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– A new dawn has arrived, and it is thanks to the work of Yohei Sasakawa, the WHO Goodwill Ambassador for Leprosy Elimination, that people affected by leprosy now have a voice. Express.
This is what Faustino Pinto, a person affected by leprosy and vice-national coordinator of the Movement for the Reintegration of Those Affected by Hansen’s Disease (Morhan), said during a webinar on “The Disease of Hansen / Leprosy as a Human Rights Issue ”.
Sasakawa, who is also the President of the Nippon Foundation, and Dr Alice Cruz, United Nations Special Rapporteur on the Elimination of Discrimination against People Affected by Leprosy, spoke during the webinar. Guests included Caroline Teixeira, Miss World Brazil 2021 and Julia Gama, Miss Universe Brazil 2020. The Sasakawa Health Foundation, in collaboration with Morhan, were co-organizers. The event is part of a 10 month campaign called “Don’t Forget Leprosy”.
Famous guests applauded his feelings.
Gama, also working with Morhan, told IPS: “Hansen’s disease has a cure, and I think so does the stigma. I will use my voice to make sure those who have been silenced are heard. I believe that unity is our strength, and together we can eradicate Hansen’s disease.
Pinto praised Sasakawa for his long-standing commitment to improving the lives of those affected by the disease.
“We were taught to just accept what we were told: take the medicine, keep the appointments, open your mouth to check if you took the medicine, don’t give up on the treatment,” Pinto explains. That changed when Sasakawa got involved.
Pinto called for people affected by leprosy to be heard, seen and involved in efforts to eradicate leprosy.
He congratulated Sasakawa and the Foundation “for always talking about us and including us in the debate” and for “really listening to us and giving us a voice”. It was this voice that Pinto used to appeal to the global community, saying, “Remember Hansen’s disease. Do not forget us.
At the heart of the discussions was the desire to draw the world’s attention to an equal disease, a medical and social problem. In addition, the meeting was a key platform where participants were invited to address leprosy as a human rights issue.
While concerted efforts have now led to less than one case of leprosy in a population of 10,000 people according to WHO estimates, with at least 200,000 new cases reported each year, experts say leprosy is still of great concern.
“There are over a billion people around the world living with disabilities, including people affected by leprosy. We need to create an inclusive society where everyone can get an education, find work and get married if they want. People have passion and motivation. Often all they are missing is opportunities, ”says Sasakawa.
Governments’ efforts to respond to COVID-19 are believed to have set back progress towards eradicating leprosy.
“People affected by leprosy face multiple forms of discrimination. They are often discriminated against on various grounds – such as leprosy, but also gender, age, poverty, disability, sexuality and race. They also fight against state and societal violence and interpersonal violence, ”says Cruz.
“There is such capacity and potential in the world, and having everyone participate in the company will create a truly wonderful future. This is why it is important that people affected by leprosy have confidence and speak up, ”Sasakawa emphasizes.
“To support them, the Sasakawa Health Foundation and the Nippon Foundation help them build their organizational capacity. I would like to see a society in which everyone is active, able to express their opinions to the authorities with confidence, and their contribution is valued, ”he adds.
Over the course of ten months, the campaign, which builds on Sasakawa’s 20th anniversary as a Goodwill Ambassador, will raise awareness of why the world should stay focused on leprosy.
“It was a great honor to be chosen Miss World Brazil and thus become an ambassador for the fight against Hansen’s disease in Brazil, the country with the highest incidence of the disease in the world,” Teixeira told IPS.
“In the coming days, I will be part of a delegation from Morhan visiting several towns in the north of the country, sensitizing governments to actions in favor of the rights of those affected. We will certainly unite many voices so that Hansen’s disease is not forgotten, ”she said.
However, if left untreated, leprosy can lead to permanent disability. Globally, three to four million people are living with some form of disability due to leprosy, according to WHO estimates.
There are growing concerns that COVID-19 and fear of discrimination are further preventing people from reaching hospitals, leading to delays in diagnosis and treatment.
As it stands, WHO statistics for 2020 show an estimated 40% drop in the detection of new leprosy cases, which experts warn will lead to increased leprosy transmission and more cases. disability.
Discrimination and stigma remain a major concern for Sasakawa. He denounces that “the people who should be part of society remain isolated in colonies facing difficulties. The more you look at them, the more you see the restrictions they live under, including legal restrictions in some cases. Isn’t it strange that a person cured of an illness cannot take his place in society?
“I realized belatedly that if the human rights aspect was not addressed, then the elimination of leprosy in the true sense of the term would not be possible. I want to create a society where everyone feels fully engaged, able to express their opinions and appreciated. The era to come must be one of diversity, and for that we need social inclusion. “