Nairobi, Kenya, March 25 (IPS) – During a visit to the Indonesian province of Papua, WHO Goodwill Ambassador for the Elimination of Leprosy Yohei Sasakawa dined with a man who was forcibly removed from his village and lived alone because he was affected by leprosy.
Over the years, Sasakawa has seen many other desperate and desolate people infected and affected by leprosy. Being marginalized, shunned, stigmatized, feared and dropped into the darkest and most remote corners of society.
“Until I became an ambassador, people affected by leprosy tended to no longer receive help. But I feel this is not the solution as this is contributing to self-stigmatization. I feel it is important for the public to know that they have been cured and are active.” Sasakawais also the Chairman of the Nippon Foundation, said.
“I want to speak up, even though they have been subjected to severe discrimination for a long time and fear that if they speak up, they will be targeted soon after.”
Sasakawa talks about her belief that people affected by leprosy should take the lead in eliminating prejudice and discrimination, and partnering with NGOs, academic institutions and many other efforts to eliminate leprosy.
Sasakawa spoke in support of the ‘Don’t Forget Leprosy’ campaign webinar series Sasakawa Leprosy Initiative with the theme ‘Eliminating Leprosy: Initiatives in Asia.’
Under the Sasakawa Leprosy Initiative, the WHO Goodwill Ambassador, Nippon Foundation and Sasakawa Health Organization work together to achieve a leprosy-free world.
“The ‘Don’t Forget Leprosy’ campaign is very important. COVID-19 keeps other diseases away, including leprosy. Leprosy continues to be a challenge. We must continue on our mission to detect, treat and eliminate leprosy,” Tarun Das, president of the Indian Sasakawa Leprosy Foundation (S-ILF), told the participants.
Sasakawa recounted Asia’s journey towards a long-term vision of no leprosy, no infection, no disease, no stigma and no discrimination. Sasakawa talked about the many challenges encountered along the way, the victories and the journey into a world free of leprosy.
Accomplishments include the availability and provision of effective leprosy treatment and especially the important role of the Nippon Foundation in reducing the number of leprosy patients by ensuring treatment with Multiple Medicines ( MDT) is available and free of charge to all people affected by leprosy.
Sasakawa also told participants about the Dalai Lama Sasakawa Scholarship with matching funding from the Nippon Foundation to support children from families affected by leprosy.
“It hasn’t been an easy journey,” he says, but Sasakawa’s answer to these challenges is: “We won’t know until we try.”
Dr David Pahan, country director of Lepra Bangladesh, spoke of leprosy as a neglected tropical disease and least prioritized by the health system.
He told participants that the leprosy prevention program faces sudden and significant challenges posed by COVID-19, leaving those affected by leprosy very vulnerable.
“In response, we have provided emergency advice and support to people affected by leprosy or acute disability in households threatened by the COVID-19 outbreak in Bangladesh.” Pahan told the participants.
Pahan emphasizes the need for early treatment to prevent disability and encourages partnerships with Civil Society Organizations to help combat stigma and improve leprosy treatment outcomes.
Erei Rimon, Director of the National Leprosy Elimination Program, Ministry of Health and Health Services, Republic of Kiribati, talks about the small island nation in the Central Pacific with an estimated total population of 119,490. The registered leprosy prevalence per 10,000 population is 12.9 percent.
Rimon reported continued efforts, such as increasing the capacity of health care workers to detect and manage leprosy and monitoring leprosy sufferers in leprosy treatment, resulted in significant reductions in leprosy. from 241 defaulters in January 2021 to 162 defaulters in December 2021.
Das welcomed the ongoing cooperation, saying that Asia deserves special attention, especially Southeast Asia, an area where leprosy is endemic. Asia is one of six WHO regions, where 127,558 new cases of leprosy will be detected in 2020 across 139 countries, including India, Nepal and Bangladesh – 8,629 of these are children under the age of 15.
Despite COVID-19 disrupting program implementation and reducing new leprosy cases by 37% in 2020 compared to 2019, Asia, and especially Southeast Asia, reported an estimated 84,818 cases. in a total of 127,558 cases.
Against this backdrop, Das told participants that the S-ILF is dedicated to the socio-economic integration of people affected by leprosy to pull them out of low-cost dependence and earn a living by dignity.
S-ILF’s core business is promoting business opportunities, providing small loans to businesses and providing scholarships to children from families affected by leprosy.
Webinar participants heard heartbreaking testimonies.
“My name is Maya Ranaware, treasurer of the Leprosy Association. I am a woman affected by leprosy and have been cured. (I have) faced and (are) facing challenges related to leprosy. I experienced the most painful stigma from family, loved ones and society,” she told participants.
This is the life of women affected by leprosy, says Ranaware, most of whom are poor, cannot read or write, and have no other vital or psychosocial support system. She calls for social awareness to change this trajectory so that women affected by leprosy are not forgotten.
Ranaware’s views are echoed by Yuliati Gowa, President of the South Sulawesi branch of PerMaTa Indonesia, who has criticized myths and misconceptions about leprosy. Gowa warns that these levels of misinformation will frustrate efforts towards a leprosy-free world.
Dr. Takahiro Nanri, executive director of Sasakawa Health Foundation, moderated a Q&A session between the Goodwill Ambassador and the participants. This provides an opportunity to explore whether leprosy can be eliminated by 2030.
While this is a big vision, Sasakawa says it has helped keep the leprosy eradication movement on track.
Despite the relentless campaign to eliminate leprosy, Sasakawa says: “I still don’t think I’ve done enough.”
For a long time, he said, “leprosy was considered a divine punishment that was either hereditary or highly contagious. Until MDT switched treatments, people had a negative image of leprosy still in their DNA. We have to do more to get rid of it.”
Report of the United Nations Office IPS
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