Stigma-a stumbling block in eliminating TB and HIV

Dr Sophia Thomas, CNS Correspondent, India
Tara (name changed) was ill. She was the youngest daughter of my house help. It is not very often that we saw her worried and this made me ask her what was wrong. And wrong it was, as Tara had been diagnosed with TB. The mere name of the disease caused her mother endless worries. Her main cause of concern was that her daughter would soon attain a marriageable age and, given her condition, it would be difficult to find a groom for her.

So much more than the health consequences of the disease, it was the social stigma attached to TB that haunted the hapless mother. Tara, the youngest of four children had not been keeping good health for the past few weeks. She was studying in grade 10, in a government school. Persistent fever and cough were making it impossible for her to concentrate in her studies and participate in games with her friends. Tara’s mother rarely took her children to the doctor upon falling ill, mainly due to financial constraints at home. Her mother was the sole breadwinner of her family as Tara’s father had passed away two years ago due to oral cancer.. Tara’s mother took her to government as well as private hospitals, in anticipation of a faster cure with fewer medicines.

Tara is 19 years now and is married. She managed to pass grade 10, but due to persistent ill health, she could not study any further. As she did not comply with her TB treatment, she is still grappling with the disease. Side effects from the medicines, seeking different healthcare providers, lack of information about the illness, inability to buy nutritious food, deteriorating financial conditions at home, fear of stigma from the society and constant burdens of urban poverty, had crushed her hopes of coming out of this deadly disease.

Tara’s case is not an isolated one. There are many young people like her, who have lost (and continue losing) their precious years to this dreadful disease. Stigma is often a barrier to accessing and/or completing treatment for TB & HIV patients. Evidence suggests that in regions where HIV and TB co-infection is common, the link between the two diseases gives rise to the stigmatization of TB. TB is thus perceived as a marker for HIV, hence HIV-associated stigma is transferred to TB-infected individuals. Poor social determinants of health play an important role in perpetuating stigma such as: perceived association of TB with malnutrition, poverty and low social class. In some cases, judgemental community beliefs perpetuate that TB is a divine punishment for a moral or personal failing, and this in turn licenses stigmatisation. Hence this ‘double stigma’ not only acts as a barrier in accessing healthcare, but also adversely affects treatment outcomes of persons with TB and HIV. Therefore, dealing with stigma is important in the Indian context, because India accounts for one fourth of the global TB burden and has the third largest HIV epidemic in the world. The World Global Tuberculosis report 2017 lists India in the high-burden country lists for TB, TB/HIV co-infection and MDR-TB. In 2015, the estimated number of incident TB cases among people living with HIV (PLHIV) in India was found to be 110,000.

At the global stage, sustainable development goals have set an ambitious target to end the epidemics of AIDS and TB by 2030. Working towards this, the Indian National Health Policy 2017, aims to achieve the global target of 90:90:90 for HIV/AIDS by 2020; achieve & maintain a cure rate of more than 85% in new sputum positive TB patients; and reduce incidence of new cases to reach elimination status by 2025. (Source: World Global TB report, 2017)

These statistics elicit a symbiotic relationship between the bacteria and virus, as if they were working together to resist elimination. In line with this theme, CNS had hosted a webinar on World AIDS Day 2017, on ‘When HIV virus and TB bacteria can work together, why can't we?’. Dr Ishwar Gilada, President of AIDS Society of India (ASI) explaining the pathological mechanism through which both these diseases interact, also elicited other points to improve health and well being among TB patients and PLHIV. Dr Gilada stressed on closing the existing gaps in TB research, duplication of work in vertical programmes and called for integrated efforts to fight both TB and HIV.

Women and stigma

Apart from the immunological connection of TB-HIV, affecting the treatment outcomes, there is also a social/community angle. The global TB and HIV epidemics are worsened by stigmatisation. This is further inflamed by their association with poverty, social marginalization, risk of transmission & death, and possibly perpetuated by subversive policies and practices. TB stigma has a more significant impact on women and poor or less-educated community members, even as these groups find it difficult to access healthcare. TB stigma therefore worsens pre-existing gender- and class-based health disparities. In India, stigmatization is far worse in women, given the social construct of gender. In rural communities there is little understanding of the mechanisms and risks of virus transmission, and minimal education about disease management.

Information is instead drawn from rumour, cultural institutions and media. Therefore lack of accurate biomedical knowledge, combined with widely held social perceptions of HIV (and its co-morbidities) as an immoral, deadly, highly-contagious women’s disease, generates fear and focuses shame on women, be they sex-workers or wives. This shows the added layer of suppression and concentration of stigma in populations governed by gendered and patriarchal societies. This calls for a concerted efforts at global & national level to effectively address and fight stigma associated with TB and HIV. Failing to do so might prevent us from realising the SDG target of eliminating both these diseases.

Dr Sophia Thomas, Citizen News Service - CNS
January 8, 2018