– The human rights of people affected by leprosy are central to Yohei Sasakawa’s concept of a leprosy-free world.
Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination and President of The Nippon Foundation, was speaking at a webinar “Leprosy Awareness, Role of Local Health Professionals” hosted by the Sasakawa Leprosy Initiative.
A world without leprosy is one where “leprosy patients and those cured live without discrimination and the people around them will be free from the misunderstanding, ignorance and fear that perpetuate discrimination”, said he said during the webinar.
Sasakawa Leprosy Initiative is a strategic alliance between WHO Goodwill Ambassador for Leprosy Elimination, Nippon Foundation and Sasakawa Health Foundation to achieve a world without leprosy and disease-related problems. The initiative has spearheaded a campaign, “Don’t Forget Leprosy”, to raise awareness of the condition in the face of the coronavirus pandemic.
The WHO Goodwill Ambassador envisions a post-COVID world where people affected by leprosy are free from this stigma and discrimination with respect for human rights.
Sasakawa says this world is now at risk of delaying leprosy elimination due to the COVID-19 pandemic, as there has been a 37% drop in new reported cases and leprosy control programs in many countries have stagnated or been reduced.
Participants heard about the role of health professionals in the fight against leprosy, the recognition of this role and the successes and challenges faced in the fight against leprosy during the ongoing health pandemic.
Their role, Sasakawa said, was a central pillar of the vision of a leprosy-free world as it helps reduce transmission and disability.
An estimated three to four million people live with a form of disability caused by leprosy, also known as Hansen’s disease.
“Remember 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 every other country in the world,” he said.
Dinesh Basnet, central president of the International Association for Inclusion, Dignity and Economic Advancement (IDEA) in Nepal, said he was happy to see the progress made in recent years.
“Even more Nepal’s efforts to track and eliminate leprosy. Even during the pandemic, detection and treatment interventions have not been interrupted, and this has been possible thanks to the commitment of the government and the relentless efforts of health professionals,” said Basnet.
“People affected by leprosy were not forgotten as communication continued via WhatsApp groups, and this was essential during the lockdown.”
Dr. Indra Napit, Senior Orthopedic Surgeon at Anandaban Hospital, Nepal, spoke about innovative technology in testing autologous blood products to promote ulcer healing in leprosy. He added that a new drug was being tested to manage reactions to this form of treatment in this leprosy mission.
In a video message, Birodh Khatiwada, Nepal’s Minister of Health and Population, spoke about Nepal’s uninterrupted program to fight leprosy, including the continued supply of leprosy drugs despite the pandemic.
He said that Nepal has already prepared National Leprosy Roadmap, 2021-2030, National Leprosy Strategy 2021-2025, in line with Global Leprosy Strategy, Neglected Tropical Diseases Roadmap and the Sustainable Development Goals (SDGs).
Sasakawa stressed that it was indeed the ultimate goal for India and other affected countries in the world to reach zero leprosy cases by 2030.
Despite the challenges in the fight to eliminate leprosy, a ray of hope shines, Anju Sharma sharing good case-finding practices in India amid the ongoing health pandemic.
Sharma is an accredited social health activist and is considered a driving force in India’s public health system and a vital link between the community and the public health system.
“Leprosy screening during the pandemic is much more difficult. As COVID-19 cases increase, my responsibilities also increase as I have to strictly follow COVID-19 protocols, and it takes a long time,” Sharma explained.
“Because of the pandemic, people are reluctant to get tested. But I reassure them that the protocols will be respected and remind them that failure to detect and treat leprosy can lead to disability.
Dr Venkata Ranganadha Rao Pemmaraju, Acting Team Leader of the WHO Global Leprosy Programme, stressed that it was essential to discuss the role of health workers and that hearing from those who are on the front lines helping to advance efforts to end the pandemic.
The WHO, he said, endorses the Don’t forget leprosy campaign. He commended the ongoing efforts to support counseling for people affected by leprosy and those who have followed up and managed cross-border leprosy cases between Nepal and India despite the challenges of COVID-19 protocols such as restrictions on movement and confinements.
Similarly, Dr. Rabindra Baskota, Director of the Leprosy Control and Disability Management Section at Nepal’s Ministry of Health and Population, confirmed that health workers had been relentless in finding new cases, raising awareness to leprosy and treat patients despite persistent difficulties.
“Yet there is a need to train community health workers to detect new cases and manage leprosy treatment reactions even when older, more experienced health workers retire,” he said.
Dr Anil Kumar, Deputy Director General (Leprosy) at India’s Ministry of Health and Family Welfare, who spoke on good practices in leprosy control, said a leprosy-free India was not far away .
Despite a noticeable decline in testing and detection of cases due to COVID-19, he said essential interventions had nevertheless been rolled out and leprosy-related services were continuing at the local level.
“The migrant workers were screened for leprosy at the point of return to the districts of origin and the patients on treatment were followed up. Treatment defaulters were counter-notified based on the address on the treatment record,” Kumar said.
“A WhatsApp group titled Leprosy Action Group was established for cross-notification, and members included state leprosy control officers and partners. Supportive supervision and follow-up down to sub-district level using virtual platforms continue.
Sasakawa Health Foundation Executive Director Dr. Takahiro Nanri moderated a panel discussion that included a session aimed at shedding light on the additional support needed to achieve leprosy elimination milestones.
Sasakawa suggested that health worker training include human rights, and the panel praised health workers for their passionate and proactive measures to eliminate the disease.