Sasakawa-India Leprosy Foundation’s new CEO is a strong believer in partnerships.
You have joined amid a pandemic. How is S-ILF responding to COVID-19?
S-ILF has been able to promptly respond to the initial phases of the pandemic through ensuring basic supplies of food and hygiene products to leprosy colonies. Through our strong relations with the Association of People Affected by Leprosy (APAL), committed staff and generous donors, we have been able to reach more than 6,000 households. These are unprecedented times. We are wary that they threaten to further neglect colony residents and we plan to undertake a rapid survey with APAL to understand how COVID-19 has impacted their livelihood, health and the education of their children. This knowledge will enable us to respond better through reprogramming of our support and advocacy.
As the new CEO, what do you see as S-ILF’s priorities?
Medical and social responses in leprosy are intertwined—one without the other would renderour efforts futile. This is brought out through the analogy of the two wheels of a motorcycle as described by Mr. Sasakawa. Enabling resilience through sustainable livelihood approaches,building capacities through skilling and continued educational opportunities will be our priorities. People affected by leprosy and their families deserve equal opportunities in an inclusive world.
What lessons or experiences from your career to date will you be drawing on in your role?
The success of public health programs is determined through the active participation and ownership of the beneficiaries. It is vital, therefore, to remain connected to the beneficiaries and build in flexibility in our approaches. I am a strong believer in partnerships and that public health goals cannot be achieved in isolation. S-ILF can help play a complementary role to the efforts of government and other organizations working in the field of leprosy, and as CEO I have a sense of urgency to seek these relationships.
From your perspective, what are the main challenges India faces regarding leprosy?
India holds the key to globally alter the face of leprosy, and thus our greater responsibility. At a community level, myths and stigma regarding leprosy are still rife. Much of the success in the leprosy program is born out of timely detection of cases; demystifying the disease for the general community is therefore of paramount importance. Keeping expertise in leprosy alive through the involvement of the next generation is vital and programming in leprosy must be holistic, addressing both medical and social aspects of concern to the affected person. The latter could be achieved through continued active engagements with persons affected by leprosy. At the advocacy level, we need to underscore that the disease still occurs—that elimination as a public health problem must not be misconstrued as eradication of the disease.
S-ILF works closely with APAL. How important is that relationship?
APAL is the representation of the needs and aspirations of persons affected by leprosy. S-ILF’s work is a response, ultimately aimed at restoring dignity in their lives. To me, this relationship is as intricate and integral as one of a sense organ and the brain—one beautifully complementing the other!
If somebody asks why leprosy matters, how do you respond?
It matters because even 150 years after its discovery as an infectious disease, leprosy remains elusive; there are still more than 200,000 new cases detected worldwide every year. It is one of those very rare diseases wherein for the optimal ‘treatment,’ the community’s response and a medical cure are equally important—a community without stigma and discrimination must go hand in hand with multidrug therapy. Until we find solutions to the problems that persons affected by leprosy face, including the stigma and discrimination that have no place in an advanced, humane society, our pursuit of universal health coverage and the goal of ‘no one left behind’ will go unfulfilled.
Are you an optimist, a pessimist or a realist?
Definitely not a pessimist. Whilst being a realist allows me to look for solutions to deal with existing problems and challenges, it is the optimist in me that drives my work. In this pandemic, our efforts will need to be magnified several-fold. Only through great passion fueled by a strong sense of optimism can we realize our goals.
Dr. Vivek Lal is CEO of Sasakawa-India Leprosy Foundation (S-ILF). Prior to joining S-ILF in June 2020, he served as director of health for the German Leprosy & TB Relief Association in Kolkata.