Tuberculosis Treatment and Prevention

Thursday, July 21, 2005

Unsung Heroes: Minds without fear and discrimination

by HDN Key Correspondent Team
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Primary care-givers in India may be living on the edge themselves, but still find the resources to help those with TB. We look at a few personal stories

More adults in India die from Tuberculosis (TB) than from any other infectious disease.

Although the number of men who are diagnosed with and die from TB is higher than that of women, it is still a leading cause of death amongst females. It kills more women of reproductive age than all causes of maternal mortality combined. As tuberculosis affects women mainly in their economically and reproductively active years, the impact of the disease is felt strongly also by their children and families.

Indian women who suffer from TB face special constraints. They tend to neglect their illness due to household responsibilities until they become too sick to attend to their normal duties. They are often dependent on others to get necessary medical attention. (Source RNTCP document). Here we highlight some of the "Hidden Heroes" of rural healthcare, both men and women, who work to improve their community's access to treatment.

Peer educators at Bangalpur Women's Credit Cooperative, Howrah
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Bangalpur Women's Credit Cooperative has mobilised and organised around 8,000 women around savings and income generation activities. The cooperative is committed to providing accurate information on TB as well as DOTS, a method of peer-observed treatment that helps ensure adherence to regular drug regimens.

The cooperative achieves this aim using peer education, and has now created forty trained educators with the support of CARE India (West Bengal), an international NGO.
Focusing on community mobilisation, the credit cooperative has paid special attention to removing the many myths and misconceptions related to TB and its treatment. And there is practical help too; all forty-peer educators are also working as community based DOTS providers to help TB patients. As a result of patient confidentiality assured by the team, more and more women are coming forward for the treatment, and in the last 11 months the team has helped 90 women become free from the disease.

Lilima Begum, wife of a migrant jute mill worker
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Lili, as she is affectionately known, is a 35-year-old woman who lives with her children and in-laws in a small, ramshackle house in the interior of Howrah district, West Bengal. Hers is a migrant family from Bihar, and her husband is a jute worker, presently jobless from the sudden closure of his mill. This has left Lili as the sole breadwinner, earning a meagre 100 rupees (US $2.2) per month as a "community volunteer" for Jhumjhumi TB Unit.

Despite these hardships Lili is an inspiration in her dedication to her community. Spirited and dynamic, she has an ability to be both inspiring and convincing. She has become well respected in the seven villages, including her own, in which she works, catering to a population of over 15,000.

In her first year, Lili worked as DOT provider for 11 TB patients, and all of them have since successfully completed their treatment. Her competence with the technical facets of DOTS is notable, but her success also rests on her sincerity and meticulous effort.

Women like Lili live behind the shadows of poverty, their service to the community seldom recognised by state healthcare providers. But the blessings and thanks of the sick and dying remain unfettered.

In the face of severe economic hardship, some might say this is not compensation enough. Yet given the socio-cultural realities in Indian communities, Lili represents a real effort to reach out to rural women suffering from TB.

Ekramul Haque, a "bare-foot doctor" in Malda
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From dawn to dusk, Ekramul Haque tries to convince clients with three weeks or more of persistent cough to report to their nearest state microscopy centre for sputum test. He also motivates imams to follow up on those who are put on DOTS regimes.

Ekramul has been helping people with TB since the beginning of 2003, following training provided by CARE. He has become very popular in 13 villages, where he is known as the "TB Doctor". Since starting his work, Ekramul has provided care to 81 TB patients, 59 of whom have now been cured. The remainder continue to benefit from his support with DOTS, with a hope that they, too, will soon be free of the disease thanks to the TB Doctor.

Becharam Malik and Kumkum, Howrah
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Twenty-nine-year-old Becharam Malik, a carpenter in Howrah, helps people with myths and misconceptions relating to TB, and provides a similar service to Ekramul.

Right now he is referring those with chest symptoms to their nearest microscopy centre, acting as a community DOTS provider and declaring those who have been successfully treated as cured. So far Becharam has helped 24 TB patients successfully complete their treatment.
Kumkum, a 19-year-old housewife
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Wife of a migratory jewellery worker, Kumkum dedicated herself to TB healthcare with conviction. Her own experience of the disease is a motivation, since she and her one-year-old daughter were discriminated by the community because of her husband's TB.

Kumkum has turned this experience on its head, and now disseminates scientific knowledge regarding TB and its treatment using the example of her now-cured husband. She has become well accepted thanks to her dedication to breaking the cultural silence about TB. And thanks to her efforts 15 TB patients have been successfully treated through DOTS.

Thanks to the work of Kumkum and people like her, basic healthcare services like DOTS are being provided to the doorsteps of people who would otherwise be unreachable. Only in this way will the tide of TB be turned in areas where committed "Unsung Heroes" are the only available resource to fight the disease.

HDN Key Correspondent Team
Email: correspondents@hdnet.org

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