A youth in Sattari in the Western State of Goa, India believes that TB kills and is not curable. In a remote village in Sanguem, an Anganwadi worker has no access to patients, due to the fear that she may spread the news that they have TB in the village. Anil Sawant stopped the magic pills because he had to travel 25 kms to the health centre for his medicines. These are some of the scary cases that plague the inner areas of the state. PREETU NAIR walks into the heart of Goa, into a different world. For the people living there, TB is not just a public health problem, but a social stigma .
TB kills. We don't even drink water from a house if there is a TB patient living there. What if I get TB after drinking the water?" asked Shidhu Varak, an 18-year-old literate youth from Dhangarwada, Poriem in Sattari. His friend, Dilip Gaonkar from Gholwada, Poriem added, "We don't even get married into a family if we know that anyone in the family had TB. It is a contagious disease and no medicine can ever cure it."
On the other hand, Nago Bhavdan from Corla Moti in Quepem has never heard of TB. His son, a student of standard IX has read about infectious TB and strongly believes that it is incurable. Believe it or not, TB still continues to be a dreaded, incurable disease caused due to a curse or sin in rural Goa. "
TB is not just a public health problem. It is a social problem and the patient is stigmatised and isolated in society. The failure of the health authorities to create awareness about the advances in treatment of TB has added to the woes," said Rajendra Kerkar, a school teacher and grassroots worker in Sattari taluka.
Despite social mobilisation, the TB control programme has not been able to break the myth that TB is contagious nor has been able to spread the message that there are other forms of TB besides pulmonary TB. They have yet to work to improve access to DOTS services in remote areas and overcome stigma of TB and discrimination against TB patients.
"TB is a dirty secret everyone wants to hide. In my village, three men died of TB in the last two years. They didn't take regular medicines and drank alcohol. Whenever I used to go to advise them, they would insult me and ask me who it was that told me that they have TB," revealed an anganwadi worker from a remote village in Sanguem taluka. Under the Revised National Tuberculosis Control Programme (RNTCP), modes of observation in villages are often Anganwadi workers who have no access to TB patients, due to the fear that she may spread the news that they have TB in the village and they will be stigmatised.
Further, talking on the condition that she is not quoted, she said, "Most of the people in and around the mining areas have symptoms of pulmonary TB. But they don't go for treatment as they believe that TB is not curable."
"The effort to stop the spread of TB and to ensure a TB free world is curbed by social stigma attached to the disease," admits Dr Bidan Das, State TB Officer, GSTCS. Even Dr Arvind Salelkar, Director of Health Services admits that the effort of changing the mindset of all persons concerned with TB has been a daunting task but yet intensive IEC efforts, training and retraining of staff we have taken a giant leap forward in tackling TB as its very roots.
But official facts are different from field reality. Even as officials at the Goa State Tuberculosis Control Society (GSTCS) demonstrate that DOTS is having its impact and excellent progress has been made with DOTS with case detection and treatment success rates, people in the remote villages in Goa live without easy access to the magic pills.
Anil Sawant was put on DOTS in 2005. Directly Observed Treatment Short-course (DOTS) is an effective strategy for curing TB, which involves monitoring a patient for six months. The monitoring is crucial because failure to complete the drug treatment can lead to multi-drug resistant TB, which is extremely difficult to cure.
But within three months he stopped the treatment. Reason? "I was feeling better and I couldn't leave my shop and travel every alternate day to go to Hospicio Hospital, Margao, which is 25 kms away from my village for medicines," said Anil Sawant, who runs a tea stall in Dadolem, Sanguem taluka. Recollecting the days of ordeal he says, "I would leave at 6.45 am by bus and return at around 1 pm. This affected my business."
Even his 60-plus mother is suffering from infectious pulmonary TB, but she refuses to go to Margao every alternate day for medicines, which is given free of cost. "She is week but she feels weaker after the travel and therefore has stopped the medicines midway," he added.
Despite World Health Organisation's clear regional strategic plan (2000-2015) to sustain and enhance DOTS to reach all TB patients, improve case detection and ensure treatment success, the patients continue to drop-out of DOTS and nobody no filed visitor visits them to facilitate defaulter retrieval. If the so-called "success" of (RNTCP) is due to its directly observed treatment, then in rural Goa, the directly observed treatment has led to incidents of drop-outs as patients find it difficult to travel miles for treatment.
Worse still is the fact that with the primary health centres and sub-health centres failing to meet the need the health care needs of individuals and families in the community, people are forced to travel long distances to go to the district hospital. ""Earlier we used to go to the Community Health Centre at Savordem, which is 26 kms away from our village. But it doesn't have doctors and adequate equipments. We are made to wait for long hours, only to be sent back without treatment. Due to this we prefer to go to a private doctor," revealed Satyavan Dessai from Sulcorna in Quepem taluka.
Dr Debabar Banerji, Professor Emeritus, Centre of Social Medicine and Community Health, JNU believes that the problem with RNTCP is that it is not being implemented not being fully implemented. "RNTCP is responsible to create a condition wherein the patients take the pills regularly.
Unless RNTCP ensures that person as a whole is dealt with, it has no meaning," he said. Dr Banerji further added, "There is a group of TB patients who are harassed by poverty and alcoholism. For them TB is a minor problem. The solution lies in solving the major problems of life along with treating TB".
No wonder despite claims of intensification of supervision and monitoring, rigorous record keeping and thorough follow-ups, people like the Sawant's continue to drop-out of the treatment midway.
Free pills, but no food
She doesn't have food to eat but gets the magic pill free of cost. Jani Singadi's was put on DOTS when she was tested sputum positive in January 2006. But the moment, 65-year-old Jani started treatment she felt weaker and had severe stomach ache. Added to that were the multi-layered crisis within the family: three orthopaedically disabled sons, surplus of hunger, no money, an illegal house gifted by a few philanthropists, rising debt, etc.
Unable to deal with the increasing health problems and with no one to take her to the sub-health centre, which is 2 km away at Nanoda, Bicholim, she stopped taking pills for a month. "I couldn't go because I was feeling weak. No field officer ever came to visit me. I started medicines again after sometime when I became seriously ill," she accepts candidly. Now after a year, she is again tested sputum positive at Goa Medical College.
This despite Dr VR Muralidharan, District TB Officer, North Goa claims that we have default retrieval action to retrieve the patient back on track to take medicines. "Our success rate in retrieving patients is very high," he added.
NO TIME FOR HEALTH
For the last three months, Shanti Shetikar has been feeling week. She has had consistent cough since last two months and has lost lot of weight-all symptoms of pulmonary TB. She went to the nearest sub-health centre at Kevona were the doctor gave her iron tablets. But all this has not helped. She has not bothered to go back to the sub-health centre.
"The doctor only comes once a week and that too for an hour. So it's really difficult to meet him. Moreover, we are very poor and no one looks at us in the government hospital. We are made to wait for long hours and then sometimes send back without check-up due to lack of facility. Because of this we prefer to go to a private doctor," she reveals.
So she went to a quack in the village who gave her six vitamin injections stating that she was feeling weak because she was vitamin deficient. However, it has not helped. For long she has been planning to go to for a proper medical check-up at the government hospital in Margao, which is nearly 30 kms away from her mining village in Quinamol, Sanguem, but she has not got time.
"What can I do? Everyday I have to go to the market to sell vegetables. The day I don't go, there is no money at home to feed to two hungry kids," she reveals. Shanti cultivates vegetables and sells them in the market to earn a living.
No tea in TB!
Vithal Parwadkar, who runs a tea stall in at Assnora, Bardez taluka, dilemma is strange. Few villagers have raised objections to him serving tea to "known" TB patients. "People tell me, 'He has TB and you are serving him tea in your stall. We don't want to have tea in the same glass, get us a new set of glasses'," he added.
Strange enough, people are so scared of TB that they have isolated one family in the village because the head of the family died of TB and the rest of the family members are frail and constantly coughing. Vithal reveals that the elder daughter had to be married off to a widower, as no one was ready to marry into the family. GT tried to meet the family, but in vain.
TB kills 1 person every minute in India
-- In Goa, more than 1 person die of TB every month.
- Goa has a high prevalence of tuberculosis as compared to other states
- Annual risk of TB infection is 1.5 % in rest of India, while in the Western region, especially Goa, the risk of TB infection is 1. 9 %
- 20 lakh people in Goa are at present suffering from pulmonary TB, of which nearly 5000 are infectious.
- An average 2,100 new TB cases are detected every year, of which 50 per cent are sputum positive.
The article appeared in Gomantak Times, Panjim Edition dated April 20, 2007This article is written with the support of PANOS STOP Media Fellowship
Friday, April 20, 2007
No DOT(ted) lines for them…HIV vs TB
Not just homes, but hopes were razed on June 14, 2004. Further pushed into a life of poverty, added with their high risk behaviour, have made commercial sex workers fall easy prey to TB and HIV. PREETU NAIR walks through the narrow lanes of Baina to understand the extent of the problem.When earthmovers and bulldozers tore through, brutally and indiscriminately obliterating Shenaz's home in Baina in the western state of Goa, India on June 14, 2004, she didn't breakdown. She didn't cry even when she had to push her minor daughter into commercial sex work to pay the house rent. After all, she had learnt to tackle poverty and live with the little opportunities and choices that life bestowed on her.
Now, Shenaz is in total despair. She finds herself in a vicious circle of stigma, economic hardship and discrimination, aggravated by the fact that she was detected with TB in February. "Life has changed for me. I have lost weight, feel weak and easily tired," said Shenaz. Being detected with TB and put on DOTS was just the beginning of her woes.
Recalling the happenings of the past few months, Shenaz said that she was asked to take medicines for six months from the local STD clinic at Baina. "I got medicines for a week. Later, when I went to the clinic, I was insulted and denied medicines because there was no doctor or nurse on duty. This went on for more than a week and my condition deteriorated and I had to be hospitalised," she revealed.Shehnaz's first time to the STD clinic was a bitter experience. She says, "I am going to the STD clinic because I get medicines free of cost."
Policy makers claim that the DOTS strategy is based on the availability of free, quality anti-TB drugs for all actively infected patients through the public health network, the reality is quite different. People like Shehnaz are denied easy access to treatment because they belong to a stigmatised group in Baina.
However, officials at the Goa State Tuberculosis Control Society (GSTCS) blame the failing primary health system and shortage of doctors in the health centres for such goof-ups. "At present, there is no doctor at the Baina STD clinic. We are trying to cover up for it with the help of auxiliary workers and they are doing good work, but there is an obvious lack of doctor, which shows," explained Dr VR Muralidharan, District TB Officer, North Goa.
However, Shenaz doesn't understand these arguments. All she knows is that her health deteriorated because she, a single breadwinner, didn't get medicines on time. "It is really difficult times for us. Each time I have fought to rebuild my life. Now I am tired," she added.
OUT OF REACH
Dr Maryam Shahmanesh, Clinical Research Fellow and Clinical epidemiologist for EFA, University College London, reveals that their studies have shown that the forced eviction of Baina has made the women much more mobile than before. "If they had TB it would have been very difficult for them to access DOT services and even more difficult for services and NGOs to find them. An additional factor is that the demolition led to a further erosion of the women's trust towards both public health services as well as NGOs for the Baina women felt let down by these services/agencies," she said.
Although there are no accurate estimates of TB in Baina, Dr Maryam believes that given the high prevalence of HIV amongst the Baina "sex workers" and the higher vulnerability to TB and HIV, it is very likely that the prevalence of TB in the women of Baina would have been much higher than the general population.
Arun Pandey, Director, ARZ, an NGO working with trafficked victims in Baina admits that many women in Baina didn't get the benefits of the Revised National Tuberculosis Control Programme because it started in Goa in September 2004, a few months after the Baina demolition. "Now it is also difficult for NGO's to have access to TB patients, as the trafficked victims have spread around. Their behavioural pattern, fear of discrimination and stigma make it difficult for them to come for treatment," said Arun.
NO DATE WITH DOTS
When a physically weak Rupa was taken for a sputum test at the Cottage hospital at Chicalim, she was sent to the TB hospital at Margao. At the TB hospital, she was tested sputum positive. The doctor advised her to be admitted for monitoring. However, the condition placed on her was: She should arrange for someone to stay with her at the hospital.
"Often patients are dumped at the TB hospital for months together because no one is ready to take them back home due to stigma. We wanted to fix responsibility and therefore we insist that someone should accompany the patient to the TB hospital and stay with them. This ensures family support and takes care of patient's needs besides the nursing part," added Dr Muralidharan.
"As no one was ready to stay with me, I made an excuse that my little child was alone at home and as there is no one to look after him, I would prefer to stay at home," she said. The doctors agreed and put her on DOTS. A month later, she went on a date (that's outstation trips for a period of 10 or 15 days for commercial sex work) during which she stopped the treatment. Now back in Goa, she is admitted in the TB hospital, struggling hard to survive.
"When you have the strong medicines to cure TB you need to have nutritious food and vitamin supplements. For this, they have to prostitute and to prostitute they drink alcohol. Alcoholism added with the kind of job they indulge in, ensures that they have no discipline in life. Further they are stressed out, depressed and have suicidal tendencies as they have no expectation from life, so it is difficult to convince them to continue with the medicines", observed Pandey.
Officials at GSTCS admit that dropouts are high amongst these vulnerable sections. "Sometimes they don't reveal their proper address. Neither do they inform us when they go out of station. This is the case with many here. Stopping the medicines abruptly and re-starting has resulted in many cases of drug resistance in Baina," admitted Dr Bidan Das, State TB Officer, GSTCS.
HIV V/S TB
In a late night raid at Baina on July 24, 2006, Laxmi was rescued and produced by the police before the Mormugao Deputy Collector and SDM, who remanded her to protective custody. The next day, the SDM ordered the police to take her to GMC for medical examination, which was delayed.
On July 27, the SDM learned from an NGO that Laxmi was receiving DOTS treatment and she had missed the medicines because she was sent to the State Protective Home at Merces, and immediately passed an order stating that Laxmi be allowed to take any medical treatment. Few days later, the in-charge of Protective Home wrote to the SDM stating that Laxmi has revealed that she has TB and HIV and is bleeding, which is risky for others and there is no medical staff to give her medicines nor any vehicle to transport her to the hospital in case of an emergency.
"With this case I was put in a peculiar situation. Immediate medical check-up is essential under section 15 (5)(A) of ITPA and I had asked for her to be sent for medical check-up. Had we got the reports on time, there wouldn't have been any problem. Further, I was in a fix once the State Protective Home in-charge expressed their inability to keep her and so I had to seek the help of an NGO ASRO," stated SDM Levinson Martins.
Despite the HIV pandemic presenting a massive challenge to the control of TB at all levels, there is no joint effort between various agencies to decrease the burden of TB and HIV especially amongst the vulnerable section and ensure timely treatment. At the moment, the only joint effort in Goa is between Goa State AIDS Control Society and GSTCS, but their role is also very limited.
(Few names have been changed to protect the identities of the individuals)
The article appeared in Gomantak Times, Panjim Edition dated April 13, 2007This article is written with the support of PANOS STOP Media Fellowship
Now, Shenaz is in total despair. She finds herself in a vicious circle of stigma, economic hardship and discrimination, aggravated by the fact that she was detected with TB in February. "Life has changed for me. I have lost weight, feel weak and easily tired," said Shenaz. Being detected with TB and put on DOTS was just the beginning of her woes.
Recalling the happenings of the past few months, Shenaz said that she was asked to take medicines for six months from the local STD clinic at Baina. "I got medicines for a week. Later, when I went to the clinic, I was insulted and denied medicines because there was no doctor or nurse on duty. This went on for more than a week and my condition deteriorated and I had to be hospitalised," she revealed.Shehnaz's first time to the STD clinic was a bitter experience. She says, "I am going to the STD clinic because I get medicines free of cost."
Policy makers claim that the DOTS strategy is based on the availability of free, quality anti-TB drugs for all actively infected patients through the public health network, the reality is quite different. People like Shehnaz are denied easy access to treatment because they belong to a stigmatised group in Baina.
However, officials at the Goa State Tuberculosis Control Society (GSTCS) blame the failing primary health system and shortage of doctors in the health centres for such goof-ups. "At present, there is no doctor at the Baina STD clinic. We are trying to cover up for it with the help of auxiliary workers and they are doing good work, but there is an obvious lack of doctor, which shows," explained Dr VR Muralidharan, District TB Officer, North Goa.
However, Shenaz doesn't understand these arguments. All she knows is that her health deteriorated because she, a single breadwinner, didn't get medicines on time. "It is really difficult times for us. Each time I have fought to rebuild my life. Now I am tired," she added.
OUT OF REACH
Dr Maryam Shahmanesh, Clinical Research Fellow and Clinical epidemiologist for EFA, University College London, reveals that their studies have shown that the forced eviction of Baina has made the women much more mobile than before. "If they had TB it would have been very difficult for them to access DOT services and even more difficult for services and NGOs to find them. An additional factor is that the demolition led to a further erosion of the women's trust towards both public health services as well as NGOs for the Baina women felt let down by these services/agencies," she said.
Although there are no accurate estimates of TB in Baina, Dr Maryam believes that given the high prevalence of HIV amongst the Baina "sex workers" and the higher vulnerability to TB and HIV, it is very likely that the prevalence of TB in the women of Baina would have been much higher than the general population.
Arun Pandey, Director, ARZ, an NGO working with trafficked victims in Baina admits that many women in Baina didn't get the benefits of the Revised National Tuberculosis Control Programme because it started in Goa in September 2004, a few months after the Baina demolition. "Now it is also difficult for NGO's to have access to TB patients, as the trafficked victims have spread around. Their behavioural pattern, fear of discrimination and stigma make it difficult for them to come for treatment," said Arun.
NO DATE WITH DOTS
When a physically weak Rupa was taken for a sputum test at the Cottage hospital at Chicalim, she was sent to the TB hospital at Margao. At the TB hospital, she was tested sputum positive. The doctor advised her to be admitted for monitoring. However, the condition placed on her was: She should arrange for someone to stay with her at the hospital.
"Often patients are dumped at the TB hospital for months together because no one is ready to take them back home due to stigma. We wanted to fix responsibility and therefore we insist that someone should accompany the patient to the TB hospital and stay with them. This ensures family support and takes care of patient's needs besides the nursing part," added Dr Muralidharan.
"As no one was ready to stay with me, I made an excuse that my little child was alone at home and as there is no one to look after him, I would prefer to stay at home," she said. The doctors agreed and put her on DOTS. A month later, she went on a date (that's outstation trips for a period of 10 or 15 days for commercial sex work) during which she stopped the treatment. Now back in Goa, she is admitted in the TB hospital, struggling hard to survive.
"When you have the strong medicines to cure TB you need to have nutritious food and vitamin supplements. For this, they have to prostitute and to prostitute they drink alcohol. Alcoholism added with the kind of job they indulge in, ensures that they have no discipline in life. Further they are stressed out, depressed and have suicidal tendencies as they have no expectation from life, so it is difficult to convince them to continue with the medicines", observed Pandey.
Officials at GSTCS admit that dropouts are high amongst these vulnerable sections. "Sometimes they don't reveal their proper address. Neither do they inform us when they go out of station. This is the case with many here. Stopping the medicines abruptly and re-starting has resulted in many cases of drug resistance in Baina," admitted Dr Bidan Das, State TB Officer, GSTCS.
HIV V/S TB
In a late night raid at Baina on July 24, 2006, Laxmi was rescued and produced by the police before the Mormugao Deputy Collector and SDM, who remanded her to protective custody. The next day, the SDM ordered the police to take her to GMC for medical examination, which was delayed.
On July 27, the SDM learned from an NGO that Laxmi was receiving DOTS treatment and she had missed the medicines because she was sent to the State Protective Home at Merces, and immediately passed an order stating that Laxmi be allowed to take any medical treatment. Few days later, the in-charge of Protective Home wrote to the SDM stating that Laxmi has revealed that she has TB and HIV and is bleeding, which is risky for others and there is no medical staff to give her medicines nor any vehicle to transport her to the hospital in case of an emergency.
"With this case I was put in a peculiar situation. Immediate medical check-up is essential under section 15 (5)(A) of ITPA and I had asked for her to be sent for medical check-up. Had we got the reports on time, there wouldn't have been any problem. Further, I was in a fix once the State Protective Home in-charge expressed their inability to keep her and so I had to seek the help of an NGO ASRO," stated SDM Levinson Martins.
Despite the HIV pandemic presenting a massive challenge to the control of TB at all levels, there is no joint effort between various agencies to decrease the burden of TB and HIV especially amongst the vulnerable section and ensure timely treatment. At the moment, the only joint effort in Goa is between Goa State AIDS Control Society and GSTCS, but their role is also very limited.
(Few names have been changed to protect the identities of the individuals)
The article appeared in Gomantak Times, Panjim Edition dated April 13, 2007This article is written with the support of PANOS STOP Media Fellowship
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