Hyderabad, 8th November: The 2nd Global Forum of People’s Organizations on Leprosy, also known as Hansen’s Disease, was organized in Hyderabad, India from November 6 to November 8. Around 100 representatives of 20 People’s Organizations from 21 countries took part. The theme of the forum was “Strengthening and maximizing the roles and capacities of People’s Organizations to promote the dignity of persons affected by Hansen’s disease.” Miss World Brazil, Ms Letícia Cezar da Frota and Miss Supranational India, Ms Pragnya Ayyagari attended the three days event. WHO Goodwill Ambassador for Leprosy Elimination, Mr Yohei Sasakawa, who together with The Nippon Foundation and Sasakawa Health Foundation has made up the strategic alliance known as the Sasakawa Leprosy (Hansen’s Disease) Initiative, also attended the event. The three days residential event witnessed the sessions on capacity building of People’s Organizations, inclusion, and partnerships. The forum was organized by Sasakawa Leprosy (Hansen’s Disease) Initiative as part of its “Don’t Forget Leprosy” campaign launched during the COVID-19 pandemic.
Speaking at the conclusive meeting on the last day of the forum, Mr Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination said: “Until recently, people affected by leprosy have had difficulty asserting their rights. It was a deeply moving experience for me to see representatives of People’s Organizations from around the world come together to hold the 2nd Global Forum. They are united and raising voice together. I hope that all participants will go back to their countries, tell this to their peers, and unite even more. This will lead to the improvement of the living condition of all people affected by leprosy. It is truly wonderful to see such a spontaneous movement coming from among them.”
Endorsing his call for the change, Ms Supranational India for 2023, Ms Pragnya Ayyagari, who hails from the host city of Hyderabad said that “I didn’t know about Leprosy until I attended this event. I think this issue should be taken to the children and youth. Their opinions about the disease will definitely change. I am taking back a lot of good learnings from this event, which will remain with me all through the life.”
Ms Maya Ranavare, President of Association of People Affected by Leprosy (APAL) spoke on behalf of persons affected by Leprosy in India. She spoke about the changing scenario in the world due to the awareness around the disease by organizations like Sasakawa Health Foundation. She further said: “The resolution of this forum will be presented before the 21st International Leprosy conference tomorrow by me. I am the voice of many who have faced stigma and discrimination. Thankfully, the situation is improving now.” Also speaking at the concluding sessions, Mr Kofi Nyarko from IDEA Ghana and Mr Faustino Pinto from MORHAN, Brazil, echoed the voices of Ms Maya Ranavare.
Coming in the wake of three difficult years in which communities of persons affected by leprosy have been hard hit by the impact of the COVID-19 pandemic, the forum focused on empowering their organizations to tackle more effectively the remaining challenges in leprosy as seen from the perspective of those who have personally experienced the disease. Many of these organizations have been active in the Don’t Forget Leprosy campaign, which was launched in August 2021 and is being led by WHO Goodwill Ambassador Sasakawa to ensure that measures against leprosy and support for those it affects are not neglected amid the pandemic.
The program included sessions on capacity building, forming good partnerships, and achieving inclusion, with participants sharing best practices, while on the final day there were a number of side events. Around 100 representatives of 21 organizations from 20 countries including the UN Special Rapporteur on leprosy, Ms Alice Cruz, as special guest participated in these events.
Speaking for the cause, Ms World Brazil 2022, Ms Letícia Cezar da Frota said: “I am very motivated from this event. After my return to Brazil, I will dedicate my time for persons affected by Leprosy. Together with Miss Supranational India, I want to raise awareness about Leprosy across the world.”
The organizations will prepare a resolution together which will be presented during the 21st International Leprosy Congress, being held in Hyderabad from 9th November.
Leprosy, also known as Hansen’s disease, is an infectious disease that mainly affects the skin and peripheral nerves. Prior to the COVID-19 pandemic, which disrupted case-finding activities, over 200,000 new cases were being reported annually. Leprosy is curable with multidrug therapy, but left untreated can result in permanent disability. An estimated 3 to 4 million people are thought to be living with some form of disability as a result of leprosy. Although completely curable, many myths and misunderstandings surround the disease. In various parts of the world, patients, those who have been treated and cured, and even their family members continue to be stigmatized. The discrimination they face limits their opportunities for education, employment and full participation in society.