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The reality of TB in India

9 July 2009, 17:07

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by Rupa Chinai, Mumbai, India

When Hafeeza Begum, age 28, was brought in a rickshaw 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 (US$ 500) 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.

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