The Bergen International Conference on Hansen’s Disease held to realize a leprosy-free world

A two-day conference commemorating the discovery of the bacillus that causes leprosy 150 years ago took place in Bergen, Norway, on June 21-22, 2023.

Organized by the Sasakawa Leprosy (Hansen’s Disease) Initiative and the University of Bergen, the conference in the city where Norwegian Dr. Armauer Hansen identified M.leprae in 1873 was attended by around 200 people, including medical, human rights and historical preservation experts, as well as researchers, NGOs and organizations of persons affected by the disease.

In a speech to delegates, WHO Goodwill Ambassador for Leprosy Elimination Yohei Sasakawa, who also serves as chairman of The Nippon Foundation, acknowledged the extraordinary advances made by medical professionals since Dr. Hansen’s discovery that leprosy was neither a curse nor a punishment from God but a chronic disease caused by a bacillus. But he noted that further action is needed to combat stigma and discrimination, pointing out that as many as 130 discriminatory laws against leprosy are still in place in more than 20 countries. “Today, when respect for human rights is a must, it is unacceptable to leave such a large-scale and serious human rights violation unaddressed,” he said.

Dr. Tedros said that much progress has been made in the fight against leprosy since the discovery of M. leprae and the birth of the WHO 75 years later, but that “much remains to be done towards our shared goals of zero disease, zero disability and zero discrimination.” He also noted that more effort is needed to recover from health system disruptions caused by the COVID-19 pandemic.

Türk said that to better the lives of people affected by leprosy, “we need to address the physical symptoms, but we also need social and behavioral measures to address stigma and discrimination. We need comprehensive strategies with access to quality care, education, and social protection,” and told participants that “together we can make a real difference in ending leprosy, which causes immense preventable and unjustifiable suffering for thousands of people.”

Closing remarks were delivered by Dr. Takahiro Nanri, executive director of Sasakawa Health Foundation. He noted that this was the third international conference that the foundation has helped to organize since launching its “Don’t Forget Leprosy” campaign in 2021 with the purpose of helping to ensure that the disease and those affected by it are not overlooked amid the coronavirus pandemic.

“Our purpose in organizing these conferences is to make the world aware that there are still many people suffering from Hansen’s disease and its consequences; to build momentum for collaboration toward the realization of a leprosy-free world; and to provide a setting for both formal and informal exchanges that can be a catalyst for innovative solutions that we as a foundation are ready to support,” he said.

Opening session
Tedros Adhanom Ghebreyesus, Director-General, WHO
Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination
Volker Türk, United Nations High Commissioner for Human Rights
Ingvild Kjerkol, Minister of Health and Care Services, Norway
Statement by Organizers
Margareth Hagen, Rector, University of Bergen
Yuliati, Vice President, PerMaTa Indonesia
Lorentz Irgens, Emeritus, University of Bergen
Session 1: Medical Challenges
Paul Fine, Professor, London School of Hygiene & Tropical medicine
Panel discussion with scientific perspectives
Vivek Lal, Team Leader, Global Leprosy Program, WHO
Panel discussion with practical perspectives
Session 2: Human Rights and Dignity
Jayashree P Kunju, Director, IDEA International with People’s Organizations on Hansen’s Disease
Alice Cruz, UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members
Shigeki Sakamoto, Professor Emeritus, Kobe University
Geoff Warne, CEO, International Federation of Anti-Leprosy Associations (ILEP)
Pierre-Yves Thiebault, President, French Raoul Follereau Fondation
Artur Custódio Moreira de Sousa, Volunteer, Morhan, Brazil
Special Session
“The Island -From Fact to Fiction-” by Victoria Hislop, Author, UK
”My great grandfather, my mother, the documents, and me” by Abbi Patrix, Great grandson of GA Hansen, France
Session 3: History Preservation – Learning from the Past
Mesele Terecha, Armauer Hansen Research Institute, Ethiopia
Lim Yong Long, Supervisor, Universitiy, Technologi Malaysia
Laurinda Rosa Maciel, Researcher, Oswaldo Cruz Foundatin, Brazil
John Manton, Honorary Assistant Professor, London School of Hygiene & Tropical Medicine, UK
Arturo Cunanan, Representative, Culion Museum
Jose Manuel Amorós, Director General, Fontilles, Spain
Cristina Nogueira, CEO, CultureAge (Rovisco Pais), Portugal
Charmaine Woodward, President, Ka ‘Ohana O Kalaupapa, USA and her son
Closing session
Takahiro Nanri, Executive Director, Sasakawa Health Foundation