The negative impact of stigma is felt worse by women, who already face challenges with autonomy and financial independence, says SHALINI SAKSENA  

Tuberculosis is a major public health challenge. In India, the disease affects more than 1.8 million people annually. The country has the highest global TB burden, with more than 2.8 million cases of active TB and around 435,000 deaths every year. This, despite more than a million cases going unreported/undiagnosed. The challenge only worsened with the COVID-19 pandemic and consequent lockdowns.

The challenge continues due to several factors, including economic or gender inequalities, overcrowding, inadequate ventilation and lack of awareness, amongst others. While there are free TB testing and treatment options available at Government hospitals, Community Health Centers (CHC), Primary Health Centers (PHCs), people lack access to them due to lack of transportation or support. 

Stigma is a major barrier to accessing TB care and leads to suffering. Even though the disease is entirely curable and preventable, there is neglect, delay in diagnosis and incomplete treatment adherence. This delay in diagnosis prevents access to life-saving drugs and improper treatment leads to many developing multi-drug resistance, another condition highly prevalent in India.

The condition is more likely to affect men. Data from 2020 shows that out of a total 19,07,760 cases – 11,13,462 were men, and 6,91,238 were women.

 However, the negative impact of stigma is felt worse by women, who already face challenges with autonomy and financial independence. The stigma and injustice faced by women with TB are a harsh reminder of how entangled these issues are with the role of women in Indian society, and the gender-based inequities that continue to be nurtured by age-old cultural norms, economic disparities, and lack of adequate social protection.

Young girls too get negatively affected by TB, and because of the stigma attached to the disease, are forced not to share their status and seek treatment which might affect their schooling and even future career opportunities. In the case of eighteen-year-old Mahima (name changed), a TB survivor, and a champion posed a much bigger question of the right to live with dignity to those present and the society at large. Mahima raised a critical question on why should TB patients not be allowed to live with dignity and face such intense stigma?

Those diagnosed with the disease face difficulties in marriage prospects, education, employment opportunities, hurtful behavior by the society, accessing nutrition and social isolation. They are subjected to extreme persecution, where they receive little to no support, and are forced to eat or sleep separately from others.  More than 15 per cent of women with TB in rural and urban areas face rejection from their families, friends and society. Spousal support, crucial in the treatment of any health condition, remains a challenge for many women with TB. Evidence from the Foundation of Research in Community Health, Pune found that men had a more definite anticipation of spousal support, however, it was conditional for women, worsening their vulnerability to tackle the disease.

Recently, the National Framework for a Gender-Responsive Approach to TB-Care was released by the Indian government. It pushes for the need to mobilize, empower and engage women, men and transgender persons in the TB response at the health system and community levels to accelerate efforts to end TB in India. It is critical that the framework guides future action on TB care and is implemented in all sections of the society.

To achieve the goal of elimination, it is vital to incorporate campaigns to spread awareness about the disease, its prevention, and treatment, as well as to address the stigma associated with it. Karnataka Health Promotion Trust (KHPT) recognising the dual burden of gender and stigma for women affected by TB, works on building a gender approach to equitable healthcare for all.

This can be made possible with the inclusion of people affected by the disease and their families or friends to share their experiences about challenges and successes as it will help to counter misinformation, decrease the stigma and motivate others to seek treatment.