resistant TB),” Ali tells you.
Back home, Ghulam is being treated in a State-run hospital, but Ali says the hospital is not giving him the more expensive medication which his son needs. It costs Rs10,000 per month. “Itna paisa kahan se laaoon?” he asks. Farzand earns Rs2,500 per month.
The multidrug-resistant TB (MDR-TB) is caused by bacteria that are resistant to most effective anti-TB drug like isoniazid and rifampicin. MDR-TB can take up to two years to treat and the treatment is 100 times more expensive. If the medicine to treat MDR-TB is mismanaged, further resistance occurs, leading to extensively drug-resistant Tuberculosis.
Since Lohata is dotted with dilapidated houses with wooden spools and yarn strewn around in the verandah of almost all the houses, the problem gets compounded. But why is it that the once prosperous village has turned into such darkness and despondency? Why is it that the once the busy road to this village has no traffic? All autos and rickshaw-pullers refuse to come here.
A decade back, handlooms were replaced by machines. As a result, the weavers lost a large chunk of their income and pushed to starvation. Most families don’t know when and from where their next meal will come.
Shruti Nagvanshi, a social activist who works with TB patient, tells you that the condition of these people is pathetic. They are all poor. Their children are malnutritioned. They do not go to schools. Government help is there but scant.
“All men here are weavers. They do not have land so they rely only on weaving. Today’s fashion has replaced the demand for the kind of saris the region is known for. Lack of raw material is another reason why this business is no longer lucrative,” Nagvanshi explains, adding that some weavers who have BPL cards don’t find the going so tough.
“Those who don’t have the card find it difficult to survive. Life is a living hell for them. Their food and income is irregular. The only thing in their life that is constant is the TB medicines from the auxiliary nurse midwives or TB health visitors,” Nagvanshi says.
However, locals have a different take on the supply of medicines. “Hamare bachchon ko TBhai. Sarkar bolti hai ki dawa karo. Uske liye paisa chaheye. Kabhi kabhi sarkar ki taraf se dawa milti hai par hamesha nahin. Ab Rs3,000 maheena kamane wala kahan se paisa layega? Hum toh bas Allah ki meharbani par jee rahen hai,” Asgar Ali says. Relapses are common as well.
Azhar Hussain, 17, was infected with TB when he was six. His father Alam Gir initially took him to a private doctor but his case was referred to the State-run hospital when he was detected with TB. After treatment for a few years, he was declared clean but on June 2013, he fell ill again.
“I got scared and took Hussain to the doctor. On August 31, 2013, tests were carried out on him and it was found that he was infected with TB again. The old routine is back now — taking medicines. Everyday Hussain has to go to the local TB health worker to get medicines. I don’t know how long this will continue,” Alam says.
Aswani Kumar is another relapse case. After being declared clean, he was infected with MDR-TB because of his chance encounter with someone who was carrying the same strain.
“I was identified as a TB patient almost six years ago. I took the Direct Observation Treatment from the health centre and was declared clean a year later. But one day, three years back, I started coughing and oozing blood. I realised I had developed TB again. Tests proved that this time it was MDR-TB,” Kumar says. How he got this strain of TB, he doesn’t know. “Must be someone I came in contact with,” he states.
India has the highest incidence of TB in the world. According to the World Health Organization’s Global Tuberculosis Report 2013, the country has 2.4 million TB cases. The report reveals that India also has the most missed TB cases of any country — 31 per cent of the global total of missed cases. In addition, out of the 22 high-burden countries, India saw the greatest increase in MDR-TB between 2011 and 2012.
At least 20 per cent of the people with active TB disease in India live in Uttar Pradesh. Also, according to the drug surveillance reports, 17 per cent of these TB patients could be drug-resistant.
So while various agencies continue to bring out reports on the number of people infected with TB in the country, over 72,000 people die every year of TB in Uttar Pradesh. “Of this, 12,900 people died in the weavers’ colony in 2011. This number rose to 13,700 in 2012,” Dr SP Dubey, tells you.
“It is strange to see so many TB fatalities from one small region of the State. It is an unusual phenomenon. It is shocking that the Government is not helping these poor people,” Banavalikar says.
With the Government turning a blind eye towards the plight of the weavers in the region people like Moin Azhar tell you that the weavers were once rich.
“Kaam bahut hua karta thha. Kabhi kabhi mana karna padta thha ya malik ko bolna padta thha ki samay lagega. Is liye paise bhi achchey milte thhey. Par phir machine aagayee. Haath ka kaam koi nahin karna chahata. Samay bhi lagta hai aur mehenga bhi hota hai. Dheerey dheerey kaam kum ho gaya. Ab toh kaam bhi nahin hai aur paisa bhi nahin. Sarkar lagta hai humein bhool gayee hai,” Azhar laments.
When Kotwa village emerged as ground zero of TB patients, the demand for a State-run hospital in the vicinity was raised. About eight years back, the Government constructed an Additional Primary Health Centre (APHC) here. The villagers were happy as they felt they would not have to travel a long distance, to the Kashi Vidyapeeth Primary Health Centre, for treatment. Time passed and the villagers waited for the hospital to start treating patients. But no such thing happened. The Government failed to appoint the medical staff. The result — the primary health centre turned into a dilapidated building. The iron gate was stolen the, boundary wall was broken and electric fittings damaged. The Rs7 lakh money spent on the hospital went down the drain.
The villagers rue the loss. When the construction of the hospital had begun they had hoped that the APHC would be converted into a Direct Observation Treatment Centre where TB patients would get free medicines. But today, the TB patients have to go to the Kabir Chaura Hospital or the primary health centre in Kashi Vidyapeeth for medicines. For a person to completely recover from TB, it takes approximately two years. The villagers have to make daily trips to these medical centres. Since the distances are long, the patients don’t go to collect their medicine. “Har baar jaane aane mein Rs50 lagta hai jo humein apne aap se dena padta hai. Agar hum log roz gayege toh ghar kaise chalega,” a TB patient undergoing treatment for the past six months says.
It is not just the lack of infrastructure but paucity of medicines that has caused a setback to UP Government’s resolve to fight TB. There are limited supply of drugs like rifampicin and Isoniazid, the first-line drugs for treating TB. A senior Health Ministry official said that most paediatric departments in the hospitals have run out of medicines and parents can’t get their child treated in a Government-run hospital now.
State officials blame the Centre for this. “It is the Centre that procures anti-TB drugs and it has failed to do so since 2012,” an official tells you. Drugs like streptomycin have not been bought for the last two years. Interestingly, the office of the Joint Director TB in Lucknow received a letter from Dr KS Sachdeva, additional DG (TB) in April 2013, stating that since there was a delay in supplies, the States should go ahead with emergency procurement of rifampicin. However, officials say that they don’t have the funds to buy the drug. So while the blame game continues, it is the people who are suffering. “A TB patient needs timely medicines. If there is a break, there is danger of relapse. Even if we have the funds to buy the drugs, the concern is the timeline needed for acquiring medicines today. Tenders need to be called for. Even if this process is done at the earliest, manufacturers will take around six months to deliver the drugs,” the official said.
Why is it that the State machinery didn’t act in April last year when they got the letter? None has an answer to this question.
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