Hemophilia in Japan

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!

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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