Journalism roundup

IMG_8285It’s been strange to be out of the clinical world for this long. Sometimes I find myself striving to remember the name of a disease or drug that would have been second nature to me last year. On the other hand, it’s been great to look at medicine from the outside in – it’s given me a perspective that is hard to achieve when you are mired in the thick of it.

Here are some pieces that I’ve recently published. Any thoughts, suggestions and comments are welcome!

  1. Flu shot story + podcast/slideshow
  2. An opinion column on the Affordable Care Act (aka “Obamacare”) and medical students
  3. Cost containment in dermatology. I got to interview the president of the American Academy of Dermatology! 
  4. Local forum on the Affordable Care Act
  5. Superheros at the children’s hospital!

In case you missed them: there are also a few pieces that I published while in IndiaIMG_4202

  1. Living with leprosy
  2. Unhealthy eating in college campuses
  3. Leprosy in the modern world
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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.”

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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.

Learning to tell their stories: visit to a leprosy colony

ImageIn addition to my work at the WHO I have been trying to hone my journalistic skills. At this point, that means doing what I do best: talk with people. Rickshaw drivers, my colleagues, fellow train passengers, chai wallahs, doctors…anyone and everyone. I spent an entire 2 hour car ride this weekend discussing bribes and corruption in the healthcare system with our driver. Today I stopped someone for directions…and spent 15 minutes talking about healthy eating choices at universities. It’s great. Instead of just being a really friendly chatterbox I can now blame my verboseness on “journalism.”

In service of this, I headed out on assignment last week. I’m going to be writing a few stories for an Indian newspaper called The Hindu. My first article? Leprosy of course. I almost laughed when they told me- I feel like I’m finding a niche. In search of a new angle I met up with Meeta, a photographer for the paper who served as my translator, and the two of us went to a nearby leprosy colony. (note: because leprosy is fully curable with antibiotics, people who live in these colonies are usually persons who had the disease in the past- and may have suffered consequent deformities- and their families.)

We walked from home to home and finally found someone who spoke Hindi (as opposed to a more regional dialect). I don’t want to spoil my story but we found an incredibly kind, interesting, articulate gentleman. He welcomed us into his home and spoke with me for more than an hour. I was captivated. During the interview a rat crawled over his wife, it was hot, and I was tired from a full day at work beforehand. But I could have stayed there all day. I was struck by his story and his quiet insistence that leprosy-affected persons deserved the dignity of work, no matter how humble the job.

IMG_4275While Meeta set up her photos I was led around the colony by an impromptu volunteer tour guide- an older gentleman who spoke no English but insisted on taking me to every dwelling and had me take pictures of everyone, young and old. When he wanted to get my attention he would call my “name”…”eeeleee” and (Hayley is hard to pronounce in Hindi) and off we would go. When the “tour” was over he brought me to his home/small shop, insisted on giving me tea and a coke and refused any and all forms of payment. Remember: I was a complete stranger, coming into their community, asking them deeply personal questions and offering nothing in return. I couldn’t even communicate without my translator, relying instead on the universal currency of pointing, gestures and smiles.

By now I should be used to this amazing generosity. During the International Leprosy Summit in Thailand I met Mr. V Narsappa, the chairman of a national advocacy group for leprosy affected persons.  He was diagnosed with leprosy at age 9 and was kicked out of his house at that time. He too spent hours talking with me about his experiences. At the end he asked only one thing of me: “write something that will help people affected by leprosy.” His injunction is one that I take seriously and it reminds me that be it medicine, journalism or public health…with great privilege comes great responsibility.

The generosity of my impromptu tour guide, the gentleman I interviewed, the leprosy patients I met at the hospital last month is so intense and humbling. They make me want to be a better person- more generous, more optimistic, more hospitable. In the meantime, however, I will just try to take advantage of this incredible fellowship so I can learn to tell their stories.

Travels in Thailand Part 1

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I can’t believe how derelict I’ve been in chronicling some of my adventures. I went to Bangkok for a week for a conference  and took 2 days after to explore. It was one of my all time favorite trips but it will be too boring to describe in detail so I will give you the highlight reel: 

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1. International Leprosy Summit/photojournalism.  I went to help with the International Leprosy Summit. My not-so-secret dermatology nerd was immensley pleased to marry my twin passions of derm/infectious disease with global and public health. The meeting was a great success and I was so excited to see that a photo I took was used on a giant poster that will also be distributed internationally and was used in international newspapers!

2. Bangkok/street food: I stayed in a budget hotel right next to one of Bangkok’s night markets, Patpong,  in an area called Silom which boasts some delectable street food. I am not a foodie by any means (my “cooking” is more along the lines of eating raw veggies and trader joe’s frozen dinners with the occasional sauteed spinach or brussel sprout/stir fry/kale chip thrown in) but WOW the food in Thailand was good. 

Street food in Thailand is safe, hygienic, delicious and very cheap so I availed myself of every opportunity. Some favorites: the fresh fruit, lod chong, sum tum and BBQ street meat. I had a fabulous experience near one of the temples where a som tum vendor took a shine to me (I had tried to entice some other tourists into trying her amazing dish) and gave me all sorts of free food.

 

Image3. The joy (?) of being a solo traveler. I was hell bent on taking advantage of this work trip and seeing a bit of Thailand. Problem? I didn’t have anyone to sightsee with as my boss was ill and the rest of the people at the meeting were honorable ministers of health etc. Solution? Strike out on my own! One thing I am amazed by is power of the internet (please read that sentence a if it were said by the people in this video …”what is internet?”).  I used TripAdvisor and other message boards to figure out the best (read: cheapest) hotel to stay at, where to change money for the best rate, how to navigate Thailand’s public transportation and which attractions were a must see. To get to the temples, for example, I had to take the skytrain to a river port and hop a local public boat bus and figure out which station to get off on. The bonus about traveling alone is that you meet all sorts of amazing people and in my experience people were kind, generous and eager to help. The best part was when I asked directions from 2 women, one Thai and one American. “I’m from Bangkok but I live in the US now- we both do,” the Thai woman explained. “Where in the US?” I asked. “Boston,” she replied. “No way! I grew up in Boston!” I exclaimed. “Well, not really Boston, we live in a small town outside of Boston called [she named the exact small town outside Boston where I grew up].” “ME TOO!!!” Seriously, what are the odds? Gotta love it. 

 

Leprosy Mission Hospital

ImageYesterday I had the opportunity to spend the day at the Leprosy Mission Hospital. It was my favorite day thus far in Delhi. I spent time talking with the patients, hearing their opinions on some educational materials as well as learning aImagebout their stories. 

One man told me that he was depressed. He worked as a rickshaw puller and he was beginning to feel numbness in his hands (since leprosy affects the nerves of the hands, it can lead to lack of sensation and inability to use the hands) so was worried about the future of his family. He hoped to become a vegetable seller but wasn’t sure how to accomplish this. He only offered this information when I asked him specifically. He wasn’t asking for money, or assistance- just giving voice to the 

anxieties that clearly haunted him. As for me, I felt that horrible impuissance of feeling like nothing more than an observer of his pain- able only to listen. 

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Helping me set up a tripod

Although it was hard to hear stories like that, I left feeling uplifted and humbled by the visit. To say that the patients were amazing is a huge understatement. At one point I was trying to construct an improvised tripod to shoot some video and all the patients were

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 helping me- even  one who had no use of his legs. Truly incredible. 

I took care to explain the reason for myphotographs (educational materials) and I asked the patients through a Hindi translator if they had any questions for me. They wanted to know my job, my age and where my family was from but, the translator explained, “they also want to let you know that they are thankful to you for taking the time to come here and take photos and listen to them.” Yes, they were thanking me- a random, probably intrusive visitor. It took me back to the feeling I have many times during medical school (I think I did the best job of voicing it here)– floored and honored by how incredibly generous people can be even when they are suffering.

A few thoughts about leprosy


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Although some may think of leprosy as an antiquated or even medieval disease, it is still a huge problem in several countries and leads to significant morbidity and mortality. Although “global eradication” was achieved in 2000 which means that across the world there is less than 1 case per 10,000 people but that figure may be misleading as it takes into account countries where there are zero cases of leprosy. In 2011, for example,  219,075 cases were reported- most in areas of high endemicity- especially in Africa and South Eastern Asia. 

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Plaster of paris prosthetic legs for leprosy patients

For those who don’t know- leprosy is a chronic disease caused by Mycobacterium leprae (a mycobacteria is a kind of bacteria). The disease affects the skin, nerves (especially the peripheral nerves- nerves that go to places like hands and feet) as well as the lining of the upper respiratory tract and the eyes. It is spread through respiratory droplets (from the nose and mouth) via prolonged and frequent contact–it is NOT highly contagious.

What most people don’t know about leprosy is that is it completely curable with multidrug therapy (MDT). This treatment is completely free to all patients across the world. However, without treatment or even despite treatment, many patients suffer irreversible damage to their skin, nerves and eyes– leading to disfigurement, muscle wasting, paralysis and blindness. Additionally, there is still significant stigma for patients which leads to psychological distress, marginalization and discrimination.