Hemophilia in Japan

Justice for the Victims

Laurie Kelley December 3, 2023

December 1 is recognized as World AIDS Day—this one is number 35, since the day was designated. Social media lit up with remembrances for those we lost. The hemophilia community was especially hard hit, so much so that it has been called the “Hemophilia Holocaust.” Nearly half of the known patients in the US died. It was the worst medical disaster in US history and deserves to be remembered.

It was also a disaster worldwide. One of the best books on the subject is And the Band Played On, by the late Randy Shilts. It describes in detail how HIV spread, was identified and how it impacted different countries in the world.

Below is a review submitted by Richard Atwood of North Carolina, who probably has the largest collection of bleeding disorder and HIV publications in the world. The review is from a book about redress movements—specifically for HCV infection—led by victims in the hemophilia communities in both Japan and South Korea. Richard notes that we tend to forget that not only HIV, but also HCV, infections accompanied treatment for blood disorders around the world, and that victims in each country have different situations resulting in different responses. 

Accidental Activists: Victim Movements and Government Accountability in Japan and South Korea byCeleste L. Arringtoncompares and contrasts, for both Japan and South Korea, the victim redress movements for blood products used to treat hemophilia that were tainted with hepatitis C (and also for survivors of harsh policy controls applied to those individuals with Hansen’s disease, and North Korean abduction cases). Following the HIV victim redress movements for hemophilia in the 1990s, the hemophilia organizations in both countries mobilized for HCV.

About half of all hemophilia patients in Japan and South Korea were infected with HCV from tainted blood products. Other patient groups, such as mothers at delivery and surgery patients, also became HCV infected. Of the 2,000 hemophilia patients in South Korea, 25 became infected with HIV from local factor IX concentrate. Fewer South Korean hemophilia patients used factor concentrate due to greater poverty, while 40% of Japanese hemophilia patients became HIV infected.

The HIV lawsuits eventually resulted in monetary settlements to those HIV infected, with greater amounts granted in Japan in 1996 than in South Korea in 2013. Using some of the same lawyers again, lawsuits for HCV were brought forward—Japan in 2002 and in Korea in 2004—to sue the government and pharmaceutical corporations. South Korea advocacy faced hurdles: it was difficult to prove causality; the statute of limitations was applied; the two hemophilia organizations were in disagreement; public support was difficult to arouse; and the government delayed an epidemiological study, so there was no redress. In Japan, there were five lawsuits, an official inquiry committee, bottom-up public support once victims revealed their real names, and a bill passed for compensation, though hemophilia patients were left out, so there was some redress.

This book includes 18 pages for a bibliography and nine pages for an Index (with hemophilia included). Chapter 4, “The politics of Hepatitis C-Tainted Blood Products,” focuses on hemophilia patients. For her research design, the author conducted 225 participant/observer interviews in both South Korea and Japan in 2007, 2009, 2012, 2013, and 2015. The author characterized the analysis of international victim redress movements as naming, blaming, claiming, and shaming for the process of redress. This is an over simplification of the construct, though one easier to remember. She summarized in Table 4.2 her analysis of the HCV victim movements in Japan and South Korea. In the table, the components of redress (official inquiry, apology, compensation and other assistance, and institutional reforms) were scored (0 – not at all; 1 – partially; or 2 – fully). Japan received a score of 7 for full redress, while South Korea received a score of 1 for no redress (p. 145). For specific hemophilia questions, the author consulted Dr. Jerry Powell at UC-Davis, who is cited in Footnotes 2 and 121 (pp. 109, 142). The title accurately depicts the victims, who did not choose their adverse medical consequences and decided to seek redress. The subtitle summarizes the book. The author is an assistant professor of political science at The George Washington University.

Accidental Activists: Victim Movements and Government Accountability in Japan and South Korea by Celeste L. Arrington, 2016, Ithaca, NY: Cornell University Press. 231 pages.

Taking Japan to the Next Level

Laurie Kelley June 12, 2007

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!

See photos from the entire trip here. 

Off to Japan!

Laurie Kelley June 4, 2007


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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