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Why We Must Fight Social Stigma To Triumph Over India's TB Crisis

11/09/2015 8:13 AM IST | Updated 15/07/2016 8:25 AM IST
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DELHI, INDIA - JUNE 7: Maniha, 9, a tuberculosis (TB) patient for four months, looks on at her home as a counselor, center, from operation ASHA ('hope' in Hindi) visited her to give her medication as she is to weak to walk to a treatment center, tries to talk with her on June 7, 2011, in New Delhi, India. NGOs such as ASHA set up TB treatment centers in the heart of low income communities and slums attempting to treat TB at the source so patients get their medications close to their homes, decreasing the default rates. Lower default rates decrease the risk of multi drug resistant MDR TB, which develops during treatment of fully sensitive TB when the course of antibiotics is interrupted and the levels of drug in the body are insufficient to kill 100% of bacteria. To prevent this, ASHA counselors implement the Directly Observed Treatment, Short-course (DOTS) program, where the drug providers watch the patient receive each dose of their medication. Inadequate access to safe water, sanitation, poor quality housing with bad ventilation, and overcrowding all contribute to the spreading of TB in urban areas. TB is one of the leading causes of mortality in India, killing 2 people every three minutes, nearly 1,000 every day. India currently has 3.5 million people affected by the disease. ASHA hopes to treat 25,000 patients annually by 2013 with support from the World Health Organization. (Photo by Andrew Caballero-Reynolds/Getty Images)

Tuberculosis (TB) is second only to HIV/AIDS as the greatest killer worldwide due to a single infectious agent. India has the highest burden of TB in the world with an estimated 2 million new cases every year. In 2012, there were 850 deaths every day from TB in India and the number remains disconcertingly high.

TB is fully curable especially if it is diagnosed on time and therefore the fact that it still claims so many lives in India is an extremely unfortunate reality that needs to be collectively addressed by all stakeholders -- the government, private sector, civil society and citizens. This is especially important because TB is not just a health issue. Since it primarily affects those who are in their productive years, between the ages of 15 and 54, there are significant socio-economic implications.

"Women are disproportionately affected as they worry about failed marriage proposals as well as being asked to leave their homes by their husbands or in-laws."

One of the major reasons for India's high TB burden is stigma. A study that evaluated TB related stigma in Bangladesh, India, Malawi and Colombia found that India has the highest overall stigma index. TB-associated stigma causes patients to often deny their condition. They also fail to seek treatment because they fear losing social standing. Failure to receive the appropriate treatment on time is one of the contributing causes for the spread of TB as well as the emergence of drug-resistant forms of TB which take considerably more time and resources to treat. Women are disproportionately affected as they worry about failed marriage proposals as well as being asked to leave their homes by their husbands or in-laws. It is estimated that 100,000 women in India are asked to leave their homes once they are diagnosed with TB.

Over the last few years there have been attempts by different stakeholders to address the problem of TB-related stigma in India. In 2014, Amitabh Bachchan publicly acknowledged that he had been treated for TB in 2000 and agreed to be an ambassador for the Mumbai Municipal Corporation's anti-TB efforts.

NGOs have also adopted a range of strategies for minimising stigma. For instance, Operation ASHA, which provides last-mile delivery of Government TB medicines in slums and other disadvantaged communities, uses "camouflage" as a strategy. Instead of labelling their treatment centres as "TB Centres", they refer to them as Medical Centres where local residents can also come to obtain over-the-counter medications like antacids and pain relievers. This ensures that patients who go to their centres for treatment do not feel embarrassed because of social stigma. Operation ASHA also hires field staff who are from local communities themselves and can therefore appreciate the socio-cultural context. Patients also trust them and are far more willing to discuss their symptoms with them as opposed to field staff who are brought in from elsewhere. Operation ASHA's field staff have counselled families to not abandon members who are diagnosed with TB. They have also taken up the cause of patients with school authorities so that no child is discriminated against or asked to leave school because he or she is diagnosed with TB.

Stigma, of course, is not associated with only the socio-economically weaker classes. It affects all segments of society. For instance, it was reported that the husband of a successful executive in a multinational firm filed for divorce after he discovered that his wife had TB.

Thus, while mass media campaigns with celebrities will help to some extent with addressing TB-associated stigma, customised campaigns that cater to the widely varying socio-economic contexts in India are also essential. For instance, community radios can be utilised to good effect to dispel the myths surrounding TB. Even more impactful will be open, frequent and informed discussions about TB amongst all stakeholders. After all, it is not a health problem alone but a broader societal challenge. It is only if it is perceived in this manner that we can eradicate this disease.

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