Presentation
Leprosy, also known as Hansen’s disease, is an infectious disease caused by the bacillus Mycobacterium leprae. It is one of the oldest diseases known to humankind and has been feared through the centuries for its disfiguring ef-fects. Today, thanks to modern chemotherapy, there is an effective cure. With early diagnosis and prompt treatment, the disability associated with leprosy can be prevented.
Since the introduction of multidrug therapy (MDT) in the 1980s, an esti-mated 16 million people have been cured of the disease and leprosy has been eliminated as a public health problem in almost every country. Today, around 200,000 new cases of leprosy are reported worldwide each year.
According to the WHO’s most recent Global Leprosy Update, 94% of all new cases in 2014 were attributed to 13 countries: India, Indonesia and Brazil each reported more than 10,000 cases, while DR Congo, Ethiopia, Madagascar, Nigeria, Tanzania, Bangladesh, Myanmar, Nepal, Sri Lanka and the Philippines each reported between 1,000 and 10,000 cases.
Although annual case numbers have declined compared to the past, leprosy continues to pose many problems. Patients diagnosed late may alre-ady be suffering from severe nerve damage and irreversible disabilities that require lifelong care. New cases in children continue to be detected, a clear indication that transmission is ongoing. In addition, there are hidden, localized hotspots of leprosy transmission, often in hard-to-reach areas, even in countri-es that have already achieved the status of ‘elimination as a public health problem’, which the WHO defines as a prevalence rate of leprosy of less than 1 case per 10,000 people.
In order to further reduce the disease burden, concerted efforts are being made by WHO, governments of endemic countries, Church institutions and other faith communities, international NGOs and associations of people affected by leprosy, but still more work needs to be done.
Leprosy has another aspect that imposes a heavy burden on those it affects. Many myths and misperceptions about leprosy persist. While drugs can cure the disease, they cannot erase the social stigma and prejudice that come from a lack of public understanding. Discrimination against people affected by leprosy remains severe in some parts of the world. Denied the same opportu-nities for education, employment and marriage as other members of society, people affected by the disease find themselves marginalized and hard-pressed to support themselves. Their access to social services is in some instances limited or non-existent and their perfectly healthy children may be refused admission to school. At stake here are the rights and dignity of people af-fected by leprosy and their families, as well as their access to much needed care and support.
The plight of the affected brothers and sisters calls for concrete solidarity and authentic fraternity in line with what – during this Jubilee Year of Mercy– we are taught by Pope Francis, who exhorts us to imitate Christ, and there-fore “before the poor or the sick, we should not be afraid to look the afflicted person in the eye, and be close to the suffering person with tenderness and compassion” (Angelus 15 February 2015).
Embracing this call and wishing to enhance the commitment to caring for people with leprosy and supporting those who have been cured of it, and in order to increase the sensitivity of men and women of goodwill, the Pontifical Council for Health Care Workers through its The Good Samaritan Foundation and The Nippon Foundation have organized a two-day International Sympo-sium around the theme ‘Towards Holistic Care for People with Hansen’s Dise-ase, Respectful of Their Dignity’ which will take place on Thursday and Friday 9-10 June 2016 in Rome at the ‘P. Agostino Trape’ auditorium of the ‘Augusti-nianum’ Patristic Institute in Via Paolo VI, n. 25.
The meeting which is organized with the collaboration of the Raoul Fol-lereau Foundation, the Sovereign Order of Malta and the Sasakawa Memorial Health Foundation, will be attended by some two hundred participants, com-posed of representatives from Ministries of Health, non-governmental organi-zations working in leprosy, people affected by leprosy and their associations, Church institutions, religious leaders, academic researchers and the media.
Among others, the two-day meeting wishes to: build awareness of ge-neral public about leprosy and its medical, mental and social consequences; learn from people affected by leprosy and their family members about their experiences; share new initiatives towards the elimination of the disease, stig-ma and discrimination against people affected by leprosy; underscore the role that the Catholic Church and other faith communities already play in tackling leprosy and discrimination, and how this might be further enhanced; bring to-gether faith leaders from different religions and seek support in disseminating correct information about leprosy and a message of tolerance and inclusion.
This international meeting will be composed of six sessions. The first session will deal with the current state of the global fight against leprosy as a medical issue. The second session will discuss the human rights aspect of le-prosy, inviting experts from the UN Human Rights Council Advisory Committee and other human rights organizations to speak. The third session will look at the role of the Church and other faith-based organizations in tackling leprosy and include an inter-faith dialogue between religious leaders on the role of re-ligion in enhancing awareness of the disease and dispelling discrimination. The fourth session will present some good practices. The fifth session will feature first-person accounts from people affected by leprosy and their associations. Then the sixth and final session will entail a presentation of some project pro-posals in favor of people with leprosy.
Conclusions and recommendations will be proposed at the end of the symposium by the participants.
It is our sincere hope that the meeting will enhance awareness about the plight of our brothers and sisters affected by leprosy, foster sharing of experience in order to learn from each other about best practices in care and support, as well as spur commitment to the elimination of leprosy and the social stigma and discrimination of those affected by the disease.
H.E. Zygmunt Zimowski, President of the Pontifical Council for Health Care Workers (Holy See)
H. E. Yohei Sasakawa, Chairman of The Nippon Foundation (Japan) World Health Organization Goodwill Ambassador for Leprosy Elimination Japanese Government Goodwill Ambassador for the Human Rights of Persons Affected by Leprosy
