Volunteers bring TB support to communities
by Benoit Carpentier, IFRC
Sukhwinder* was 28 when she died. She was the mother of four children. Her youngest child had just turned one when Sukhwinder died of tuberculosis (TB) in the village of Lahori-Mal, Punjab. She is one of the thousands of people in India who died because of stigmatization.
People with TB often suffer from discrimination, stigma, rejection and social isolation. TB also creates a vicious cycle - the disease exacerbates poverty, which increases the likelihood of contracting TB. Patients with TB are often too sick to work, but they may still have to support their families and pay for treatment.
The story of Sukhwinder is not unique. She was 17 when she was forced to marry a man she had never met. She contracted TB from her husband, who had problems with alcohol and drugs. She underwent treatment, but did not complete the course due to a bad reaction to the medicine, and the disease returned in 2011.
“Tuberculosis is curable,” says the state coordinator for tuberculosis Mr R.P. Verma. “But the only way is to make sure that people complete their treatment, which takes eight months for re-treatment patients, but two years if the disease becomes resistant to normal medication. The key role of the Indian Red Cross Society is to prevent drug resistance TB, and combat stigma and discrimination associated with the disease.”
Poor patient adherence to medication is one of the major hindrances to effective TB control. In response, the World Health Organisation (WHO) promotes a strategy known as ‘Directly Observed Treatment, Short-course’, or DOTS. This focuses on diagnosis, a standard drug regime, individual monitoring and a secure supply of drugs. While this improves cure rates, it is labour intensive. Health staff who are already overworked often find it daunting to have to administer DOTS to large number of patients.
Charan is one of the many volunteers supporting the TB programme. Sukhwinder was one of his patients. He recalls visiting her after she had been diagnosed as a re-treatment patient, “I visited Sukhwinder at her in-laws’ home to make sure she was taking her medicine correctly. When her in-laws discovered that she had TB, they rejected her. She became useless to them.”
Charan’s visits made sure that she continued with the treatment. However her health was deteriorating. Rejected and alone, Sukhwinder had neither food nor adequate access to health services.
Sukhwinder managed to complete her treatment due to the dedication and perseverance of Red Cross volunteers like Charan and, after four months, was pronouced cured. However, her immune system had suffered considerably. “She died suddenly, while she was talking,” says Sukhwinder’s father.
Sukhwinder’s death does not mark the end of Charan’s work with this family. He checks in on Sukhwinder’s in-laws each week to see how they are, as well as on her four children who now live with their father and grandparents. He goes to talk about their health and share a message of humanity.
Volunteers like Charan provide a unique bridge between vulnerable people and the formal health system. Whether delivering care, immunizations, or promoting health services, volunteers make an vital contribution in ensuring equitable access to care. From an initial pilot programme in six districts across three states in India, the Red Cross, together with the Ministry of Health and Family Welfare, has expanded this programme to 14 districts in seven states reaching out to over 1,000 patients, with an average adherence to treatment of over 90 per cent.
*Name has been changed to protect privacy of the patient and her family