The highly motivated TB control programme in India relies on primary health care - but it's too weak to cope
Rupa Chinai was India's first health correspondent. She resigned as health editor of The Times of India in Mumbai over a year ago, to investigate and document the real health issues of India, particularly in the tribal areas of the North-East. Her evidence tells what deep challenges face India's health system, despite the expanding economy. Here she argues that primary health care in India must be revolutionized if the Revised National Tuberculosis Control Programme, launched in 1997, is to succeed. Her story of a tuberculous woman, Hafeeza Begum, who could not afford treatment and developed drug-resistant TB, and of the neglect of health care among the tea workers, illustrates why.
>by Rupa Chinai
ASSAM , INDIA: When Hafeeza Begum, age 28, was brought in a rikshaw to the Sipajhar Primary Health Centre in Assam, she was in a state of collapse. Hailing from a poor Assamese Muslim family in Muslim Gopha village, around five kilometres from the health centre, Hafeeza was a case of relapsed tuberculosis. She represented the very patient that India's Revised National Tuberculosis Control Programme (RNTCP) says it is targeting to detect and cure. But Hafeeza’s struggle to access this programme is a telling story of why India’s TB programme fails to reach those who desperately seek its help.
India 's north-eastern states are amongst the most neglected in the country in terms of health services and basic development. An examination of the TB control programme in Assam provides an insight to why Indian health policy fails to make a difference in the lives of communities here or elsewhere. While millions of dollars are pumped into such stand-alone vertical health programmes, there is little hope of positive outcomes when there is no primary health care base on which they can stand.
India 's RNTCP managers claim they have a success story. A nationwide programme to detect TB patients and give them free drugs under the DOTS programme (Directly Observed Treatment - Short Course) was set in motion in 1997 at the behest of international donor agencies. In Assam it was launched April 2004. The programme envisaged a special focus on TB through the creation of a separate staff that would supervise and facilitate its implementation through the primary health care system. Improved methods of diagnosis and effective drugs promised a cure within six to nine months.
TB however, like most other illnesses, is rooted in a social context, say critics. Modern medicine considers itself impervious to the social factors that shape the health of individuals and communities. Technology and 'miracle drugs' have failed to deal with the roots of these illnesses which lie in addressing issues of poverty and social environment. Besides, treatment delivery cannot be ensured at ground level when primary health centres remain empty shells and the community has no faith in its services.
Hafeeza had studied up to class 10, and was married off in 1996. Poverty led her parents to arrange a marriage with a man who already had one wife. What he really needed was a servant who served him without wages. He was also infected by TB, and Hafeeza contracted the disease from him.
In 2003, when her chest pain and coughing became unbearable, Hafeeza's father took her for treatment at the main government hospital situated at Mangaldoi. The Sipajhar Primary Health Centre comes under the jurisdiction of Mangaldoi sub-division in Darrang district of Assam.
While the then prevailing National TB Control Programme prescribed a standardised regimen of five drugs (as does the present RNTCP), only two of these drugs were then available free from the hospital. The rest had to be purchased by the patient. Hafeeza received 45 injections over 17 days in the Mangaldoi hospital, but the cost of all the other drugs, plus the costs of transport, had already mounted to Rs 10 000 (US$ 250) and Hafeeza was forced to abandon treatment.
Feeling better initially, Hafeeza returned to the punishing regimen in her husband's home, but two months later she was back where she had started. Afraid that he would be held responsible for her deteriorating health, Hafeeza’s husband sent her back to her parent’s home.
Hafeeza was now a ‘relapsed’ case of TB and had to purchase even more expensive, second-line drugs to which her TB bacillus had not developed resistance. Her plight was further compounded by the lack of public transport to reach health facilities. Defeated by such difficulties and having lost all faith in the government services, the family sought the help of the local ‘vaid’ (a quack). In the next months her condition declined further and she suffered severe loss of weight.
When she finally reached the Sipajhar Primary Health Centre in May 2005 and found succour through the Revised National TB Control Programme which was by then in force, Hafeeza represented the story of countless patients in Assam who were desperate to find a cure for TB - but for whom the divide between availability of TB services and access to it, has been impossible to bridge.
Says a TB programme manager in Mangaldoi, "This [RNTCP] is one of the best programmes in the world. The government is providing Rs 20 000 worth of free drugs to each patient. We see the satisfaction of patients at the end of the treatment. If only we could get full cooperation from staff in the general health facility it would be a very successful programme", he stresses.
Herein lies the nub of the problem. While the RNTCP has created a highly motivated and trained supervisory staff, improved diagnostic facilities through designated microscopic laboratories, and ensured availability of drugs through providing a separate box for each patient in the DOTS centre, its implementation is still largely dependent on the base of a strong primary health centre. This does not exist in Assam, as in the rest of India.
The RNTCP depends on the primary health care centre outreach staff to detect new cases of TB; to ensure compliance of treatment; and to follow-up on defaulters. It depends on the primary health care centre doctor who has to clinically confirm the diagnosis and treat any side effects of the treatment.
The primary health care centre’s staff meanwhile cope with a huge work burden imposed by a number of vertical programmes like ‘Pulse Polio’ vaccination or ‘Reproductive and Child Health’, which impose their own set of incentives and targets on them. Lacking training and motivation, the health staff focus on programmes that offer greater monetary incentives, are resistant to `walking the extra mile' to detect or support patients, and are known to cook up false data.
Says an RNTCP official, "The lack of integration between the TB programme and the general health system is the main reason why the programme has not attained its goals. The PHC health staff do not support the TB programme because it does not offer cash incentives. These vertical programmes are creating distortions and there is no collaboration in the implementation of programmes".
The degenerate work culture within the primary health system is evident across Assam. But it stands out in stark contrast to the high level of motivation seen in the RNTCP staff, who have undergone undergo systematic training and regular refresher courses.
In many primary health care and sub-centres visited in Assam, the health staff fail to regularly turn up for duty. Patients who come to consume their TB medicine under the supervision of staff in the DOTS programme have to return without it, or wait for hours. The absence of drugs for other simultaneous health problems leaves patients dissatisfied with the services they have received. Many government doctors are engaged in private practice and lower-ranking staff like the pharmacist and watchmen are engaged in the racket of injecting saline injections and charging patients for it. It is these factors that drag down the success of the TB programme.
The Mangaldoi TB programme manager says, “Our cure rate here is 76% when it should be 85%. The defaulter rate should not exceed 5% but here it is 11%. The death rate should not exceed 4% but here it is around 7%. The cure rate cannot come down because of the high defaulter and death rates. Our programme is largely dealing with old cases whose erratic treatment through the earlier government programme, or factors such as frequent default rate or irrational treatment through a private practitioner, has made their cure difficult to achieve. We are failing to reach out to new cases because of this lack of convergence between the vertical programmes and the de-motivated staff in the general health system”.
The official said this situation has been repeatedly highlighted before the RNTCP officials in Delhi, “But they are avoiding the issue and telling us to try solving the problem locally”.
The failure to reach out to new TB cases is starkly evident in the neglected areas inhabited by the plains tribals - immigrant Muslim communities and the tea garden labourers of Assam. The abdication of all responsibility to provide public health services is particularly evident in the tea gardens across the state, where archaic laws still call upon private hospitals set up by feudal tea garden managements to ensure the health of its large labour population. That they have abysmally failed to discharge this responsibility is an understatement.
The Mangaldoi District TB Centre for instance, has 25 tea gardens under its jurisdiction. There are 125 000 tea garden labourers working here, with each garden employing an average 5 000 workers.
RNTCP officials in Mangaldoi say they find large numbers of tea garden workers in their area are affected by TB because of the abysmal living conditions of the workers. They name ten privately run gardens that do not allow the programme direct access to their workers. These gardens do not maintain proper health records and neither do they make an effort to identify suspected TB cases and send them for a sputum examination at the RNTCP microscopy centres.
The doctors in these garden hospitals are indifferent to supporting a national programme and consider training programmes offered to them by the RNTCP to be an “extra burden”, TB officials say. Of the eight doctors employed by the gardens’ hospitals, only three are attending their training programme. While some labourers do come out on their own for a check-up, the TB officals say the labourers are thwarted by the poor communications systems, the continual calls for ‘bandh’ (strike or closure) that paralyse all movement, their own ignorance and the stigma associated with TB.
Equally pitiable is the plight of TB patients living in the conflict zones of Assam, especially in the interior tribal villages of Bodoland. The grossest of conditions are found in the Santhal refugee camps, such as the one visited at Bengtol village, which has been in existence since 1997 following ferocious clashes between the Bodo and Santhal over the issue of land. The Bodos are the indigenous plains tribal group of Assam. The Santhals, originally from central India, were amongst the tribal groups brought by the British government to provide labour for the tea gardens of Assam.
Around 97 Santhal families have taken shelter in this camp and the past decade has seen no attempt at their rehabilitation. According to its inmates, around 77 people have died here from diseases like diarrhoea, malaria, typhoid and jaundice. “Nothing is available in the government dispensary, they tell us to buy the medicines but we had no money” says a camp inmate, Muniram Mormu. Of his five children only two are alive. He lost his other children to pneumonia, typhoid and jaundice a year ago. Doing daily wage labour in the local bazar, Mormu earns around Rs 50 a day, when work is available.
No anganwadi worker [community health worker – ‘anganwadi’ means ‘courtyard’ – Ed.] or PHC staff visit this camp, the residents say. All basic health services remain beyond their reach. Pregnant women have to pay up to Rs 700 (US$ 17) for an institutional delivery in childbirth. The only bright sparks in this camp are the children who do go to Hindi or Assamese medium schools in the vicinity and receive three kilos of government rice per month - what they should have got as cooked mid-day meal in the school - which ends up being shared with the rest of their family.
The paucity of firewood and water has made the camp vulnerable to disease and TB is common. Pegu Murmu age 70, and Danu Soren, age 60 are TB patients who are amongst the large numbers here who cannot access treatment. The RNTCP is oblivious to their existence and is a non-entity in this area.
But in her parent’s village in Muslim Ghopa, Hafeeza Begum is all smiles, for she is well on the road towards a cure. She is determined not to return to her husband, and the family and village community support her in this decision. But for how long can her TB be kept at bay? The young Senior TB Treatment Supervisor, Debajit Borooah, is concerned about Hafeeza’s future survival and believes she can find work as a community volunteer in her area, a post supported by the RNTCP. Hafeeza says she is eager to tell others who suffer from TB, that effective treatment is available. She is eager to be involved in work that satisfies her. She hopes to become a bridge that spans the divide between patients and the health services.
While India’s new policy initiative, the National Rural Health Mission envisages the creation of a trained and motivated cadre of village-based health workers who will provide a vital link with the community, the weakness of the general health care system within the primary referral services, the general lack of provision for drugs, are factors ensuring that this approach too, may be doomed to failure.
ASSAM , INDIA: When Hafeeza Begum, age 28, was brought in a rikshaw to the Sipajhar Primary Health Centre in Assam, she was in a state of collapse. Hailing from a poor Assamese Muslim family in Muslim Gopha village, around five kilometres from the health centre, Hafeeza was a case of relapsed tuberculosis. She represented the very patient that India's Revised National Tuberculosis Control Programme (RNTCP) says it is targeting to detect and cure. But Hafeeza’s struggle to access this programme is a telling story of why India’s TB programme fails to reach those who desperately seek its help.
India 's north-eastern states are amongst the most neglected in the country in terms of health services and basic development. An examination of the TB control programme in Assam provides an insight to why Indian health policy fails to make a difference in the lives of communities here or elsewhere. While millions of dollars are pumped into such stand-alone vertical health programmes, there is little hope of positive outcomes when there is no primary health care base on which they can stand.
India 's RNTCP managers claim they have a success story. A nationwide programme to detect TB patients and give them free drugs under the DOTS programme (Directly Observed Treatment - Short Course) was set in motion in 1997 at the behest of international donor agencies. In Assam it was launched April 2004. The programme envisaged a special focus on TB through the creation of a separate staff that would supervise and facilitate its implementation through the primary health care system. Improved methods of diagnosis and effective drugs promised a cure within six to nine months.
TB however, like most other illnesses, is rooted in a social context, say critics. Modern medicine considers itself impervious to the social factors that shape the health of individuals and communities. Technology and 'miracle drugs' have failed to deal with the roots of these illnesses which lie in addressing issues of poverty and social environment. Besides, treatment delivery cannot be ensured at ground level when primary health centres remain empty shells and the community has no faith in its services.
Hafeeza had studied up to class 10, and was married off in 1996. Poverty led her parents to arrange a marriage with a man who already had one wife. What he really needed was a servant who served him without wages. He was also infected by TB, and Hafeeza contracted the disease from him.
In 2003, when her chest pain and coughing became unbearable, Hafeeza's father took her for treatment at the main government hospital situated at Mangaldoi. The Sipajhar Primary Health Centre comes under the jurisdiction of Mangaldoi sub-division in Darrang district of Assam.
While the then prevailing National TB Control Programme prescribed a standardised regimen of five drugs (as does the present RNTCP), only two of these drugs were then available free from the hospital. The rest had to be purchased by the patient. Hafeeza received 45 injections over 17 days in the Mangaldoi hospital, but the cost of all the other drugs, plus the costs of transport, had already mounted to Rs 10 000 (US$ 250) and Hafeeza was forced to abandon treatment.
Feeling better initially, Hafeeza returned to the punishing regimen in her husband's home, but two months later she was back where she had started. Afraid that he would be held responsible for her deteriorating health, Hafeeza’s husband sent her back to her parent’s home.
Hafeeza was now a ‘relapsed’ case of TB and had to purchase even more expensive, second-line drugs to which her TB bacillus had not developed resistance. Her plight was further compounded by the lack of public transport to reach health facilities. Defeated by such difficulties and having lost all faith in the government services, the family sought the help of the local ‘vaid’ (a quack). In the next months her condition declined further and she suffered severe loss of weight.
When she finally reached the Sipajhar Primary Health Centre in May 2005 and found succour through the Revised National TB Control Programme which was by then in force, Hafeeza represented the story of countless patients in Assam who were desperate to find a cure for TB - but for whom the divide between availability of TB services and access to it, has been impossible to bridge.
Says a TB programme manager in Mangaldoi, "This [RNTCP] is one of the best programmes in the world. The government is providing Rs 20 000 worth of free drugs to each patient. We see the satisfaction of patients at the end of the treatment. If only we could get full cooperation from staff in the general health facility it would be a very successful programme", he stresses.
Herein lies the nub of the problem. While the RNTCP has created a highly motivated and trained supervisory staff, improved diagnostic facilities through designated microscopic laboratories, and ensured availability of drugs through providing a separate box for each patient in the DOTS centre, its implementation is still largely dependent on the base of a strong primary health centre. This does not exist in Assam, as in the rest of India.
The RNTCP depends on the primary health care centre outreach staff to detect new cases of TB; to ensure compliance of treatment; and to follow-up on defaulters. It depends on the primary health care centre doctor who has to clinically confirm the diagnosis and treat any side effects of the treatment.
The primary health care centre’s staff meanwhile cope with a huge work burden imposed by a number of vertical programmes like ‘Pulse Polio’ vaccination or ‘Reproductive and Child Health’, which impose their own set of incentives and targets on them. Lacking training and motivation, the health staff focus on programmes that offer greater monetary incentives, are resistant to `walking the extra mile' to detect or support patients, and are known to cook up false data.
Says an RNTCP official, "The lack of integration between the TB programme and the general health system is the main reason why the programme has not attained its goals. The PHC health staff do not support the TB programme because it does not offer cash incentives. These vertical programmes are creating distortions and there is no collaboration in the implementation of programmes".
The degenerate work culture within the primary health system is evident across Assam. But it stands out in stark contrast to the high level of motivation seen in the RNTCP staff, who have undergone undergo systematic training and regular refresher courses.
In many primary health care and sub-centres visited in Assam, the health staff fail to regularly turn up for duty. Patients who come to consume their TB medicine under the supervision of staff in the DOTS programme have to return without it, or wait for hours. The absence of drugs for other simultaneous health problems leaves patients dissatisfied with the services they have received. Many government doctors are engaged in private practice and lower-ranking staff like the pharmacist and watchmen are engaged in the racket of injecting saline injections and charging patients for it. It is these factors that drag down the success of the TB programme.
The Mangaldoi TB programme manager says, “Our cure rate here is 76% when it should be 85%. The defaulter rate should not exceed 5% but here it is 11%. The death rate should not exceed 4% but here it is around 7%. The cure rate cannot come down because of the high defaulter and death rates. Our programme is largely dealing with old cases whose erratic treatment through the earlier government programme, or factors such as frequent default rate or irrational treatment through a private practitioner, has made their cure difficult to achieve. We are failing to reach out to new cases because of this lack of convergence between the vertical programmes and the de-motivated staff in the general health system”.
The official said this situation has been repeatedly highlighted before the RNTCP officials in Delhi, “But they are avoiding the issue and telling us to try solving the problem locally”.
The failure to reach out to new TB cases is starkly evident in the neglected areas inhabited by the plains tribals - immigrant Muslim communities and the tea garden labourers of Assam. The abdication of all responsibility to provide public health services is particularly evident in the tea gardens across the state, where archaic laws still call upon private hospitals set up by feudal tea garden managements to ensure the health of its large labour population. That they have abysmally failed to discharge this responsibility is an understatement.
The Mangaldoi District TB Centre for instance, has 25 tea gardens under its jurisdiction. There are 125 000 tea garden labourers working here, with each garden employing an average 5 000 workers.
RNTCP officials in Mangaldoi say they find large numbers of tea garden workers in their area are affected by TB because of the abysmal living conditions of the workers. They name ten privately run gardens that do not allow the programme direct access to their workers. These gardens do not maintain proper health records and neither do they make an effort to identify suspected TB cases and send them for a sputum examination at the RNTCP microscopy centres.
The doctors in these garden hospitals are indifferent to supporting a national programme and consider training programmes offered to them by the RNTCP to be an “extra burden”, TB officials say. Of the eight doctors employed by the gardens’ hospitals, only three are attending their training programme. While some labourers do come out on their own for a check-up, the TB officals say the labourers are thwarted by the poor communications systems, the continual calls for ‘bandh’ (strike or closure) that paralyse all movement, their own ignorance and the stigma associated with TB.
Equally pitiable is the plight of TB patients living in the conflict zones of Assam, especially in the interior tribal villages of Bodoland. The grossest of conditions are found in the Santhal refugee camps, such as the one visited at Bengtol village, which has been in existence since 1997 following ferocious clashes between the Bodo and Santhal over the issue of land. The Bodos are the indigenous plains tribal group of Assam. The Santhals, originally from central India, were amongst the tribal groups brought by the British government to provide labour for the tea gardens of Assam.
Around 97 Santhal families have taken shelter in this camp and the past decade has seen no attempt at their rehabilitation. According to its inmates, around 77 people have died here from diseases like diarrhoea, malaria, typhoid and jaundice. “Nothing is available in the government dispensary, they tell us to buy the medicines but we had no money” says a camp inmate, Muniram Mormu. Of his five children only two are alive. He lost his other children to pneumonia, typhoid and jaundice a year ago. Doing daily wage labour in the local bazar, Mormu earns around Rs 50 a day, when work is available.
No anganwadi worker [community health worker – ‘anganwadi’ means ‘courtyard’ – Ed.] or PHC staff visit this camp, the residents say. All basic health services remain beyond their reach. Pregnant women have to pay up to Rs 700 (US$ 17) for an institutional delivery in childbirth. The only bright sparks in this camp are the children who do go to Hindi or Assamese medium schools in the vicinity and receive three kilos of government rice per month - what they should have got as cooked mid-day meal in the school - which ends up being shared with the rest of their family.
The paucity of firewood and water has made the camp vulnerable to disease and TB is common. Pegu Murmu age 70, and Danu Soren, age 60 are TB patients who are amongst the large numbers here who cannot access treatment. The RNTCP is oblivious to their existence and is a non-entity in this area.
But in her parent’s village in Muslim Ghopa, Hafeeza Begum is all smiles, for she is well on the road towards a cure. She is determined not to return to her husband, and the family and village community support her in this decision. But for how long can her TB be kept at bay? The young Senior TB Treatment Supervisor, Debajit Borooah, is concerned about Hafeeza’s future survival and believes she can find work as a community volunteer in her area, a post supported by the RNTCP. Hafeeza says she is eager to tell others who suffer from TB, that effective treatment is available. She is eager to be involved in work that satisfies her. She hopes to become a bridge that spans the divide between patients and the health services.
While India’s new policy initiative, the National Rural Health Mission envisages the creation of a trained and motivated cadre of village-based health workers who will provide a vital link with the community, the weakness of the general health care system within the primary referral services, the general lack of provision for drugs, are factors ensuring that this approach too, may be doomed to failure.
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