Conversations with Global Health Leaders: Yōhei Sasakawa- a lifelong quest to eradicate leprosy

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Mr. Sasakawa (far left) joins Dr. Plianbangchang, WHO- SE Asian Regional Director; Mr. V Narsappa, Chairman of National Forum of India; and Dr. P. Rao from WHO’s Global Leprosy Programme a press conference for the International Leprosy Summit.

As chairman of the Nippon Foundation, Japan’s largest charitable foundation, Yōhei Sasakawa is one of the most powerful men in Japan. But he does not fill his time with glamorous galas and high powered meetings. Instead, he has dedicated his life to helping those with a disease so isolating that it’s very name now metonymically stands for discrimination: leprosy.

Sasakawa’s involvement with leprosy began in childhood when his father took him to visit a leprosy hospital in South Korea. The experience was so shocking and unforgettable that he decided dedicate his life to the elimination of leprosy.

Fast forward to the present day and Sasakawa has made good on his pledge. As chairman of the Nippon Foundation, he has overseen the donation of millions of dollars to the World Health Organization (WHO) earmarked for leprosy medication (known as Multidrug Therapy or MDT) and other leprosy elimination programs.

But his involvement goes beyond signing checks. He has become the World Health Organization’s (WHO) Goodwill Ambassador for Leprosy Elimination. As such he has travelled to a staggering number of leprosy-endemic countries where he goes and speaks with real people affected by the disease. “I make every effort to go out into the field and see the situation for myself,” he said, “Sometimes I will travel for several days to visit a remote area, where I tell people directly that the leprosy is curable and that treatment is available for free.”

Nurse with leprosy patient

A nurse tends to a patient at the Leprosy Mission Hospital in New Delhi, India

He has also attacked the issue from a political angle. Despite being curable and not particularly contagious (contrary to popular lore), leprosy is still associated with a significant stigma. In an effort to ensure that those affected by leprosy live a dignified life, Sasakawa worked with the UN Commission on Human Rights (now the Human Rights Council) and pushed for the UN General Assembly to pass a resolution in 2010 to end stigma and discrimination against persons affected by leprosy and their family members.

I had the good fortune to meet Mr. Sasakawa at the Global Leprosy Program’s International Summit in Bangkok, Thailand in July. It was at this meeting that he announced that the Nippon Foundation would donate an additional 20 million dollars toward leprosy elimination.

Despite his power and prestige he was remarkably approachable. He was so humble that he insisted that we move a poster because it featured him too prominently and he felt that it detracted from the leprosy affected persons. He even listened patiently (through his translator) as I babbled about my passion for global health and asked for an interview. The following are excerpts (emphasis added):

Why should people care about leprosy—a disease which only affects a small proportion of the population globally?

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A patient with a visible (Grade 2) deformity at the Leprosy Mission Hospital in New Delhi, India.

We are still taking about some 230,000 new cases a year. Moreover..in recent years new case numbers have ceased to decline…When you think about the life of each individual in that context, then it’s a heavy number.

What’s more, the problem of discrimination continues even after they are cured of the disease, so they have to cope with that on top of any residual disability..When you consider this discrimination casts a shadow over their families, too, then we are talking about tens of millions of people affected by the disease.

Your foundation generously pledged 20 million dollars at the International Leprosy Summit. How would you like to see that money used?

Leprosy colony

Leprosy Colony in India

Compared to before most countries eliminated leprosy as a public health problem, I think the situation today is much more challenging. Leprosy tends to be concentrated in hard-to-serve areas such as urban slums, border regions and areas populated by ethnic minorities. Plus, cases are widely scattered.  It’s also a fact that governments have fewer resources to devote to leprosy. Among the health ministers I met in Geneva at the World Health Assembly in May this year where those who said that people involved in leprosy were letting their guard drop… and that it was becoming harder to get results.

So, to deal with these challenges, I would like to see the 20 million dollars used to strengthen [WHO’s] Global Leprosy Program and enhance the activities of the various stakeholders.

As the WHO’s Goodwill Ambassador, you have made extensive visits to leprosy endemic countries. What is a special memory or a poignant moment from those travels that has that has stuck with you?

One I especially remember came at the end of 2005. This was the first national assembly of people affected by leprosy in India. India contributes over half the new cases of leprosy in the world, yet there had never been an opportunity for people affected by leprosy to come together from different parts of the country…By uniting, they gain the strength to make society hear them.

In answer to my call, almost 600 people affected by leprosy gathered from all over India. Up until then, I had met many who had opted to remain silent rather than speak out for their human rights and invite further discrimination. But the people who gathered in Delhi summoned the courage to demand and end to discrimination and the restoration of their dignity  and debated the specifics of how this was to be done. I felt a big hole had been punched in the towering wall that separates them from mainstream society.

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Me and V. Narsappa- current chairman of  National Forum of India for Leprosy Affected Persons

Thanks to this national conference, a nationwide organization of people affected by leprosy called the National Forum—now National Forum India—was established. I regard its members as my brothers and sisters and we have shared many joys and sorrows dating back from before it was founded, right up to the present day.

What words of advice do you have for people that want to be involved in global health issues?

Let’s just say I would like to see many people get involved. A problem may not easily be solved, but don’t give up if you fail. You need to tackle it with strong conviction and courage. …My watchwords are “passion, perseverance and persistence.” I regard this as my life’s work, and my intention is to keep going without giving up.

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Udaipur: that time I got kicked by a horse and rageslept for 6 hours

ImageA quick weekend trips roundup. I am too proud of my weekend exploits and the pictures I took to simply spare my audience. So sorry.

First up is Udaipur- the “Venice of India.” I went with my friend and WHO colleague Adriane. It was easily one of my favorite trips that I took. The high and low lights are as follows:
The overnight train and ragesleeping. This was a cool experience. Amazing on the way there and quite restful. But on the way back we were in 3 tier AC (3 bunkbeds on each side) and 3 men got on at 11pm even though there were only 2 available seats/beds. One was a “local politician” (hint: corruption gets you anything) of the gold chain/track pants variety and the others were his minions I guess. I was on the bottom bunk and one corpulent minion just set up shop on the ground about six inches from my ear and proceeded to talk/snore/stare at me for the whole night. I had an eye mask and ear plugs but I couldn’t sleep because I was enraged. Have you ever tried to rage-sleep? I don’t recommended it. The next morning I came out of the toilet (read: hole) between train cars and the three of them were smoking there. In very broken English I ascertained that they were asking me for my “contact details.”  This provided a small opportunity to unleash my rage and snarl that I didn’t even have a phone (a lie). I think my anger was lost in translation but it felt oh so good.
Visiting a mountain fort. We ended up meeting a young Indian family and spent the day with them and their adorable 2 year old.

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Horseback riding and being oh so wrong. Adriane chickened out on this activity despite my assurances that “it won’t be scary! They will be gentle trail horses!” Famous last words. I ended up on a horse that “hadn’t been ridden much due to the monsoon.” Long story short the horse was absolutely wild and was bucking and galloping off at every opportunity. She ran right up to the guide’s horse who delivered a swift back buck- kicking me square in the knee. I was in tears and the guide (who spoke about 3 words of English and looked about 14) clearly was horrified and had no idea what to do. I left with a massive bruise (on my knee and on my ego…recall that I was on the equestrian team in college) and proceeded to limp around the city like a drunk, uncoordinated pirate with a pegleg. Would I do it again? You betcha.
The view from the hotel. Our budget hotel had an amazing lake view from it’s rooftop restaurant.

ImagePlaying tag outside a Jain Temple. Asked two girls where the bathroom was and ended up playing an elaborate game of tag with her whole extended family. Welcome to India.

IMG_5183Visit to the spice market: color explosion in my brain. Ended up having chai with one of the spice vendors and then wandered around for a bit.IMG_4629

Letters

Dear girls on the metro,

I am aware that I’m white. And that there are no other white people on this metro. And I know I’m pretty darn good looking. But seriously, this is New Delhi- I’m sure you’ve seen other white people. Do I really merit a sneaky cell phone video? I mean, staring and/or smiling/giggling- not an issue. A picture…sure. “Look at this white girl on the metro! She is really tall! And pale like a sickly ghost!” But a video? I wasn’t even doing anything except reading. And did you really think that I couldn’t see? This is 2013 ladies- everyone knows a sneaky cell phone pic when they see one. And the lady behind you was watching your footage over your shoulder and grinning up at me. A budding Ken Burns I suppose.

Hope you liked my purposeful wink at the end. And I really hope that in India a wink isn’t construed as some kind of insulting gesture implying that I wanted to defile your mother or something. On second thought, maybe I shouldn’t have winked?

See you next time girls. We both know I’m not mad. I already signed over my privacy when I opened a facebook account. So thanks for making me feel like Brangelina for the day.

Best,

Tired white girl on the metro

Photoshoot in Old Delhi

IMG_6131 IMG_6166 IMG_6172   IMG_6209 IMG_6213  IMG_6178 IMG_6197I was out and about in the winding lanes Old Delhi doing a photo shoot for the WHO- trying to get pictures for lead and chemical safety at a wholesale market which sells any type of chemical you can think of (although, to be fair, I can’t think of that many chemicals- chemistry was  my weakest pre-medical subject). It was a fascinating visit to a this Muslim part of town that doesn’t get too many foreigners because chemical market is not usually in the Lonely Planet guidebook.

From a professional standpoint, however, it was pretty difficult. No one wanted me to take their photo. This was strange because people in India have been amazingly generous about allowing me to take their photos, especially when asked in my special brand of Hindi/English/charades (Hinglrades?). In fact, some people are downright insistent that I take their photo even when I don’t especially need or want to. I will almost always oblige (yay digitial cameras) unless it’s a particularly insistent group of young men because you never engage with a manpack.

For example, earlier I was trying to get a shot of an old man drinking from a watertap. But by the time I had communicated my request he’d stopped drinking. A young man nearby saw me ask and eagerly jumped in to pose for me. Errrr, OK. Seeing this, the old man subsequently pushed him out of the way and started to drink again, even moving his hand to give me a better angle. Another young man attempted to elbow his way into the scene for a moment of glory but by that time I’d thanked everyone involved and moved on. Phew.

Back to the chemical market: no one wanted their photo. My companion from a local chemical safety NGO asked why and it had something to do with terrorism investigations and the police (like they thought we were the government shaking them down I guess). Not entirely sure but I managed to snap a few shots that should do the trick.

The funniest moment for the daywas when we were grabbing a bite to eat and I was washing my hands at the sink in the middle of the dining area (common here). I reached for what I thought was a bottle of soap until I heard some kerfuffle, and my Indian companion came hustling over: “no, no! That is toxic floor cleaner!” I looked over and the cooks were shaking their heads like “stupid foreigners.” To be fair, it was in a bottle right next to the sink and it looked just like liquid handsoap. It was like a sanitation boobytrap.Is there any end to the mistakes I can make in India? Love it anyway.

Playing Dress Up: Sari I’m not sorry

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I work in an office with 3 other women. Every morning they come in wearing the most beautiful kurtis and saris and we all oooh and ahhh accordingly. I have taken to calling it the “morning runway.” I, of course, mostly end up looking like a hobo. One of the administrative assistants, Madhu-ji (ji is a term of respect), was reImagetiring after more than 20 years of service. A retirement party was held in the office followed by a party near her home. One of my other coworkers brought in a sari for me to wear and they all dressed me up like Barbie with a matching eyeliner and bindi (dot between the eyes that historically meant that you were married but is currently a fashion statement also embraced by younger, unmarried Indian women). Let me tell you, a sari is a difficult thing to wear- it consists of a very short sleeved blouse and then a single piece of fabric wrapped, pleated and pinned in a regionally specific manner.

I, of course, loved it. In a ground-breaking first, I was told that people were talking about how “elegantly” I carried the sari (!) especially combined with holding my coworker’s adorable 6 month old. I perhaps broke that spell when I hiked up the sari to try to go down the stairs- a move that earned me a look of shock “no NO! Don’t do that!” You would have thought that I had try to disrobe completely. In fact, this particular misdeed was recounted to others who laughed at how utterly gauche this was. Quelle horreur!

The evening’s retirement party was also great. Half the fun was getting therae- I got to hold the baby the entire car ride (car seats aren’t a thing here as far as I an tell). When we finally arrived at the Punjabi Association after an hour of traffic there were delicious trays of food, fabulous Bollywood music and I managed to keep the baby in my arms the whole time. We even hit the dance floor together. I think that managing a sari, a baby and Indian dance moves is amongst my most coordinated moments (which are few and far between).

Independence Day!

On this day, in 1947, India achieved independence from Britain after a remarkably non-violent movement led by thought leaders including, famously, Gandhi.

We had a small celebration at work on Tuesday with traditional songs and yummy Indian snacks. In fact, the South East Asian Regional WHO office celebrates national days for all 11 member states because there are staff members for all countries. But our office is in New Delhi and thus there are lots of Indian staff members so today is particularly special and we all get the day off.

And me? I celebrated Indian independence at the American embassy (hah!). This was mostly because there was a security risk throughout most of New Delhi based on terror threats. Therefore, I tried to avoid any crowded areas such as the Red Fort where the prime minister hoists the flag and gives a speech. Instead, I enjoyed my day swimming in the pool with my boss 8 year old and eating tricolored Indian pastries. Of note: I am an equal opportunity celebrator, I celebrated American Independence Day by wearing red, white and blue and eating watermelon with a fellow American colleague- a tradition that baffled our Japanese friend.

But today I was feeling quite patriotic about India. It was one of those days where you just feel happy to be alive. And boy do I have a lot to be thankful about. Everything was cooperating: the autorickshaw drivers agreed to use the meter, the weather was comparatively mild, I got to practice some Hindi, the food was good, and I got to be part of a great family for the day. Tomorrow off to the sacred Ganges for the weekend. I’m already feeling sad about the fact that I only have a mere couple weeks left here.

Happy Independence Day, India!