Blog Archive

Monday, June 25, 2007

A Mighty City

On Friday, Julia (director of Project SHARE), Zoraida (executive assistant) and I went to see the opening of "A Might Heart," the movie about Wall Street Journal reporter Daniel Pearl, who was kidnapped in Karachi, Pakistan in 2002. The movie stars Angelina Jolie as Marianne Pearl, his pregnant wife and fellow reporter, whose book the movie is based on. Julia and I had just been to Karachi in mid-April, so it was stunning for us to see so much of Karachi in the film. It accurately captures the densely packed former capital of Pakistan, the sounds, the crowds, the color, the craziness. This is what it was like for us to travel there. It might beg the question that so may ask us, "Why do you want to go there?" But I think Randall Bennett (head of the State Department's bureau of Diplomatic Security) sums it up best when he says, "I love this town!"

Julia and I popped out of our seats and stared at each other when we heard that Pearl had a rendezvous planned with his kidnappers at The Village restaurant; this is where we had lunch on April 15. (In the movie they used a different restaurant with the same name to disguise it) The movie is worth seeing for many reasons: Jolie gives a great performance, as does her supporting cast. It tells a worthwhile, true story. The story itself is not that remarkable; reporter kidnappings happen a lot in this new era, as even this past weekend BBC reporter Alan Johnston was kidnapped in Gaza City, and a photo is now posted of him on the internet wearing an explosive vest. The Pearl story might have been just another footnote in the history of journalism were it not for the gruesome ending, which was posted on the internet and viewed by millions around the world, instantly sensationalizing it. At the end of the movie, I still did not get a real sense of who Daniel Pearl was, and only felt that Marianne was stoic as she underwent this horrific ordeal. To me they seem like ordinary people who got caught in a situation they both knew could happen. There are better movies about survival, stoicism, journalism and character. But this one I was particularly interested in because it took place in Karachi, a city where we work to help an estimated 1,300 with hemophilia, and where I had just visited.

Karachi was in the news over the weekend when torrential rains and strong winds battered the city, resulting in over 230 deaths. Much of the city lost communication and electrical power. I know our hematologist friends there are doing what they can to keep hospitals open to help those with hemophilia.

While Pakistan is not fairly represented by just Karachi, which will appear as the Wild West in "A Might Heart," Pakistan is a beautiful but struggling nation. President Musharraf, who launched a military takeover in September 1999 (just two weeks after I first visited) is in trouble. Despite improved economic growth, the country has seen Musharraf consolidate his power, through dictatorial means. Firing his chief justice (Julia and I flew to Islamabad with the newly appointed chief justice, who was swarmed by media), silencing media, and shooting demonstrators have led to a call for his resignation. And, he is deeply tied to the US, which gives billions in "aid" to fight the Taliban, which is deeply entrenched in northern parts of the country. It's a complex country, and America is intricately tangled in its future now. But go see "A Might Heart." It will plunge you immediately into a country most Americans have never seen, and will never see. As for me, I cannot wait to return to Pakistan, and continue our humanitarian work there.

Great book I read: "Three Cups of Tea," by Greg Mortgenson and David Oliver Relin. A failed climb of the treacherous K2 in Pakistan left Greg Mortgenson lost in the Himalayas and almost dead... until he is cared for by Pakistanis in a remote mountain village. The true story of one man's vision and mission to build schools for impoverished children in Pakistan's remote frontier, a breeding ground for the Taliban, to enlighten and educate children who might never receive eduation. In his work, he has inadvertently become an expert on the culture, history and struggle of people in the hinterlands of Pakistan. While not a seamlessly written book, the story is so compelling, and the mission so vital and amazing, you will not be able to put it down. Greg Mortgenson is not a saint or a genius, just one determined and focused man with tremendous compassion, and I would say, a "mighty" heart. Not just a great story, but it conveys what I feel the people of Pakistan are truly like: warm, full of faith, suffering and gracious. And Greg shows us the wisdom of fighting terror with education and compassion, not weapons. Go to www.threecupsoftea.com to learn more, to order and to see where Greg will be speaking. I intend to hear him when he comes to Massachusetts early next year. Four stars!

Monday, June 18, 2007

Bloggers Unite!

Blog tracker Technorati estimates there are 100,000 new blogs created each day, and 1.3 million posts added daily. The blogging "elite," who have at least 500 other blogs linking to them, number about 4,000. We fall short of these stats in the hemophilia community. We have maybe two, three blogs? We are just in the early stages of developing hemophilia blogs, and HemaBlog is among the first, and definitely the first blog dedicated to solely hemophilia issues.

And we are evolving at last. I received a friendly email this past week from Johnpatrick, a young man with hemophilia and fellow blogger. He has been reading my blogs, and wondering where are all the other people with hemophilia on the internet? Where do they hang out? Are they interested in reading about other people with hemophilia? Good questions!

Johnpatrick writes, "I'm a twenty-something with severe factor VIII deficiency with an inhibitor, and I've decided to take a cue from people like you and Shawn Decker (author of "My Pet Virus") and start a blog about the hemophilia experience. I think I can bring something new to cyberspace by talking about my own experiences as a hemophiliac and law student. I don't know a lot of hemophiliacs, and I don't know where in the internet they tend to hang out. I was hoping you could help me, a fledgling blogger attract young professional hemophiliacs like myself to the site.

Johnpatrick's web site is: http://breakingtheseventhseal.blogspot.com/

It's very interesting and well written. Please take a moment to visit him and drop him a line, especially if you also are a young man or woman with hemophilia. He has an interesting post about hemophilia and Colin Powell. And we welcome your comments as well!

Speaking of lawyers, here's a good book I am reading: "Thirteen Moons," by Charles Frazier, who also wrote "Cold Mountain." Sober, beautifully written personal account of a white boy raised by the Cherokee, who later becomes a lawyer and tries to defend them and preserve their land and way of life when President Jackson orders all Indian land forfeited, and all Indians to relocate to the West. It is historical fiction, yet a subtle, pragmatic and blunt look at our nation's handling of America's indigenous people.

Tuesday, June 12, 2007

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!

Sunday, June 10, 2007

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)

Friday, June 08, 2007

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.

Monday, June 04, 2007

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.
 
Bayer