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For thousands of years boys known as "bleeders" faced an early, painful death from hemophilia. Dubbed "the Royal Disease" because of its identification with Queen Victoria, the world's most renowned carrier, hemophilia is a genetic disease whose sufferers had little recourse until the mid-twentieth century. In the first book to chronicle the emergence and transformation of the hemophilia community, Susan Resnik sets her story within our national political landscape—where the disease is also a social, psychological, and economic experience.
Blood Saga includes many players and domains: men with hemophilia and their families, medical personnel, science researchers, and the author herself, who was Director of Education of the National Hemophilia Foundation in the early 1980s. At that time the "miracle treatment" of freeze-dried pooled plasma blood products enabled men with hemophilia to lead full, normal lives. Then the AIDS virus infiltrated the treatment system and over fifty percent of the hemophilia community became HIV-positive. But rather than collapsing, this community refocused its priorities, extended its reach, and helped shape blood safety policies to prevent further tragedy.
The hemophilia community includes people from every socioeconomic and ethnic group, and Resnik's narrative and use of oral histories never lose touch with those affected by the disease. Her extensive informant interviewing allows much of this social history to be told by participants on all levels: parents, wives, nurses, doctors, government agency directors, health care providers, and many others.
Gene insertion therapy now holds the promise of a cure for hemophilia in the near future. Scientific breakthroughs inevitably become intertwined with the industry and academic medical centers that govern the national health care system. And in that system, says Resnik, costs and safety are sometimes contending issues. She makes clear that the lessons learned in Blood Saga apply to all of us.
- Sales Rank: #1718212 in Books
- Published on: 1999-08-25
- Original language: English
- Number of items: 1
- Dimensions: 9.02" h x .88" w x 5.98" l, 1.47 pounds
- Binding: Hardcover
- 308 pages
From Library Journal
This social history of hemophilia in the United States begins in the early 20th century, when most hemophilia patients did not live past their teens. Resnik, a medical school professor (Univ. of California, San Diego) and former director of education for the National Hemophilia Foundation, then discusses the "golden era" when new treatments allowed longer, improved lives and greater independence. This is followed by an in-depth analysis of the devastating events that led to increased activism during the AIDS crisis. Resnik conducted exhaustive research and interviewed numerous key players to provide firsthand accounts of the medical, political, and social events that shaped this community. She concludes with a look at the lessons we have all learned from their experiences. A lengthy glossary, statistical data, and an extensive bibliography are useful additions. This scholarly yet highly readable book is recommended for academic and public libraries, particularly those with larger health sciences collections.ATina Neville, Univ. of South Florida at St. Petersburg Lib.
Copyright 1999 Reed Business Information, Inc.
From The New England Journal of Medicine
In 1984, the Centers for Disease Control (CDC) announced that, between the years 1979 and 1984, 90 percent of patients with hemophilia who were treated with clotting-factor concentrates had been infected with the human immunodeficiency virus (HIV). A former director of education at the National Hemophilia Foundation, Susan Resnik has written a fascinating page turner about one of medicine's darkest periods. She describes the role well-meaning physicians and organizations trapped in fear and denial had in worsening the situation. In the final chapters of her book, Resnik shows how the hemophilia community survived -- renewed in spirit, strong and more united than ever.
The comprehensive approach to the treatment of hemophilia was initiated by Shelby Dietrich, a pediatrician in Los Angeles, in 1957. The limiting factor of the program was the lack of a potent, concentrated source of clotting factor (factor VIII) that could be used at home at the first sign of bleeding. This limitation was overcome by the discovery of cryoprecipitate by Judith Graham Pool in 1965. By 1968, Hyland Laboratories had received a license to market pooled factor VIII that had been refined and concentrated from cryoprecipitate. In 1973, Peter Levine and colleagues showed that the treatment of patients with hemophilia at home resulted in a net savings in health care costs by reducing the numbers of emergency room visits, hospitalizations, and orthopedic surgeries. Resnik details the critical role of "Dr. Marcus Victor," her code name for an ambitious and talented platelet physiologist, in advancing the care of patients with hemophilia. After a two-year struggle, "Victor" and other physicians, with the solid backing of the National Hemophilia Foundation, were successful in getting Congress to authorize funding for 26 comprehensive hemophilia-treatment centers.
The establishment of hemophilia-treatment centers around the country ushered in a new, "golden" era for patients with hemophilia and their families. Patients even began engaging in athletics, and those with the mild form of the disease were gradually allowed to become involved in strenuous sports, even contact sports, as confidence increased in the miraculous power of factor VIII concentrates to prevent bleeding. However, in more than 90 percent of those treated with the concentrates, hepatitis developed. But the phenomenal improvement in lifestyle far outweighed concern about any future problems. A few "dinosaurs," such as Oscar Ratnoff, decided there was cause for concern. He restricted patients to treatment with the much safer but less convenient cryoprecipitate. A method of pasteurization that inactivated most viruses was discovered, but it increased the cost of the concentrates, and its routine use was not recommended.
In 1981, the first cases of AIDS were reported, all in gay men. By the summer of 1982 three patients with hemophilia had contracted AIDS, and the National Hemophilia Foundation issued an advisory to its members in which it passed on the information it had received from the CDC, adding that "at this time the risk of contracting this immunosuppressive agent is minimal." Leaders in the blood-banking community refused to view the problem as a potential disaster. One investigator from the CDC exploded: "How many people have to die?... Give us the threshold of deaths that you need in order to believe that this is happening." By the following year, there were so many cases that no one any longer questioned the extreme danger to the hemophilia community. By January 1988, the National Hemophilia Foundation announced that all products available for the treatment of hemophilia were free of contamination with HIV. But for most patients with hemophilia it was too late: HIV infection had already occurred.
The final chapters of Resnik's book chronicle the rising rage and anger of patients with hemophilia who were infected with AIDS, not only because of what happened to them, but also, in many instances, because of what happened to their wives and children. Lengthy, protracted lawsuits against the manufacturers of the concentrates were eventually successful in getting some compensation for the affected patients and their survivors. Surprisingly, physicians and national advisory groups were not the defendants in such suits, nor were they prosecuted outright, as occurred in France. The improvements in treatments for AIDS and the advent of gene therapy in the late 1990s renewed the hope and optimism of the hemophilia community.
Resnik's book forcibly brings home the wisdom of the ancient dictum "first, do no harm." She is careful in her criticism of physicians and organizations but does not fail to point out appropriately the important role that denial, paternalism, and hubris had in the disaster that befell the hemophilia community. I strongly recommend this book to those with hemophilia and their families, as well as to physicians, nurses, and others involved in the care of patients with hemophilia. I would also highly recommend it to medical students. Young women and men embarking on a career in the brave new world of gene therapy will find much in this book to contemplate.
Reviewed by James P. Crowley, M.D.
Copyright © 2000 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.
Review
"There is a wealth of information in this scholarly book for medical historians, health care policymakers, health care providers, aspiring epidemiologists, and those who would like to read a fascinating detective story that is sobered by the worst nightmare of modern medicine."--"Journal of the American Medical Association
Most helpful customer reviews
1 of 1 people found the following review helpful.
A Hemophiliac's Must Read
By jbdean
Personally, I find Ms. Resnick's book fascinating. She gives a very good outline of the history of hemophila and how advances in technology became both a savior and a downfall to the community. I dont think she sweeps anything "under the rug." I think the prior poster needs to consider that at the time this book was written, the verdict was not completely out yet and Resnick wanted to take a more historical approach to determine how the initial corporate-patient group relationships were formed and how the problem arose in the first place.
The structure and story given by Ms. Resnick I believe comes across as objective as possible, which is difficult to prepare on a topic such as this. I think is actually a cautionary tale to medical patient communities and how they should NOT too closely align themselves with corporate entities, and how small accessions can lead to a slippery slope to total integration of the two.
Unfortunately, at the time clotting drugs came on the market what other choice did affected families have? The results were SO drastic and the alternative outcomes SO different, patients had no option. As Resnick points out, they really had no alternative but to become "canaries in a mine shaft," at the time they were canaries for the blood supply, they have now also become canaries about corporate-patient relationships.
6 of 7 people found the following review helpful.
Interesting Tale of a Unique Medical Tragedy of our Times
By A Customer
Fascinating read where the cure for the hemophilia community ended up killing those it meant to save. Resnick's style makes easy reading of a complex story.
0 of 0 people found the following review helpful.
Interesting, but . . .
By Bob Graham
As an older hemophiliac I appreciate the author sharing her knowledge of bleeding disorders history and AIDS; too little is known about what happened. At other times it felt as though the author was selectively glancing past some issues. She candidly discusses mismanagement at the NHF in the '80's and '90's. But on blood safety the author fails to tackle key questions like - why when the risk of Hepatits infection from blood was already well known did so many push the use of factor concentrates (with vastly higher risks of infection) without also pushing blood testing, or why did it take so long for the NHF and most treatment centers to properly warn patients about AIDS until years after it was discovered in the blood supply. In all, this book helps fill in some details, while leaving just as many questions.
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