Pope Francis and Yohei Sasakawa, Goodwill Ambassador for Leprosy Elimination led a global appeal to end leprosy and the stigmatization of those impacted. The pope’s statement was read to the second international symposium on Hansen’s Disease in Rome hosted by the Holy See, Sasakawa Leprosy (Hansen’s Disease) Initiative, the French Raoul Follereau Fondation and the Italian Association Amici di Raoul Follereau. Credit: Joyce Chimbi/IPS

By Joyce Chimbi
NAIROBI, Jan 24 2023 (IPS)

In the four years preceding the COVID-19 pandemic, the spread of leprosy or Hansen’s disease, seemed to be losing steam. Between 2016 and early 2020, new case numbers remained more or less constant.

The coronavirus pandemic has impacted leprosy services, making it harder for those affected by leprosy to receive treatment and disability care and disrupted leprosy case findings, leading to a large drop in cases from 2020 despite many undiagnosed and untreated leprosy cases.

“Leprosy is an ancient infectious disease, but it is curable. Early detection and treatment of leprosy are of utmost importance. We must promote finding new cases and ensuring they are treated. I have seen many people with disability for lack of treatment,” says Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination.

In an effort to draw world attention to zero leprosy transmission, zero discrimination, and zero exclusion, the Holy See, Sasakawa Leprosy (Hansen’s Disease) Initiative, the French Raoul Follereau Fondation and Italian Association Amici di Raoul Follereau are co-hosting the second international symposium on Hansen’s Disease in Rome, January 23 to 24, 2023.

The first international symposium was similarly held at the Vatican and was titled ‘Towards Holistic Care for People with Hansen’s Disease, Respectful of their Dignity’. The outcome was a lull in the spread of Hansen’s disease until the COVID-19 pandemic.

In the wake of disruptions caused by COVID-19, speakers and participants expressed fears and concerns that the situation has and will worsen.

The ongoing symposium is, therefore, a global appeal to leave no one behind in the fight against leprosy and to end stigma and discrimination. Additionally, to examine the progress made since the first international symposium and the barriers that still stand in the way to a leprosy-free world.

Importantly, the symposium included the launch ceremony for Global Appeal 2023 to End Stigma and Discrimination against Persons Affected by Leprosy.

As such, the symposium is an opportunity to discuss zero discrimination and hear testimonials and best practices with special attention to the role of religious leaders, perspectives of key actors from the global leprosy community, as well as recommendations and suggestions on the best way forward.

More broadly, the symposium is a platform for consideration of how socially vulnerable individuals and communities, especially those consisting of persons with disabilities due to diseases, have been affected by the impact of the coronavirus pandemic and propose ways to lift their plight.

Those who spoke on behalf of symposium organizers, including Pope Francis, emphasized that leprosy is curable and treatment in the early stages can prevent disability. Left untreated, leprosy can cause progressive and permanent damage to the skin, nerves, limbs and eyes.

A statement read out on behalf of Pope Francis encouraged the global community to emulate the good Samaritan, not to turn a blind eye and pass by as people affected by leprosy as shunned and ostracized from the community.

“We have become accustomed to passing by. We cannot forget our brothers and sisters. This is a wonderful opportunity to build inclusivity. To work on three areas: zero disease, helping those affected through care and treatment, spiritual nourishment and reinstating them back into the society,” the statement read in part.

Speaking at the symposium, a representative of Novartis said multidrug therapy (MDT) is the backbone towards zero leprosy, and its free availability has reduced the global disease burden by 95 percent in the past three decades.

Novartis MDT donations have helped to treat more than 7.3 million patients since 2000, significantly interrupting the transmission of leprosy and prevent disabilities. But there is still a long way to go.

Novartis said that an estimated 200,000 new cases of leprosy are detected every year, and an estimated 2.3 million people are living with a disability caused by leprosy.

Among the new cases, WHO says approximately 7,198 new cases were detected with grade 2 disabilities (G2D), and the new G2D rate was recorded at 0.9 per million population.

Disability in leprosy is defined by the WHO grading system; grade 0 indicates an absence of disability, while grade 1 means loss of protective sensibility on eyes, hands and feet. Grade 2 is more severe as it indicates the presence of deformities or visible damage to the eyes, hands or feet.

Sasakawa emphasized that it is not enough that people receive treatment, “for even after they are medically treated and cured, they remain afflicted by leprosy. Discrimination is age-old, deep-rooted and ongoing.

Novartis says collaboration is key and re-engaging those who may have been lost along the way. In all, speakers such as Dr Benedict Quao stressed the need to focus, prioritize, strategize and work together at the national, regional and global levels. This, he said, will produce a sustainable roadmap.

Quao leads the National Leprosy Programme in Ghana and is also a member of the Global Partnership for Zero Leprosy, underpinned by how aligned action can boost progress towards zero leprosy and zero stigma and discrimination.

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Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination and Chairperson of the Nippon Foundation, thanks participants at a webinar ‘Raising Awareness about Leprosy, Role of Health Professionals at the Grassroots Level’ organized by the Sasakawa Leprosy Initiative. He is with other participants from Japan, India and Nepal in the “Don’t Forget Leprosy” campaign event.

By Joyce Chimbi
Nairobi, Kenya, Jan 20 2022 (IPS)

The human rights of people affected by leprosy are central to Yohei Sasakawa’s concept of a leprosy-free world.

Sasakawa, the WHO Goodwill Ambassador for Leprosy Elimination and Chairman of the Nippon Foundation, was speaking at a webinar ‘Raising Awareness about Leprosy, Role of Health Professionals at the Grassroots Level’ organized by the Sasakawa Leprosy Initiative.

A leprosy-free world was one where “patients and those cured of leprosy live free of discrimination and, people around them will be free of the misunderstanding, ignorance and fear that perpetuate discrimination”, he told the webinar.

Sasakawa Leprosy Initiative is a strategic alliance between WHO Goodwill Ambassador for Leprosy Elimination, the Nippon Foundation and Sasakawa Health Foundation for achieving a world without leprosy and problems related to the disease. The initiative spearheaded a campaign, “Don’t Forget Leprosy”, to raise awareness about the condition in the face of the coronavirus pandemic.

The WHO Goodwill Ambassador envisions a post-COVID world where those affected by leprosy will be liberated from such stigma and discrimination in keeping with human rights.

Sasakawa says this world is now at risk of delaying leprosy elimination due to the COVID-19 pandemic, as there was a 37 percent drop in reported new cases and leprosy programs in many countries have stalled or scaled back.

Participants heard about the role of health professionals in combating leprosy, recognition of this role and the successes and challenges faced in addressing leprosy during the ongoing health pandemic.

Their role, Sasakawa said, was a central pillar to the vision of a leprosy free world as it helps reduce transmission and disability.

An estimated three to four million people live with some form of disability caused by leprosy, also known as Hansen’s disease.

“The ‘Don’t Forget Leprosy’ is a global campaign because our voices alone are not enough. Stopping leprosy requires (the involvement of) all of us, from India and Nepal to all other countries around the world,” he said.

Dr Rashmi Shukla outlined efforts in India to identify and treat patients with leprosy. She was speaking at a webinar ‘Raising Awareness about Leprosy, Role of Health Professionals at the Grassroots Level’ organized by the Sasakawa Leprosy Initiative. Credit: Joyce Chimbi/IPS

Dinesh Basnet, Central President of the International Association for Integration, Dignity and Economic Advancement (IDEA) in Nepal, said he was happy to see progress in recent years.

“More so Nepal’s efforts to track and eliminate leprosy. Even during the pandemic, detection and treatment interventions were uninterrupted, and this has been possible due to government commitment and unrelenting efforts of health professionals,” said Basnet.

“People affected by leprosy were not forgotten as communication continued through WhatsApp groups, and this was critical during the lockdown.”

Dr Indra Napit, a senior Orthopedic Surgeon at Anandaban Hospital, Nepal, spoke about innovative technology in the trial of Autologous Blood products to promote ulcer healing in Leprosy. He added that a new drug was on trial to manage reactions to this form of treatment at this leprosy mission.

In a video message, Birodh Khatiwada, Nepal’s Minister of Health and Population, spoke of Nepal’s undisrupted program to address leprosy, including the continued supply of leprosy medication despite the pandemic.

He says Nepal has already prepared the National Leprosy Roadmap, 2021-2030, National Leprosy Strategy 2021-2025, in line with the Global Leprosy Strategy, Neglected Tropical Diseases Roadmap and the Sustainable Development Goals (SDGs).

Sasakawa emphasized that it was indeed the ultimate goal for India and other affected countries worldwide to reach zero leprosy cases by 2030.

Despite challenges in the fight to eliminate leprosy, a ray of hope shines through, with Anju Sharma sharing good practices in case finding in India amid the ongoing health pandemic.

Sharma is an accredited Social Health Activist and is considered a driving force behind India’s public health system and an essential link between the community and the public health system.

“Screening for leprosy during the pandemic is much more difficult. As COVID-19 cases increase, so does my responsibilities because I have to strictly follow COVID-19 protocols, and this takes a lot of time,” Sharma explained.

“Due to the pandemic, people are hesitant about getting screened. But I reassure them that protocols will be observed and remind them that failure to detect and treat leprosy can lead to disability.”

Dr Venkata Ranganadha Rao Pemmaraju, acting team leader, WHO Global Leprosy Programme, emphasized that discussing the role of health workers was critical, and hearing from those in the frontlines helps efforts to eliminate the pandemic move forward.

WHO, he said, subscribes to the Don’t Forget Leprosy campaign. He lauded ongoing efforts to sustain counselling for those affected by leprosy and those who tracked and managed Nepal-India cross border leprosy cases despite challenges COVID-19 protocols like restrictions on movement and lockdowns.

Dinesh Basnet, a person affected by leprosy thanked health care workers and others for their efforts in eliminating the disease. He was talking at a webinar ‘Raising Awareness about Leprosy, Role of Health Professionals at the Grassroots Level’ organized by the Sasakawa Leprosy Initiative. Credit: Joyce Chimbi/IPS

Similarly, Dr Rabindra Baskota, the Leprosy Control and Disability Management Section director in Nepal’s Ministry of Health and Population, confirmed that health workers had been relentless to find new cases, raising awareness on leprosy and treating patients despite ongoing challenges.

“Still, there is a need to train community health workers to detect new cases and manage reactions to leprosy treatment even as older and more experienced health workers retire,” he said.

Dr Anil Kumar, the deputy director-general (Leprosy) in India’s Ministry of Health and Family Welfare, who spoke about good practices in combating leprosy said that a leprosy-free India was not very far off.

Despite a notable decline in screening and detecting cases due to COVID-19, he said critical interventions were nonetheless rolled out, and that leprosy-related services continued at the grassroots level.

“Migrant labourers were screened for leprosy at point of return to home districts and patients on treatment tracked. Treatment defaulters were cross notified based on the address in treatment record,” Kumar said.

“A WhatsApp group titled Leprosy Action Group was created for cross notification, and members included state leprosy officers and partners. Supportive supervision and monitoring up to sub-district level using virtual platforms continues.”

Executive Director of the Sasakawa Health Foundation, Dr Takahiro Nanri, moderated a panel discussion that included a session to further shed light on additional support needed to achieve leprosy elimination milestones.

Sasakawa suggested that health workers’ training included human rights, and the panel lauded health workers for their passionate and proactive steps to eliminate the disease.

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Yohei Sasakawa – WHO Goodwill Ambassador for Leprosy Elimination and Chairman of Nippon Foundation speaking at the 3rd of the “Don’t Forget Leprosy” webinar series organized by Sasakawa Leprosy (Hansen’s Disease) Initiative. Credit: Stella Paul

By Stella Paul
Hyderabad, Dec 3 2021 (IPS)

As 2021 nears its end, public health systems worldwide remain severely strained by COVID 19, which is showing no sign of ending. But even as countries battle to control the deadly pandemic, they must also maintain the progress made against other diseases, including leprosy, global leprosy experts and advocates have urged.

On Thursday, at a webinar organized by the Sasakawa Leprosy (Hansen’s Disease) Initiative, a strategic alliance that links the WHO Goodwill Ambassador for Leprosy Elimination, Sasakawa Health Foundation, and The Nippon Foundation for achieving a leprosy-free world, over 150 members of several leprosy-affected people’s organizations expressed their concerns about leprosy resurgence. In Comoros, in East Africa, hundreds of new cases had been detected in the smaller islands, and many of the affected are children.

“We have carried out case-finding mini-campaigns in targeted areas of Anjouan and Mohéli (islands in Comoros) with the help of community health workers and have detected new cases including in children aged 15 and above,” said Dr. Aboubacar Mzembaba, National Programme Manager, Leprosy & Tuberculosis in the Ministry of Health, Comoros.

Data shared by Mzembaba shows that in 2020, there were 217 new cases, which increased to 239 in 2021. He said about 33 percent of children are affected by leprosy, and the government aims to bring this down to 10%.

The growing number of cases among children was “a concern,” said Pemmaraju V Rao, Acting Team Leader, Global Leprosy Programme, WHO.

Rao, who also facilitated the webinar, said that since cases continued to be unreported in many regions of the world, it was essential to continue with the current strategies of detecting and managing leprosy cases, including door-to-door visits, strengthening local health facilities, regular training, and supervision of health workers.

Tesfaye Tadesse, the Managing Director of Ethiopian National Association of Persons Affected by Leprosy (ENAPAL), said the organization has been at the forefront of Ethiopia’s battle for leprosy eradication. It was also concerned with protecting the dignity and rights of leprosy-effected people.

At the webinar, Tesfaye highlighted how COVID undermined leprosy in Ethiopia even though new cases have continued to grow. Also, fear of social exclusion drove people to seek alternative cures, like faith-healing.

“This year, we have detected 21 new cases, many of them in the holy water areas of the Amhara region. People are so scared of social stigma, instead of seeking medical treatment, they are going to collect holy water for their cure,” said Tadesse.

As stigma and discrimination remain a challenge across countries and cultures, people affected by leprosy have emerged as a tight-knit community. They take the opportunity to come together at any community event and share each other’s struggles and wins. In Thursday’s webinar, the third of a series of virtual seminars in the ‘Don’t Forget Leprosy’ campaign, participants and speakers could be seen encouraging each other and sharing their thoughts freely.

When Kofi Nyarko – a leprosy-affected person from Ghana, stressed the importance of early detection and appropriate treatment without stigma for preventing disabilities in leprosy, participants from other countries were quick to express their support and cheer him on.

Yohei Sasakawa – WHO Goodwill Ambassador for Leprosy Elimination and Chairman of The Nippon Foundation responds to a question from IPS News correspondent at a webinar organized by the Sasakawa Leprosy (Hansen’s Disease) Initiative. Credit: Stella Paul

However, to win their fight in a post-pandemic era, the leprosy-affected community would need more external support as well, said Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination and Chairman of The Nippon Foundation.

According to Sasakawa, whose foundation has been instrumental in providing financial, technical, and moral support to leprosy-affected organizations worldwide, achieving a zero-leprosy world cannot be accomplished through a technocratic approach alone. A rights-based, human-centered approach that stresses full dignity and equality for the leprosy-affected community is crucial to achieving the goal.

For that, support of new allies would be vital – and Sasakawa advised the participants to seek more partners for their campaigns, including youth and media.

“The young generation is not aware of the struggle of the leprosy-affected people, especially of the older generation. We should therefore find ways to engage with them, make them aware,” Sasakawa told IPS.

“Designing educational programs is a good way to do this. Taking a human-rights approach, sharing your personal stories with the youth can help. It is also important to engage with media who can help highlight the causes.”

All the speakers and participants at the webinar agreed that the best way to achieve the aims of the “towards zero-leprosy” drive is to strengthen their campaign by increasing its global visibility.

Observation of the World Leprosy Day on January 30 presented an opportunity toward that and, the participants agreed to utilize it with renewed passion and a broader outreach plan.

“Engage with the media, utilize the radio networks in your country. COVID is there, but we must continue with our campaign,” Sasakawa advised.

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