ILEP supported this submission by 14 organisations in Indonesia to the 78th pre-session of the CEDAW Committee. It proposes a series of government actions to promote the rights of women affected by leprosy in Indonesia within the CEDAW framework.
People affected by leprosy have been deeply impacted by the crisis generated by the COVID-19 pandemic. A working group of the Global Partnership for Zero Leprosy (GPZL) entitled Emergency advocacy for persons affected by leprosy hosted regional calls with 19 organisations of persons affected, as well as individuals, to gather their perspectives on their needs and challenges during the COVID-19 health crisis.
The working group found that, across geographies, some major concerns were consistently being talked about. These included access to health care, access to basic goods like food, clean water and soap, access to government support, access to stable livelihoods, access to information about COVID-19, and the impact of situations where the vulnerability of persons affected by leprosy is made worse by other vulnerabilities such as age, gender, stigma and mental health issues.
This month the working group has issued a comprehensive report which provides a depth of insight into these concerns, and includes a set of ten recommendations that NGOs and governments can take to address the needs and challenges of persons affected during the COVID-19 pandemic.
Particularly pertinent to ILEP members are recommendations about supporting grassroots organisations of persons affected in the COVID-19 context, supporting coalitions of grassroots organisations to elevate their voice, working with them to map the disproportionate impact of COVID-19 and available solutions and resources, and liaising with National Leprosy Programmes to ensure access to the continuum of care for persons affected, including access to leprosy reaction treatment, and the resumption of wound care services and self-care groups as soon as possible.
ILEP supported this submission by one of its member associations and a civil society organisation in Myanmar to the 37th cycle of the Universal Periodic Review, containing recommendations to prevent ongoing social exclusion and boost the inclusion of persons affected by leprosy in Myanmar.
ILEP partnered in this submission to the 37th cycle of the Universal Periodic Review of recommendations to prevent ongoing social exclusion and stigmatisation of persons affected by leprosy in Nepal.
Dear Minister,
As persons who have experienced Hansen’s disease, more commonly known as leprosy, we were disheartened to read international media reports today that quote you as calling on other nations to not “treat Italy as a leper colony due to coronavirus”. Other national and international leaders have used similar language in high profile speeches over the past.
While it might be good at grabbing headlines, the use of ‘leprosy’ as a negative metaphor has consequences far beyond the political realm, because it perpetuates old and outdated stereotypes and reinforces stigma and discrimination against us, individuals affected by leprosy.
Leprosy is not a disease of the past. More than 200,000 persons are diagnosed each year with leprosy, and there are believed to be more than two million individuals affected by leprosy who are undiagnosed and untreated. Negative social attitudes towards persons with leprosy create a barrier to treatment, and hinder efforts to stop the transmission of the disease globally.
Leprosy is a curable disease. However, individuals affected by this disease are still marginalized and excluded in many places around the globe. We ourselves have experienced being isolated by family and friends, fired from jobs, discriminated against and insulted by people, and many other violations of our human rights. That’s why we work hard every day to change this reality in every community.
Persons affected by leprosy are people with hopes and dreams like everyone else. Most individuals affected just dream of a normal life: A place to live and work peacefully, surrounded by their family and friends. They do not want to be defined by their disease.
The COVID-19 pandemic has been devastating to many, but has particularly impacted individuals affected by leprosy. This has been detailed in a letter by the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, Alice Cruz, a human rights leader who has also denounced the misuse of leprosy as a metaphor.
It is fundamental to ensure that the word leprosy is always used without the burden of stigma. Some countries have taken the initiative to change the name of the disease. However, while such change has not taken place all over the world, public figures and authorities have the duty to be careful with the thousands of persons affected and the millions that have had their lives impacted by this disease worldwide.
We therefore respectfully ask you to not use leprosy as a negative metaphor, and to instead support people in Italy, Europe and around the globe fighting to stop discrimination against individuals affected by leprosy.
We believe that this form of discrimination against us was not the objective of your statement, yet that’s the effect it has had on us. Confident in your good will, a few of us would be happy and honored to meet with you and discuss this issue further.
In the name of persons affected by leprosy around the globe,
HANDA (China)
IDEA Nepal
PERMATA (Indonesia)
Sam Utthan Apal Bihar (India)
FELEHANSEN (Colombia)
HEAL Disability Initiative (Nigeria)
IDEA Ghana
Morhan (Brasil)
Purple Hope initiative (Nigeria)
IDEA Nigeria
ENAPAL (Ethiopia)
APAL (India)
Comunidad de Apoyo (Paraguay)
Comunity of people affected by leprosy in Rajasthan (India)
IDEA Refaco (Kenya)
ILEP Panel of Women and Men affected by Leprosy
Global Leprosy Champions
IDEA INTERNATIONAL
Evelyne Leandro
Lilibeth Nwakaego Evarestus
Rachna Kumari
Jayashree P Kunju
L H Subodha Galahitiyawa
Amar Timalsina
José Ramirez
Mathias Duck
Mohan Arikonda
Ganesh Muthusamy
Sathya Arikonda
Linda Lehman
Braj Kishor Prasad
Sanjay Kumar
Anand Raj
Lucrecia Vazquez
Mainas Ayuba
Kofi Nyarko
Paula Brandao
Suresh Dhongde
Yurani Granada Lopez
Sofia Castañeda
Isaias Dussan
Felicita Bogado
Jimoh Hammed
Joshua T. Oraga
Dan and Babs Izzet