By Joyce Chimbi
NAIROBI, Jun 19 2023 (IPS)
In 1974, Yohei Sasakawa accompanied his father to a leprosy hospital he had funded. He saw leprosy patients inside the hospital still and expressionless. The smell of leprosy filled the air, the smell of pus from open sores.
His father sat with the patients, touched their hands and faces, and encouraged them to be hopeful. Treatment was within reach, and they would live. At that moment, Sasakawa wondered about the life that awaited these patients outside the hospital – a difficult life of discrimination and alienation, with many ostracized from society. He silently vowed to dedicate his life to ending leprosy.
In his newly published book, Making the Impossible Possible, he chronicles face-to-face encounters with an ancient disease shrouded in many myths and misconceptions. His travels to leprosy-endemic countries as WHO’s Goodwill Ambassador for Leprosy Elimination started in 2001 and has involved over 200 trips to nearly seventy countries.
“Nearly all of my destinations have been remote locations where people live in quite desperate conditions. It has always been my belief that the place where the problems are happening is also precisely where the solutions will be found,” he says.
“I am also a firm proponent of the Neo-Confucian idea that knowledge is inseparable from practice. I want to be a man of deeds. I became involved in my international humanitarian work out of a passionate desire to be involved on the front lines until my last breath, and I am the first to admit that my work is done, in that sense, for my own personal satisfaction.”
As he retraces a remarkable journey on the frontlines of fighting the leprosy scourge, the Bergen International Conference on Hansen’s Disease by the Sasakawa Leprosy (Hansen’s Disease) Initiative and the University of Bergen in Norway will kick off on June 21, 2023, and end the following day.
The conference is a nod to February 28, 1873, when Norwegian doctor Gerhard Armauer Hansen discovered Mycobacterium leprae, the causative agent of leprosy. To commemorate the historic anniversary, the conference seeks to highlight that 150 years later, leprosy is not a disease of the past.
Leprosy still exists as a neglected tropical disease in more than 120 countries worldwide, with at least 200,000 new cases reported annually. Nevertheless, progress over the last half-century has brought the world closer to the goal of a world without leprosy.
The Bergen conference is an opportunity to draw on the knowledge, experience, and wisdom of many people at the place where Mycobacterium leprae was first observed, and to build momentum to complete the last mile in leprosy, the hardest part of the journey.
Sasakawa’s book is a treasure trove of challenges, triumphs, best practices, lessons learned, and insights into what it will take to finish the last mile in the decades-long marathon to eliminate the ancient disease.
The book is the most detailed account of Sasakawa’s quest to work for a world without leprosy and the discrimination it causes.
It is an account of his travels to remote communities around the world to hear directly from those affected by the disease, as well as his meetings with policy-makers, government leaders, and heads of state to advocate for a renewed commitment to the fight against leprosy, including measures to protect the human rights of those it affects.
“For as long as I can remember, I have made a point of repeating three messages in every meeting, conference, or press conference that I attend. The first message is that leprosy is curable. The second is that free treatment is available everywhere around the world. And the third message is that discrimination against people affected by leprosy has no place,” Sasakawa affirms.
“These messages are very easy to understand. But the third one, the message that discrimination has no place, is extremely difficult to put into practice. The habits of a lifetime and ingrained unconscious attitudes are not easily dispelled.”
Similarly, these messages will reverberate throughout the two-day conference to spread the message that today, leprosy is treatable with multidrug therapy (MDT), but if treatment is delayed, leprosy can cause progressive impairment and result in lifelong disability.
Delayed treatment and consequent disability have largely contributed to the persistent stigma surrounding the disease and the discrimination that persons affected by leprosy and their families continue to face. Discrimination is also a barrier to new case detection, discouraging people from seeking treatment.
Through sustained concerted efforts, many countries and international organizations, led by the WHO, are now aiming for zero leprosy—zero disease, zero disability, and zero discrimination.
Achieving this goal will require stakeholders to cooperate closely. To this end, the conference will bring together key leprosy stakeholders from around the world for two days of discussions focused on three pillars: medical, social, and historical.
Notable dignitaries scheduled to deliver messages at the event include Dr Tedros Adhanom Ghebreyesus, Director-General, WHO Volker Türk, United Nations High Commissioner for Human Rights, and Ingvild Kjerkol, Minister of Health and Care Services, Norway.
Keynote speakers include Professor Paul Fine of the London School of Hygiene and Tropical Medicine and Dr Alice Cruz, the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.
The conference is part of the “Don’t Forget Leprosy/Don’t Forget Hansen’s Disease” campaign launched by the Sasakawa Leprosy (Hansen’s Disease) Initiative in 2021. It follows the 2022 Global Forum of People’s Organizations on Hansen’s Disease held in Hyderabad, India, the 2023 International Symposium at the Vatican on Hansen’s Disease incorporating the Global Appeal 2023 to End Stigma and Discrimination against Persons Affected by Leprosy, and 150-anniversary events.
IPS UN Bureau Report