Hemophilia holocaust

Justice for the Victims

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.

Memorial Day of a Different Sort

Today is Memorial Day in the US, where we remember and honor those brave soldiers who fought in wars to protect our country and liberate others. It would be hard to find a family who does not have someone in it who gave their life for their country. I have at least one in my family: my uncle Jim Morrow, my father’s brother, who died in 1967 in Viet Nam. We find ways to remember our brave heroes: Jim has a place of honor on the Vietnam Wall in Washington DC, and on the virtual Wall, on line.

This week we will also remember heroes from a different war: HIV.

On June 2, PBS will at last broadcast Bad Blood: A Cautionary Tale, by Marilyn Ness. This emotional, deeply moving documentary portrays life with hemophilia before the “war,” when there was no blood clotting factor. This in itself can bring you to tears, watching children hobble about on crutches, suffering with joint bleeds, in hospital beds when they should be out in the sunshine playing. Then, the miracle of factor, and how it transformed lives from being crippled to being freed. Factor liberated all the children from this sad fate.

Who could have ever, in their wildest dreams, known that in the late 1970s a virus, unlike anything the world had ever seen, lurked in the nation’s blood supply? This is the stuff of science fiction, not reality. But it became our reality. Thousands were infected, and thousands died horrible deaths.

I know personally almost many of the heroes in the film: Dana Kuhn, Bob Massie, and Glenn Pierce. Bob says, this “is the story of a failed medical system, of companies and politicians putting profits before people, and of patients being kept in the dark about their very lives… It is the story of a critical piece of American history, when thousands of patients, doctors, and families came together to repair a broken system.”

Here is also Bob’s statement, which best expresses the heroism evident in those infected: “When I learned, more than twenty-five years ago, that my lifesaving injections had exposed me to a dangerous virus, I made the resolution to continue living each day, always staying true to myself and those I loved, and never giving up hope. I was lucky, and overcame them both with the help of world-class medical care and the love and support of my friends and family.” Bob is now running for US Senate.

But thousands of others were not so lucky. Like fallen soldiers in a devastating, insidious war, they are now remembered and honored in Bad Blood, which memorializes their struggle, their sacrifice and their legacy. Bad Blood is their local memorial park, their Viet Nam wall, their Iwo Jima monument. Clearly, their deaths, and the determined action of the survivors to seek justice and a change in the blood collection system and factor production, have made hemophilia treatments– and our entire blood banking syste–safer.

I cannot stress strongly enough to watch the movie. If you want to know the psyche of the US hemophilia community, understand its anguish and advocacy and determination, you must see this movie. If you want to see true American heroes, watch this movie. It’s not just a documentary, but a memorial to fallen soldiers.

Bad Blood is showing on WGBH at 10AM, 4PM, 6PM, and 11PM on June 2nd. Please forward and share this with your friends, family, community members, and anyone in the medical field.

Great Book I Just Read

Johnny Got His Gun
by Dalton Trumbo

You may have, like me, read this book in high school. It’s worth another read. Written in 1959, the novel was actually written in 1938 and published just after the start of World War II. This is the story of Joe Bonham, a youjng American WWI soldier who is horrifically disfigured and disabled. Told only from Joe’s thoughts and memories, Joe slowly becomes conscious and then must decipher what is happening to him. He realizes slowly he has lost all his limbs and his face; how does he cope with this horrific realization? All he has left is his skin and ears as sensory organs; he struggles to control his panicky mind.

Memories of home and family flood him; he reflects on why he went to war. Trumbo has a message, one that not all Americans in these times may want to hear. But we grow as humans when we read what we don’t always agree with; the horror of war, its terrible human cost. It can be viewed as a book about war and its effects (think of the thousands of scarred soldiers returning now; for second year in a row, the US military has lost more troops to suicide than to combat in Iraq and Afghan) or simply about the strength of the human spirit and surviving unimaginable loss in any field, at any time. This book is worth a read, though there are problems with run on sentences, grammar, etc. Two stars.

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