Born in Tokyo, YOHEI SASAKAWAis the WHO Goodwill Ambassador for Leprosy Elimination and Chairman of The Nippon Foundation, a non-profit foundation established in 1962 for carrying out philanthropic activities using revenue from motorboat racing.
Sasakawa is known for bringing an entrepreneurial spirit to his work with entities from the political, governmental, academic, and private sectors in addressing issues in such diverse areas like health, education, food security, and maritime safety.
His global fight against leprosy and its accompanying stigma and social discrimination is an issue to which he has remained highly committed for more than 40 years. In an interview with ASHOK TUTEJA, Sasakawa shares his thoughts on various issues ranging from leprosy to the Covid-19 pandemic.
Excerpts:
Q. You are the Goodwill Ambassador of the World Health Organization (WHO) for leprosy elimination.How do you look at India’s efforts to eradicate leprosy?
A. The Indian government is making great efforts to tackle leprosy. Early detection and treatment are of the utmost importance to preventing transmission and the government’s national leprosy case detection campaigns (LCDC) in recent years have been very successful in helping more people to access treatment.
Moreover, the proportion of new patients with visible (grade-2) disability at time of diagnosis has almost halved in the past five years, which is unprecedented when compared to other countries. However, it remains the case that more than half the world’s new leprosy patients are diagnosed in India, and there exist laws that discriminate on the grounds of leprosy that need to be rescinded.
So, there is still work to do, and I would like to see the Government of India continue its efforts to tackle leprosy from both the medical and social standpoints.
Q. Can you throw light on cooperation between Nippon Foundation and Sasakawa India Leprosy Foundation to deal with this infectious disease?
A. Sasakawa-India Leprosy Foundation (S-ILF) was established by The Nippon Foundation in 2005 to support India’s efforts to tackle leprosy with endowments totaling US$ 12,000,000 to date. Around the same time, we also helped to found what is now called the Association of People Affected by Leprosy (APAL), a nationwide organisation working to resolve leprosy issues whose efforts I support.
In cooperation with APAL, S-ILF is engaged in projects to promote selfreliance, education and awarenessraising projects, mainly in highendemic states, and undertakes activities that contribute to improving the lives of those living in leprosy colonies while also promoting social integration.
So, for the Nippon Foundation, S-ILF and APAL are important partners and we will continue to support them. We would also like to continue to cooperate with the Ministry of Health and Family Welfare concerning our activities.
Q. What are the challenges being faced in the eradication of leprosy the world over?
A. From the 1980s, a new treatment for leprosy in the form of multidrug therapy was gradually introduced around the world and the number of patients began to decrease sharply. In 1991, the WHO set a goal of eliminating leprosy as a public health problem, with elimination defined as a prevalence rate of less than 1 case per 10,000 population, and this galvanised countries to tackle the disease.
Unfortunately, now that most countries have achieved this, leprosy has become less of a priority and case numbers have plateaued. My view of this is that once a country achieves the elimination target, people involved worry that numbers will rise again if they keep looking for new cases, and they will be criticised, so they suffer from what I call “elimination trauma”.
There is also a problem of stigma and discrimination associated with leprosy. Because of lack of knowledge and understanding about leprosy in society, persons affected by leprosy find themselves economically and socially marginalised. Another consequence of discrimination is that people hesitate to seek treatment even if they think they might have symptoms, with the result that they may be transmitting the disease to others.
Social awareness is so important. Everyone needs to know that leprosy is curable, the drugs are free, and that discrimination is a human rights issue and should never be tolerated.
Q. Tell us more about the launch of the flip chart to help ASHA workers in India do their job better with regards to identification of leprosy cases and promotion of treatmentseeking behaviour amongst infected people?
A. Early symptoms of leprosy are often painless, so many people do not go to hospitals or health centres to be examined. By visiting people’s homes and examining them for signs of leprosy, ASHA are making a big contribution to early detection.
We collaborated with the Ministry of Health & Family Welfare and the WHO to develop a leprosy flip chart to help ASHA communicate correct knowledge of leprosy to households. By 2022, the flip chart will have been distributed to ASHA in six endemic states: Gujarat, Chhattisgarh, Bihar, Orissa, West Bengal and Jharkhand. When we distributed the flip chart to ASHA last year in Gujarat, they told us it would be very helpful.
The flip chart uses a lot of drawings and photos and is designed in a way that anyone can understand. In addition, the WHO has produced an explanatory video on how to use the flip chart, so even if ASHA can’t attend training sessions because of the coronavirus pandemic, they can watch the video and learn. We are hopeful that the flip chart will prove effective and lead to as many cases as possible being detected early.
Q. Could you tell us about the work done by S-ILF during the Covidinduced lockdown to provide relief to leprosy-affected people in India?
A. The worldwide outbreak of the Covid-19 pandemic unleashed an unprecedented crisis. This has badly impacted the leprosy-affected people living in secluded leprosy colonies. They were left with no means of livelihood. In these times of uncertainty, S-ILF ensured that the relief measures trickled down to those who needed it the most. S-ILF initiated a campaign to provide dry ration & relief material to the persons living in these secluded leprosy colonies.
Till date, S-ILF is able to extend support to more than 35,000 people (7,831 households) in 11 states across India. We always have, and always will be committed to supporting and empowering persons affected by leprosy and their families.
Q. How do people living in leprosy colonies fight against Covid-19,and how do you look at it?
A. In addition to working with SILF, The Nippon Foundation of which I am chairman and the Sasakawa Health Foundation have supported the APAL since its founding in 2005. APAL is a nationwide network representing the interests of some 750 leprosy colonies across India and advocates with the central and state governments for the rights of persons affected by leprosy and to improve their quality of life.
While India has eliminated leprosy as a public health problem, it continues to see the highest number of leprosy cases in the world while also reporting the second-highest number of Covid-19 cases. Concerning the latter, many people have suffered tremendously over the past year as a result of lockdowns.
This is particularly true of leprosy colony residents, who were already in an economically and socially vulnerable position. I have heard reports from around the country of people losing their livelihoods, having trouble finding something to eat, being unable to receive needed health care and suffering a worsening of the aftereffects of leprosy.
Faced with this challenge, APAL has begun a new grassroots coronavirus relief initiative in 25 colonies in 6 endemic states: Madhya Pradesh, Maharashtra, Telangana, Andhra Pradesh, Jharkhand and Gujarat. Young people in the colonies are being taught about the coronavirus and how to protect against it, such as the correct way to wear a mask, and trained how to take temperatures and measure oxygen saturation levels of colony residents, and take them to the hospital if they develop symptoms.
From its beginnings, APAL and its members have been actively involved in a sustained effort to detect new cases of leprosy and I have been supporting these activities. They are now able to apply this experience to the coronavirus as well. I think what this new initiative by APAL shows us is that people are conscious of protecting their health and are trying to overcome the coronavirus pandemic by helping each other.
My hope is that these activities not only help protect the health of colony residents but become a model for the whole country in protecting against both leprosy and coronavirus alike.