People struck by Hansen’s disease, or leprosy, were the subject of an international conference in Rome last week.

Jointly organized by the Vatican’s Pontifical Council for Healthcare Workers and a number of charitable foundations and organizations, the June 9-10th conference brought together leading experts in treating and caring for those with Hansen’s disease from across the world to discuss the theme, “Towards Holistic Care for People with Hansen’s Disease, Respectful of their Dignity.”

Although curable, around 200,000 new cases of Hansen’s disease are diagnosed each year worldwide and this has a devastating impact on their social and economic future, forcing patients, sometimes with their entire family, to live on the margins of society.  The disfiguring yet curable disease is still very prevalent in many poor areas of the world, especially in India, Brazil and Indonesia.

Among those participating in the conference was Indian priest Fr. Arputham Arulsamy, assistant director of the Catholic Health Association of India or CHAI. In an interview to Vatican Radio, Fr. Arulsamy spoke about the situation of Hansen’s disease in India.

Roughly 200,000 new cases are discovered each year, the majority of which – about 70 percent – come from India, Brazil and Indonesia. Other cases of infection could exist, but are difficult to find due to the fact that many people in these countries live in remote areas that are either difficult or impossible to access.

The event will also welcome 30 individuals who have been cured from the disease, some of whom will share their testimonies of suffering and societal exclusion – at times even from their families – due to misconceptions and cultural prejudices toward those infected with Hansen’s Disease.

“The problem with leprosy is that even if these people are cured of this disease, they would still be facing stigma as well as discrimination from society and from the villages where they live, just because they used to be a patient of leprosy,” Sasakawa said.

Up until recently, certain countries had laws preventing people with the disease, even those who have been cured, from getting onto trains or public buses. Some laws have even allowed for divorce should one spouse become infected.

Sasakawa is president of the Nippon Foundation, a non-profit dedicated to carrying out various philanthropic activities. It is among the organizations which distribute medicine free-of-charge to individuals infected with leprosy.

He is also the Japanese government’s Goodwill Ambassador for the Human Rights of People Affected by Leprosy and the World Health Organization’s Goodwill Ambassador for Leprosy Elimination.

In some cases, those affected by leprosy were barred from competing to become a parliamentarian, Sasakawa explained, noting that even today countries make it impossible for those affected by leprosy to immigrate, barring entry for those either sick or cured.

“Many people talk about the disease of leprosy, however there aren’t many people who have shaken hands with those patients or the infected people, or who have touched them or who have heard human history directly from these people who experienced that disease,” he said.

The testimonies from cured individuals, then, will be key to ending the stigma surrounding the disease, he said, because many people have never had any real contact with the patients, who often live a “very harsh and painful life throughout their experience” of illness.

“It’s not us who should be speaking on behalf of these people, but the patients and the infected people themselves…so that the public would be able to feel more sympathy and show more empathy to these people and their lives of hardship,” Sasakawa said.

He voiced his expectation that religious leaders who gather for the conference would cooperate in disseminating the correct information about leprosy, and would spread the message to their faithful that “people should not discriminate against people infected with leprosy.”

Sasakawa also voiced his hope that individuals who have already been cured would become more vocal, rather than staying silent due to the fear of discrimination.

Fr. Jean-Marie Mate Musivi Mupendawatu, secretary of the Pontifical Council for Pastoral Assistance the Health Care Workers, was also present for the news conference.

The conclusion of the event was a Mass celebrated by Pope Francis , for the Jubilee of Sick and Disabled Persons.

 

 

source:radiovaticana