By Sophia Corrodi from Polygeia

While leprosy is clearly a global issue that is particularly prevalent in developing Eastern countries, India shoulders over 60% of that global burden. This implies that underlying factors beyond pure biology that may predispose the country to such a high proportion of cases. Furthermore, particularly in rural India, there is a discrepancy in when those cases are being diagnosed. For example, there is a significant deficit in girls aged 11-19 seeking medical treatment for leprosy, which indicates a gender bias that affects transmission factors. Indian culture, in particular, places itself as an area where this bias is exacerbated, due to cultural beliefs that are still dominant in its population.

In rural India, nearly 74% of marriages are arranged. This perpetuates the patriarchal and caste-based system placing males at the centre of wedding practices. Arranged marriage is still common and often leprosy makes a potential female spouse far less desirable. Therefore, fewer women of marriage age are reporting cases and seeking treatment so as to not seem ‘contaminated’ by the disease, which in turn often worsens the severity of the cases and ultimately prevents healthcare access altogether. This prevails throughout India today, although the advent of arranged marriage dating websites and the widespread use of the internet has been shown to slowly modernise this.

The cultural stigmatisation of women with leprosy and the disease itself is reinforced by legal implications imposed by the Indian state. The police, working under the Indian state, currently have huge powers of arrest and confinement, which includes arresting women for the noncriminal offence of ‘immorality’. Asylums to which infected family members are often committed are notoriously run with prison-like conditions, further propagating the idea throughout part of the Indian culture that leprosy is similar to a crime, and thereby deserving of a lowered standard of living.

These modern laws are eerily similar to earlier draconian acts, such as the ‘Leper Act of 1889’, which required forced confinement of people with leprosy, and demanded that anyone with the condition be placed in an asylum or colony. Though post-British colonial influences are fading, institutionalisation and exclusion linked leprosy with poverty and criminality, laying a poor foundation for later change in mentality.

While many of these cultural and legal views stem from generations ago, it can be notoriously difficult to change longstanding traditions and views of populations with largely limited access to education that acknowledges equality and the current prevailing stigma of the infection. Data shows that younger women hide disease to maximise spousal chances. Identifying leprosy in girls of wedding age targets the women as victims of a ‘dirty’, ‘contagious’ disease and unworthy of a suitable husband, explaining the decline in registered cases of leprosy in this age group. This delay is a dangerous practice, as it leads to these women suffering untreated from the disease for potentially up to eight years.

In addition, though arranged marriages are a distinctly social aspect of the culture in India, their implications perpetuate much further into the health of the women. The role of women as “lesser individuals” means that “most women delayed going to hospital, until their husband/guardian felt it was necessary”. Given the time it takes to diagnose leprosy is a significant factor in the severity of the disease, the nature of the role of women in relation to their husbands or guardians directly leads to a greater impact of leprosy and constitutes a major risk factor for women’s health.

While changing pre-existing mentalities and cultural perceptions is difficult, it is essential when tackling neglected diseases such as leprosy. Therefore, health education and gaining a stronger understanding of how leprosy is transmitted is crucial to reducing stigma from others.

Increased internet and technology access has been shown to change perceptions towards arranged marriage and otherwise gender-specific cultural practices in India, particularly with the advent of online dating. This provides a potential tool for modernisation that can potentially have a huge impact on future generations’ relationship interactions, and therefore on leprotic practices.

Find out about our work to help women affected by leprosy