New Report Warns of the Triple Jeopardy Facing Women and Girls with Leprosy

Women and girls with leprosy are discriminated against on grounds of gender, disability and leprosy stigma.

American Leprosy Missions, the nation’s leading anti-leprosy organization, announces the release of a new report by ILEP, the International Federation of Anti-Leprosy Associations, of which it is a member. The new report – Triple Jeopardy: tackling the discrimination facing women and girls with leprosy – reveals a gender-based discrepancy in the figures for new cases of leprosy and identifies that women affected by leprosy can take twice as long as men to be diagnosed properly, leaving them at far greater risk of developing a life-long disability.  They are discriminated against because of their gender, their disability and the stigma surrounding leprosy.

Already disadvantaged by limited access to food, healthcare, education and work opportunities, the impact of leprosy is greater for girls and women, and less exposure to communication and information makes accessing effective treatment for leprosy impossible for some.  Marriage is for many women the only real economic security, but it makes a woman dependent and a woman with leprosy can be rejected by her family, divorced by her husband and left destitute and homeless.  ILEP’s ongoing research reveals that some 19 countries still have laws in place that discriminate against people with leprosy, for instance, making leprosy grounds for the annulment of marriage.

Twenty years ago the United Nations Beijing Declaration and Platform for Action committed to the elimination of discrimination against women, but girls and women affected by leprosy are still being rejected by society.  Women such as Ansu Bibi, West Bengal, share their stories in the report.  Says Ansu: “If I had been a man I believe I would have been taken for treatment earlier and not abandoned by my family.”

This cycle of gender discrimination leading to late diagnosis is evident in research from Kolkata[i]  that said, “Most women delayed going to the hospital, until their husband/guardian felt it was necessary.  They had to complete their household chores before setting out.  Time spent waiting at various service points conflicted with their domestic work, and lowered their social worth if they were away too long.”

Women with disabilities are recognized to be multiply disadvantaged and women and girls with disabilities are particularly vulnerable to abuse.  A study[ii] in Odisha, India, found that virtually all the women and girls with disabilities were beaten at home, 25 percent of women with intellectual disabilities had been raped and six percent of disabled women had been forcibly sterilized.

The key issues identified in the report that adversely affect women and girls with leprosy include the need to ensure early detection and effective diagnosis leading to a prevention of life-long disability, and addressing the trenchant and damaging stigma of leprosy through purposeful public education programs.

Bill Simmons, President and CEO of American Leprosy Missions, said, “Early detection is the first step in preventing disabilities and breaking transmission of the disease.  The sad reality for many girls and women with leprosy is that they already face substantial barriers in terms of gaining information or treatment.  We are working around the world to change that.”

American Leprosy Missions works in 11 countries to cure leprosy, care for those affected by the disease and actually end it by stopping transmission. Its holistic programs work to prevent disabilities, reduce stigma, restore people to their communities and empower them to become positive change agents. Collaborating with partners around the world, American Leprosy Missions works to raise leprosy awareness among women and girls and ensure they receive early detection and effective diagnosis.

The ILEP report makes a number of recommendations to empower the highly disadvantaged women and girls with leprosy and address the ongoing inequalities.

A downloadable version of the full Triple Jeopardy report can be found at: http://www.ilep.org.uk/leprosygirlswomenstigmareport

For more information or to request an interview, please contact:           

Name: Rosalyn Palmer  Name: Jan van Berkel, ILEP, President Name: Sarah Hesshaus, American Leprosy Missions, Communications Director
Tel: + 44 7940148224  Tel: +31 20 5950501

 

Tel: 864 241 1731
Email: [email protected] Email: [email protected]  Email:[email protected]

 

About ILEP, The International Federation of Anti-Leprosy Associations

Founded in 1966, ILEP is a Federation of 14 international non-governmental organisations. ILEP supports a Technical Commission of world experts on leprosy. ILEP’s Members co-ordinate their work in 63 countries where they spend over $60 million on 700 projects and around $2.5 million per year on leprosy research.

Members work with over half a million girls and boys, women, and men affected by leprosy, alongside the World Health Organization, Novartis (which provides anti-leprosy drugs for free) The Nippon Foundation and other philanthropic trusts, NGOs, governments and the support of some 500,000 individual donors.

 

About American Leprosy Missions

American Leprosy Missions, based in Greenville, South Carolina, is the oldest and largest Christian organization in the United States dedicated to curing and caring for people affected by leprosy and related diseases. It currently operates in countries across Africa, Asia and the Americas. During its more than 100-year history, American Leprosy Missions has provided holistic care to four million people around the world including medical treatment and training, community development and vaccine research.

 

[i] Research from Kolkata, Assessment of needs and quality care issues of women with leprosy, A S John et al., published in Leprosy Review.  Lepr Rev (2010) 81, 34–40https://www.lepra.org.uk/platforms/lepra/files/lr/Mar10/Lep34-40.pdf

[ii] Source: www.disabled-world.com/disability/