A deadly stigma!

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