Japan

Fire and Fury… Never again*

In 2007 I was honored to be invited to Hiroshima, Japan, by Novo Nordisk to speak at a meeting of Japanese hematologists, and later a group of hemophilia patients and families. While in Japan, I was able to visit the A-Bomb Dome, ground zero where the atomic bomb was dropped. I’m a huge history buff, and read voraciously about history of all types, and try to visit as many historical places in the world as I can. Of special interest is World War II. I wondered how many
Americans even remembered the dates when “Fat Man” and “Little Boy” were dropped?

We should. I was thinking of Japan and my visit last week, mainly because it is the anniversary of the bombing of Hiroshima (August 6, 1945) and three days later, Nagasaki (August 9, 2017). Also because for some reason, my visit to Hiroshima is one of the highest hit pages on my blog, consistently every year. I reflected on my memorable trip, and what I saw at the museum in Hiroshima. I planned on running a return visit by reposting my blog, when national events suddenly made it more urgent that I do.

(See photos of Laurie’s trip here)

Last week, in between those two infamous dates, President Trump chose to use threatening (yet characteristically vague) rhetoric toward North Korea. Everyone since has been whispering and worrying about nuclear war. Guam is now preparing its inhabitants for a pre-emptive strike. In 2007 I wrote: “Yesterday in Hiroshima, before I gave my presentation, I had time to slip out to the Peace Museum. This expansive, eerily quiet edifice preserves the memory of those killed on August 6, 1945, when the first atomic bomb was used. Inside, Yuko and I read in hushed silence what life was like in Hiroshima the morning the bomb fell, and the devastation that followed. The museum has recovered the actual clothing of some of the children who died in the attack, and most notably several watches, with hands frozen at 8:15 am, when the bomb struck. It was hard to sit through the 30 minute opening film without tears filling our eyes, viewing how the victims suffered. Hiroshima has since become the epicenter of a world peace movement, and every mayor since 1968 has written to world leaders whenever a nuclear weapon is tested, urging them to stop the spread of nuclear weapons. The photo above shows the A-Bomb Dome, now a World Heritage site, which is all that remains of a building near the hypocenter of the blast. It was also about the only thing left standing in the city.”

The atomic bomb killed 140,000 people in Hiroshima. The bombing of Nagasaki three days later killed 70,000 more. Japan surrendered days later, effectively ending World War II.

“Nuclear weapons are incompatible with mankind,” said Yoshitoshi Fukahori, an 88-year-old survivor of the Nagasaki bombing who lost his sister in the blast. He said that as he rushed home the morning after the bombing, the shocking view
from the hilltop — his hometown flattened and the landmark Catholic church on fire — made him cry. (LA Times, August 9, 2017)

Since the nuclear destruction of their cities, Japan has become one of the most peaceful nations on earth. The entire Japanese culture is based on respect, desire for peace, and abhorrence of nuclear weapons. Careless throwing around of vague threats sets the entire world on edge. I went to Japan to speak about hemophilia, but came home with renewed respect of how Japan suffered, how it changed their national identity, and with amazement at the peaceful culture.
Let’s hope and pray we do not have to suffer such extremes to learn what peace is and means. 

(See photos of Laurie’s trip here)

If you know little about the events of World War II that led to the bombings, or know little about the bombings themselves, please read about them. Learn. Study. We learn from the past, to create a better future. And to guide our world leaders, who I fear have not studied about Hiroshima… or learned from it.

* Never again. Plus jamais. Words inscribed at Dachau, a German concentration camp.

 Recommended: the movie Fat Man and Little Boy, starring Paul Newman

Great Book You Must Read

Hiroshima by John Hersey. This book, which I read just in time to honor the 49th anniversary of the August 6 bombing of Hiroshima, is one of those absolutely rare gems: short, full of prose and
thoughtfulness, and leaving a lasting impression. You can read this book in one evening, and probably will because it’s hard to put down. Simply told, powerfully effective and unforgettable. A classic. Five stars.

 

 

 

 

Taking Japan to the Next Level


Yuko and I flew into a rainy Tokyo Sunday morning and dashed directly to meet with a group of about 50 patients and family members. I presented the US system of healthcare for hemophilia, including comprehensive care, product choice and the homecare system. Japan has a decentralized healthcare system for hemophilia: there are over 1,000 clinics and hospitals serving 4,000 patients, spread out over the island. Some of these have some components of comprehensive care, while lacking others. It’s not complete comprehensive care the way we know it. A center might have a hematology ward, a physiotherapist, a surgeon, but not a dentist affiliated with the center, nor a psychologist or social worker. There is no home delivery of factor: patients must go to a pharmacy to retrieve it, and are limited in how many vials at a time they can bring home. The national organization is also decentralized, and has numerous chapters. I wondered at their level of communication, however, when I learned that the hemophilia society does not have a national newsletter. This was very surprising: how do you learn about hemophilia? I asked. How do you know what is happening with your national society? With the world organizations? With breaking medical news about hemophilia? No one could really say.

One young man with hemophilia, who happens to be a hematologist, offered an explanation. After the prolonged and heartbreaking fight to win compensation and justice from the Japanese government for the AIDS scandal, families were weary, broken. They went home and stayed home, recuperating emotionally, not asking for things like comprehensive care or a newsletter. Progress on the national hemophilia society plateaued. He then passionately added he thought it was time patients start becoming active again and set goals for their society.

I reflected that Japan is one of the most industrialized nations on earth: I asked the audience, why not think about complete comprehensive centers? A national newsletter? Some books on hemophilia? Maybe even homecare delivery? These were questions that prompted discussions and nodding heads.

The mood of the audience seemed lifted and inspired: I think they want to start meeting again as families, sharing stories, and reassessing their priorities. Home delivery seemed high on the list! This would be a breakthrough for hemophilia care.

Before I left the families, I happily met Hitoshi Kawano, father of a man with hemophilia, and Shinji Abe, whose young son Taiga has hemophilia. Both fathers had contacted me years before, and we had shipped books to them. I had stayed in regular contact with Hitoshi and his wife Yuko. Hitoshi and Yuko had translated my book “Joshua” and printed it in color; it is the only book in Japanese about hemohilia for children. He is also planning to have the other two books in the series printed and available. We were so happy to meet in person!

On Monday Yuko and I had a little time off before I headed to the airport. She took me to Tsukiji, the world’s largest fish market, where millions of fish were laid out for selection: red snapper, grouper, eel, crab, squid, scallops, sardines, and tons of tuna! All of it fresh, odorless, glistening under the lights. (Did I forget to mention that I ate raw octopus? It was… different!) Next we paid our respects at a Shinto shrine, to see the colorful lamplights, prayer paddles, and various plaques on which there were prayers to the fish who gave their lives for us. Our last visit was through Thunder Gate to Sensoji, the oldest Buddhist temple in Tokyo, which was beautiful. By then a downpour threatened to ruin our cameras and gift bags so we hightailed it to the airport, after a final delicious Japanese meal. The food in Japan is out of this world, in flavor, presentation and health value.

Japan is a gorgeous country, clean, efficient, with polite, intelligent, gracious people. It has a fascinating history, and good health care. But I sense that it could even do more to improve its hemophilia care, given its vast resources. Recent and reliable data show that Japanese patients wait on average 12 hours after the onset of a bleed to infuse–and this is much too late. Patient groups are splintered. National unity among patients, and the patients’ own empowerment level seems weak. At least one young leader seems motivated now to address these issues.

Thanks to Novo Nordisk for sponsoring this trip, for allowing me to share our system of hemophilia healthcare with audiences of both Japanese doctors and nurses, and patients. This is the way all countries grow and learn, from each other. Sayonara!

Hiroshima: Center of Peace

Tomorrow I fly home and conclude a wonderful trip to Japan. Yesterday in Hiroshima, before I gave my presentation, I had time to slip out to the Peace Museum. This expansive, eerily quiet edifice preserves the memory of those killed on August 6, 1945, when the first atomic bomb was used. Inside, Yuko and I read in hushed silence what life was like in Hiroshima the morning the bomb fell, and the devastation that followed. The museum has recovered the actual clothing of some of the children who died in the attack, and most notably several watches, with hands frozen at 8:15 am, when the bomb struck. It was hard to sit through the 30 minute opening film without tears filling our eyes, viewing how the victims suffered. Hiroshima has since become the epicenter of a world peace movement, and every mayor since 1968 has written to world leaders whenever a nuclear weapon is tested, urging them to stop the spread of nuclear weapons. The photo above shows the A-Bomb Dome, now a World Heritage site, which is all that remains of a building near the hypocenter of the blast. It was also about the only thing left standing in the city.

Later, I presented to an audience of 123 hematologists and nurses what hemophilia is like in the US, and how patient involvement and early intervention can make life with hemophilia more normal. Doctors are highly revered in Japan, and ironically this can make patients/parents both comforted and complacent, leaning too much on their medical team’s expert advice.

With any chronic disorder, patients and parents must take charge of their own daily life and future. The role of homecare companies was a new one to the doctors and nurses, and at the reception that followed, we discussed how this has improved medical care on the US. Currently Japanese families are prescribed factor through their physician and pick it up at a local pharmacy. It was stimulating to speak to such a high-powered audience, and though role playing was on the agenda for the evening (where doctors would switch professional roles with me or their nurses and enact some real-life scenarios to see how they react), we simply ran out of time. I heard more than a few “whews!” in the audience!

(Photos: A-Bomb Dome; Hiroshima on August 6, 1945; Laurie with Japanese hematologists; Laurie with her hosts, Novo Nordisk Japan)

Konichiwa!


I am writing from the beautiful and historic city of Hiroshima, Japan, where I’ll give a presentation on hemophilia tomorrow. In the last 24 hours I have been on a plane, train, taxi and boat!

I arrived in Osaka, Japan yesterday at 5 pm local time, after 19 hours in transit. After being greeted warmly by my guide, Yuko, we both set off to the hotel for the evening. This morning we caught the “Bullet Train,” the official name for the Japanese railways, dubbed the fastest on earth, for an incredibly smooth and delightful 90 minute ride to Hiroshima. Hiroshima is picturesque, lush and sparkling clean, nestled in the hilly landscape that hugs the Seto Inland Sea.

Today was my free day, so Yuko and I decided to visit the island of Itsukushima, or more familiarly “Miyajima,” which means “Shrine Island.” We hopped on a ferry and in 15 minutes landed on this holy island just as the sun finally broke through the clouds. Our first photos were with the numerous deer that populate the island, and which are very friendly; too friendly. While I posed with the deer, waiting for Yuko to snap my picture, one of them decided to munch on me, while searching for some tidbits of food!

We toured the ancient Itsukushima Shrine, a red-laquered, single story complex of rooms and walkways. The shrine was created in 806 AD, when the monk Kobo Daishi ascended Mt. Misen and dedicated the site for the Shingon sect of Buddhism. Although almost all Japanese declare themselves followers of the Shinto religion, Buddhism is also followed, and Buddhist temples exist peacefully next to Shinto shrines. Shinto is the native religion of Japan. It involves the worship of numerous kami, or spirits. There is no image of any of the gods–no statues or paintings. And there is no concept of one god. Yuko tells me there are 8 million gods in the Shinto religion. Some kami represent objects in nature, such as mountains.

I think Miyajima’s best known symbol is the famous 16 meters tall “O-torii” gate, which seems to float on the water. It has been reconstructed 17 times since it was created, after natural disasters have toppled it. If you have ever visited DisneyWorld, and toured the Epcot center, you’ll recognize the replica of O-torii in the Japan exhibit, which graces the rim of the lagoon around which Epcot is seated. Tonight I’ll have dinner with my hosts from Novo Nordisk, and learn more about hemophilia in Japan.

(Photos: O-torii, Laurie mobbed by hungry deer, Itsukushima, prayer paddles)

Tip: visit http://www.cs.indiana.edu/~port/teach/relg/shinto.sketch.html for a brief description of the Shinto religion.

Off to Japan!


It’s almost time for me to say “sayonara” as I prepare to visit Japan on Wednesday. I have been invited by Novo Nordisk to present a keynote speech to a group of hematologists and nurses at their annual hematological meeting. This is a different audience for me, as I usually speak to patients groups and families. I am looking forward to it!

This will be a culture shock of a different kind. While I feel quite at home in Pakistan, India and Latin America, I have never really been to the far east. I visited Bangkok for one week during the World Federation of Hemophilia, but never got to really mingle with the people or see much of the country. On this trip, I will spend time with the doctors and nurses in Hiroshima, and then journey to Tokyo on the famous “bullet train” to meet with families with hemophilia.

Here’s a snapshot of hemophilia care in Japan: an estimated 4,000 people with hemophilia; nationalized health care so that everyone gets factor, although factor usage is about 70,000 per person (much lower than the US average of 100,000- 150,000). There are four factor VIII and two inhibitor products on the market. There is no homecare service, so families must go to a pharmacy to get their factor. Homecare would be revolutionary there; imagine!

The biggest difference I think is cultural: hemophilia is seen as something to not speak about in public. Parents are not seen as empowered; they are more dependent on the medical system. The message of “be empowered about hemophilia” is not one given in Japan.

I am sure I will learn more about this as I visit. My trip will take me to some special sights in historical Hiroshima, and I hope to blog about them as I travel. If everyone is as nice as those folks from Novo Nordisk and the patient groups I have been in contact with, then I am bound to fall in love with Japan, too, as I have many other countries!

Please tune in by Friday to read about my trip!

Note about Japanese flag: the “mon,” the central red disc, is called Hi-no-maru or sun-disc. The disc is set slightly towards the hoist. White symbolizes honesty and purity. Effective date: 5 August 1854.

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