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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

SYMPOSIUM: An Interfaith Call to Action

Vatican gathering urges religious leaders to help end discrimination.

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The crowds in St. Peter’s Square on June 12 at Holy Mass for the Jubilee for the Sick and Disabled

A recent symposium at the Vatican issued a call for leaders of all faiths to contribute to the elimination of discrimination against persons affected by leprosy as a matter of urgency, and condemned the use of discriminatory terminology that continues to reinforce old perceptions of the disease.

“Towards Holistic Care for People with Hansen’s Disease, Respectful of Their Dignity” took place during the special Year of Mercy designated by Pope Francis from December 2015 to November 2016. It formed part of the activities for the Jubilee for the Sick and Disabled that culminated in Holy Mass in St. Peter’s Square on June 12.

Around 200 people from some 45 countries took part in June 9-10 symposium, which was organized by the Pontifical Council for Health Care Workers, the Good Samaritan Foundation and The Nippon Foundation, in cooperation with Fondation Raoul Follereau, the Sovereign Order of Malta and the Sasakawa Memorial Health Foundation.

They heard speakers covering medical and scientific aspects of leprosy, human rights issues, the contribution of the Catholic Church and other faith communities, examples of good practices and projects, as well as powerful testimonies from people affected by leprosy about the impact that the disease — and society’s response to it — has had on their lives.

MEDICAL CHALLENGES

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Chalikandi: Islam rejects the idea that leprosy is a curse of God.

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Mgr. Mupendawatu: We are all called upon to make amends.

On the medical and scientific front, the current leprosy situation was reviewed by the team leader of the WHO’s Global Leprosy Programme, Dr. Erwin Cooreman. Some 200,000 new cases are reported to the WHO each year, and Dr. Cooreman said that each represents a case of disease but also a person who may be ostracized from his or her community.

Dr. Marcos Virmond, the president of the International Leprosy Association, highlighted some of the key challenges to be overcome if leprosy is to be defeated. These included lack of government commitment and resources for leprosy control, lack of clinical expertise, and the need to break transmission of the disease.

Dr. Ann Aerts, CEO of Novartis Foundation, which donates the multidrug therapy (MDT) used to treat leprosy, stressed the importance of using new tools to accelerate diagnosis, while Dr. Stewart Cole, president of the Fondation Raoul Follereau’s Medical Commission, argued for a standardized platform for disease testing that would help to reduce stigma.

But beyond what these experts had to say about the epidemiology and science of leprosy, the real significance of the symposium for many lay in finding out what message would come from the Catholic Church and other faith communities with regard to fostering dignity and respect for persons affected by this disease and alleviating the discrimination and suffering they face.

In that regard, Mgr. Jean-Marie Mupendawatu, secretary of the Pontifical Council for Health Care Workers, spoke unequivocally when he said: “Many rules set by religions have been adopted by states. They are not always good. We are sorry; but saying sorry is not enough....We are all called to make up for this. There are practices that are not good, and we need to fight them.”

Abdel Latif Chalikandi, advisor to the Tawasul Europe Centre for Research and Dialogue in Rome, said that Islam rejects the idea that leprosy is a curse of God or the result of past sins, and that no disease is an excuse for abandoning family. But he acknowledged that “cultural and family pressures” and “selective quoting of the Koran” result in people being ill-treated.

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Organizers brief the press on the symposium’s objectives.

On the issue of restoring human rights, the symposium noted that a critical step forward has already been taken with the adoption of a UN resolution on “Elimination of discrimination against persons affected by leprosy and their family members” in 2010, but that much work still needs to be done to see that accompanying Principles and Guidelines are fully implemented. “Practical measures are needed to cajole states to act,” said Dr. Obiora Okafor, chairperson of the UN Human Rights Council Advisory Committee, especially with regard to the scrapping of discriminatory laws.

“Many rules set by religions have been adopted by states. They are not always good.”

PERSONAL TESTIMONIES

Some of the most compelling presentations came from those best placed to talk about the disease: the people with first-hand experience of it.

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Different cultures and faiths come together at the Vatican.

Jose Ramirez, Jr., from the United States, who is a Catholic, recalled being given the last rites and taken by hearse from his hometown in Texas to a leprosarium in Louisiana after being diagnosed with the disease. “My mother believed that God was punishing her through me,” he said.

Maya Ranaware, from India, said that much has changed since she was humiliated at school for having leprosy and not allowed to stand in a queue to buy vegetables or ride public transport. Nevertheless, she added, “Most of us have inner fears of being rejected or not accepted by mainstream society. I must admit it is not easy to let go of this feeling.”

Attending from Japan, Masao Ishida described being involuntarily placed in a leprosy sanatorium at the age of 10. He is now 80. There were long years of “sadness, harshness and bitter experiences,” but through decades of activism he was able to regain his human rights. “I’ve walked my life path with Hansen’s disease. I didn’t have a choice. But it was far from being a life without meaning.”

From Colombia, Maria Eloisa Castro recalled how it took 20 years for her to be properly diagnosed. Today, the 80-year-old visits homes to explain to families what to do if they notice symptoms. “It is common to find health professionals who don’t know much about leprosy or who think it disappeared long ago,” she said.

Conclusions and Recommendations based on the proceedings were drawn up by Rev. Fr. Michele Aramine, professor of theology at the Sacred Heart Catholic University of Milan and presented in draft form at the final session. In addition to urging religious leaders to use their influence to spread understanding of leprosy and calling for an end to the use of discriminatory language that reinforces stigma, the document also recommends further research to develop new tools for prevention, diagnosis and treatment of leprosy. (See following pages.)

‘A SHOWER OF BLESSINGS’

Delegates who stayed on after the symposium ended were invited to attend the Holy Mass for the Jubilee for the Sick and Disabled celebrated by Pope Francis in St. Peter’s Square. A three-hour wait in the rain before Mass began — “a shower of blessings” in the words Kofi Nyarko of IDEA Ghana — did nothing to dampen their spirits. They also appreciated the fact that the Pope made special reference to Hansen’s disease in his remarks.

Nyarko, who had previously visited the Vatican for the canonization of Father Damien, was in no doubt as to the symposium’s significance. “The Catholic Church has a big role to play. What Pope Francis says goes all over the world. If he adds his voice to ending the stigma and discrimination, everything will have to change,” he said.