Latest research shows women affected by leprosy receive a later diagnosis than men, causing disability and stigma

New research by The Leprosy Mission England and Wales highlights the reasons why women are less likely to be treated promptly for leprosy and are more likely to become disabled and cast out from society than men.

The latest WHO global report* clearly shows that there are fewer women reported as new cases of leprosy than men. Out of a total of 210,758 new cases diagnosed in 2015, only 81,860 - under 40% - were women. However, no medical evidence suggests that leprosy is more likely to be caught by men than women.   

Our soon-to-be-published research concludes that a major cause of the late diagnosis of leprosy in women is the fear of stigma and being ostracized from family and community. The stigma that surrounds leprosy can have such a devastating impact on a life, that going forwards for a diagnosis might feel risky. Stories like Belawati’s, from Uttar Pradesh in India, are all too common.

Belawati was married young and soon had two children. After a few years of marriage, she developed white patches on her body. Unaware of what they were, she decided to ignore them. Over the next few years the patches grew in size and number. Next, Belawati’s hand started to claw and she became unable to use it. Family members started to avoid contact with her and her husband also kept his distance. Belawati was desperate about her situation, but did not know what to do or who to turn to.

One day, Belawati’s husband took her to Agra Hospital - telling her he was taking her to be treated - and left her there. When she realised that she had been abandoned, she was broken-hearted. One of the staff there suggested that she move to the local leprosy community.

After her treatment was finished, she returned home where she discovered that her children had been told that she had taken her own life. Hearing this news, Belawati lost all her hope of being accepted by her husband again and she went to live at the leprosy community on her own.

Thankfully, Belawati has been able to make a new start at the leprosy community and has even remarried. Her new husband is also affected by leprosy.

The Leprosy Mission’s CREATE project started working in Ramganga leprosy colony, where Belawati lives, in 2016, Belawati joined the support group there and is now a confident woman who is an active member of the group.

She now says she "wants to make a difference in society regarding women and people affected by leprosy.” 

Leprosy is a disease of poverty and within the 11 countries that The Leprosy Mission England and Wales works, across Asia and Africa, women are generally more disadvantaged than men in terms of access to food, healthcare, education and work opportunities.  

They frequently have less exposure to communication and information making accessing effective treatment for leprosy extremely difficult.  Often, they are dependent on obtaining permission from their father or husband to seek treatment. Marriage is for many women in leprosy-endemic countries the only real economic security, but this often means they do not have the skills or opportunities to cope when rejected by their families and left destitute due to leprosy. 

Sian Arulanantham, Head of Programmes at The Leprosy Mission England and Wales, said: “Leprosy is a mildly-infectious and perfectly treatable disease. It is an absolute tragedy that so many women like Belawati suffer such unnecessary rejection and hardship.

"If services fail to address the increased burden of stigma which women face due to a diagnosis of leprosy, we may never know how many women continue to suffer in silence. We must ensure that men and women receive leprosy services equally to improve the detection rate for women.”   

The Leprosy Mission uses community awareness programmes, including those targeted specifically at women and children, to ensure that women and girls learn about the early signs and symptoms of leprosy, their right to health and the urgent need to access treatment to prevent disability.  

In addition, hospital outreach programmes visit remote communities to screen people for leprosy, paying particular emphasis on engaging with women’s groups and schools so women and girls can access early diagnosis and treatment.

Through examining the household contacts of a person diagnosed with the disease, we can ensure that women and girls who are less likely to come forward for treatment don’t miss out on early diagnosis and the other health services they require.

*World Health Organization Weekly Epidemiological record

Photo: Ruth Towell/The Leprosy Mission