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By Rupa Chinai Hafeeza Begum of Sipajhar is one of thousands of patients in Assam who are desperate to find a cure for tuberculosis but for whom the divide between availability of services and access to them is impossible to bridge
 When Hafeeza Begum, aged 28, was brought in a rickshaw to the Sipajhar primary health centre in Assam she was near collapse. Hafeeza is from a poor Assamese Muslim family in Muslim Gopha village, around 5 km from the health centre. She had suffered a relapse of her tuberculosis.
Hafeeza represents the countless patients that India’s Revised National Tuberculosis Control Programme (RNTCP) says it is targeting. But her struggle to access the programme speaks volumes for why India’s TB programme has failed to reach those who desperately seek its help. The northeastern states of India are among the most neglected in the country in terms of health services and basic development. An examination of the TB control programme in Assam offers an insight into why India’s health policy fails to make a difference to the lives of communities here and elsewhere. India’s RNTCP managers claim they have a success story. A nationwide programme to detect tuberculosis patients and give them free drugs, under DOTS (Directly Observed Treatment-Short Course), was set in motion in 1997 at the behest of international donor agencies. In Assam, the programme was launched in April 2004. The RNTCP envisaged a special focus on tuberculosis through the creation of special staff that would supervise and facilitate its implementation through the primary healthcare system. Improved methods of diagnosis and effective drugs promised a cure within six to nine months. But, critics say, like most other illnesses, tuberculosis is rooted in a social context. Modern medicine often sees itself as separate from the social factors that shape the health of individuals and communities. Technology and ‘miracle drugs’ fail to deal with the roots of these illnesses that lie in addressing issues such as improved nutrition, lifestyle and social environment. Besides, delivery of treatment cannot be ensured at the ground level when primary health centres remain empty shells and the community has little faith in their services. Although crores of rupees have been pumped into stand-alone vertical health programmes like this, there’s little hope of a positive outcome when there’s no primary healthcare base on which they can stand. Hafeeza had studied up to Class 10. Her poverty-stricken parents then married her off in 1996 to a man who already had a wife. What he really needed was a servant who would serve him without being paid. He also had tuberculosis, and Hafeeza, made vulnerable by her weak immune system brought on by poor diet and hard work, contracted the disease from him. In 2003, when her chest pain and coughing became unbearable, Hafeeza’s father took her for treatment to the main government hospital in Mangaldoi. The Sipajhar primary health centre falls under the jurisdiction of Mangaldoi sub-division in Assam’s Darrang district. While the then-prevailing National TB Control Programme prescribed a standard regimen of five drugs (as does the RNTCP), only two of these drugs were available free of cost at the hospital. Patients had to buy the others themselves. Hafeeza received 45 injections, over 17 days, at the Mangaldoi hospital, but mounting drug and transport costs (around Rs 10,000) forced her to abandon treatment. Feeling a little better, Hafeeza returned to the punishing regimen in her husband’s home. Two months later she was back where she started. Afraid that he would be held responsible for her deteriorating health, Hafeeza’s husband sent her back to her parents’ house. Hafeeza’s relapse turned out to be even more expensive than her initial treatment. They had to buy second-line drugs to which she had not developed a resistance. Her woes were compounded by the lack of public transportation to get to the hospital. Swamped by all these problems and having lost faith in the government services, Hafeeza’s family sought the help of a local vaid (quack). Her condition deteriorated and she lost a lot of weight. When Hafeeza finally reached the Sipajhar primary health centre in May 2005, and got help under the Revised National TB Control Programme, which, by then, was in force, she underlined the case for thousands of patients in Assam who are desperate to find a cure for tuberculosis but for whom the divide between availability of services and access to them is impossible to bridge. A TB programme manager in Mangaldoi says: “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 treatment. If we could only get the full cooperation of staff in the general health facility, it would be a very successful programme.” Herein lies the nub of the problem. While the RNTCP has created a highly motivated and trained supervisory staff, improved diagnostic facilities through designated microscopy laboratories, and has ensured the availability of drugs through a separate box for each patient at the DOTS centre, its implementation is still largely dependent on a strong primary healthcare system, which does not exist in Assam, as in many parts of India. The RNTCP depends on outreach staff to detect new cases of the disease, ensure compliance of treatment, and follow up on defaulters. It depends on the primary health centre doctor who has to clinically confirm the diagnosis and treat any side-effects of the treatment. Staff at the centre cope with a huge work burden imposed by a number of vertical programmes like pulse polio vaccinations and reproductive and child health (RCH) programmes, which have their own set of incentives and targets. Lacking training and motivation, health workers focus on programmes that offer greater monetary incentives and do not force them to ‘walk the extra mile’ to detect and support patients. They are also known to cook up false data. One RNTCP official says: “The lack of integration between the TB programme and the general healthcare 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.” This degenerate work culture within the primary healthcare system is evident all across Assam, in sharp contrast to the high level of motivation seen among RNTCP staff who have undergone systematic training and regular refresher courses. At many primary health centres and sub-centres in Assam, health staff fail to turn up for duty every day. Patients who come for their tuberculosis medicine, under supervision in the DOTS programme, have no option but to return without it or wait for long hours. There are also no drugs for other simultaneous health problems. Many government doctors engage in private practice, and lower-ranked staff like pharmacists and watchmen are often involved in dubious rackets like charging patients for saline injections, etc. It is these factors that drag down the success of India’s tuberculosis 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%; here it is 11%. The death rate should not exceed 4%; here it is around 7%. The cure rate cannot come down because of the high defaulter and death rates. Our programme largely deals with old cases where erratic treatment under the earlier government programme, or factors such as frequent default rates or irrational treatment through a private practitioner have made a cure difficult to achieve. We are failing to reach out to new cases because of lack of convergence between vertical programmes and de-motivated staff within the general healthcare system.” The official explains that the situation has been repeatedly highlighted before RNTCP officials in Delhi. “But,” he says, “they are avoiding the issue and tell us to try solving the problem locally.” The failure to reach out to new tuberculosis cases is starkly evident in neglected areas inhabited by the plains tribals, immigrant Muslim communities and Assam’s tea garden workers. The abdication of all responsibility of providing public health services is particularly evident in 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 the 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 1.25 lakh tea garden labourers working here; each garden employs an average of 5,000 workers. RNTCP officials in Mangaldoi claim that large numbers of tea garden workers in the area have contracted tuberculosis because of the abysmal living conditions. They name 10 privately run gardens that do not allow the programme direct access to their workers. These gardens do not maintain proper health records, neither do they make an effort to identify suspected tuberculosis cases and send them for a sputum examination at the RNTCP microscopy centres. The doctors at the 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 at the gardens hospitals, only three are attending the training programme. Although some workers do come in for a check-up voluntarily, they are thwarted by poor communications systems, constant calls for a bandh (strike or closure) that paralyse all movement, their own ignorance, and the stigma attached to tuberculosis, the officials say. The plight of tuberculosis patients living in Assam’s conflict zones, especially the interior tribal villages of Bodoland, is perhaps even worse. Conditions at Santhal refugee camps, such as the one at Bengtol village that has been there since 1997 following ferocious clashes between Bodos and Santhals over land, are unimaginable. The Bodos are an indigenous plains tribal group in Assam, while the Santhals, originally from central India, were among 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 there has been no effort to rehabilitate them for over 10 years. According to the camp’s inmates, around 77 people have died here of diseases ranging from diarrhoea, malaria, typhoid and jaundice. “Nothing is available at the government dispensary. They tell us to buy the medicines ourselves, but we have no money,” says Muniram Mormu. Of his five children, only two are still alive. He lost the others to pneumonia, typhoid and jaundice a year ago. Doing daily wage labour at the local bazaar, Mormu earns around Rs 50 a day, when work is available. No anganwadi worker or PHC staff member ever visits this camp, the residents say. Basic health services remain beyond their reach. Pregnant women have to pay up to Rs 700 for an institutional delivery. The only bright sparks at this camp are the children who study at Hindi or Assamese-medium schools in the vicinity and receive three kilos of rice per month -- as part of the government’s mid-day meals scheme -- which ends up being shared with the rest of the family. Paucity of firewood and water has made people in the camp vulnerable to disease, and tuberculosis is common. Pegu Murmu, aged 70, and Danu Soren, aged 60, are amongst the large numbers of tuberculosis patients here who cannot access treatment. The RNTCP is unaware of their existence and is a non-entity in the area. At her parents’ village in Muslim Ghopa, Hafeeza Begum is all smiles today. She is well on the road to recovery and is determined not to go back to her husband. The village community supports her in this decision. But young senior TB treatment supervisor Debajit Borooah is concerned about Hafeeza’s future. He says she can find work as a community volunteer in the area, a post supported by the RNTCP. Hafeeza says she is eager to tell other tuberculosis sufferers that they can get effective treatment. She hopes to become a bridge that spans the divide between patients and the health services. (Rupa Chinai is an independent writer who specialises in public health reportage) InfoChange News & Features, December 2006
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