Navigation Links
New NJIT book examines hemophilia and consequences of medical progress

The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress (John Hopkins University Press) is the new book by NJIT Associate Professor Stephen Pemberton. The book recounts the promising and perilous history of medical and social efforts to manage hemophilia in 20th-century America.

Provocatively, the book also uses hemophilia and its history to shed light on numerous problems of consequence to Americans seeking help for what ails them. "Hemophilia as a microcosm of the enterprise of disease management in the United States; that was my goal," said Pemberton.

By the 1970s, a therapeutic revolution, decades in the making, had transformed hemophilia from an obscure hereditary malady into a manageable bleeding disorder. Yet the glory of this achievement was short-lived. The same treatments that delivered some normalcy to the lives of persons with hemophilia brought unexpectedly fatal results in the 1980s when people with the disease contracted HIV-AIDS and Hepatitis C in staggering numbers.

Pemberton asks, "What does it say about modern medicine and society that one of our most advanced, technology-intensive efforts to manage disease and promote health actually facilitated the oppositegreater debility and premature death?"

The Bleeding Disease responds to this question by situating hemophilia management as both a success story and a cautionary tale, one built on the emergence in the 1950s and 1960s of an advocacy movement that sought normalcyrather than social isolation and hyper-protectivenessfor the boys and men who suffered from the severest form of the disease. The book evokes the allure of normalcy as well as the human costs of medical and technological progress in efforts to manage hemophilia. It explains how physicians, advocacy groups, the blood industry, and the government joined patients and families in their unrelenting pursuit of normalcyand the devastating, unintended consequences that pursuit entailed.

"I thought it was important to show readers the ironies as well as unintended consequences that are inherent to many of our ongoing efforts to manage disease," said Pemberton. "In the case of hemophilia, there was a collective effort to transform the patients' hopes for a normal life into a purchasable commodity. Ironically, this strategy made it all too easy for key actors and institutions in the United States to ignore the potential dangers of delivering greater health and autonomy to hemophilic boys and men. Thus, in seeking normalcy, our medical experts and their allies produced the opposite of normal; and it was among the most vulnerable groups in America who paid the ultimate price for this mistake."

Pemberton is in the Federated Department of History at NJIT and Rutgers University, Newark. He is coauthor of The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease, also published by Johns Hopkins.


Contact: Sheryl Weinstein
New Jersey Institute of Technology

Related biology news :

1. Book examines how trees change as they age and grow: What do these clues tell us?
2. Research examines how to apply conductive nanocoatings to textiles
3. Study examines folic acid absorption rates from softgel capsule and standard tablet
4. K-State doctoral graduate examines food bioterrorism for dissertation
5. New study examines immunity in emerging species of a major mosquito carrer of malaria
6. New book examines health and environmental impacts of common (and not-so-common) chemicals
7. Study examines risk of heterosexual HIV transmission in China
8. Physicist examines game theory on microbial level as part of UH Tenneco lecture series
9. What lies beneath: Study examines sediment movement during floods in rivers
10. Iowa State University researcher examines mosquito gene for new disease response
11. Research examines vicious cycle of overeating and obesity
Post Your Comments:
Related Image:
New NJIT book examines hemophilia and consequences of medical progress
(Date:11/17/2015)... SOUTH EASTON, Mass. , Nov. 17, 2015 /PRNewswire/ ... "Company"), a leader in the development and sale of ... to the worldwide life sciences industry, today announced it ... closing of its $5 million Private Placement (the "Offering"), ... Offering to $4,025,000.  One or more additional closings are ...
(Date:11/12/2015)... , Nov. 12, 2015  Arxspan has ... of MIT and Harvard for use of its ... information management tools. The partnership will support the ... biological and chemical research information internally and with ... be used for managing the Institute,s electronic laboratory ...
(Date:11/10/2015)...  In this report, the biomarkers market ... type, application, disease indication, and geography. The ... consumables, services, software. The type segments included ... biomarkers, and validation biomarkers. The applications segments ... drug discovery and development, personalized medicine, disease ...
Breaking Biology News(10 mins):
(Date:11/25/2015)... 26, 2015 --> ... 2016 - 2020 report analyzes that automating biobanking ... quality in long-term samples, minimizing manual errors, improving ... minimizes manual errors such as mislabeling or inaccurate ... it plays a vital role in blood fractionation, ...
(Date:11/25/2015)... , November 25, 2015 2 ... première fois les différences entre les souches bactériennes ... celles des êtres humains . Ces recherches ... et envisager la prise en charge efficace de ... diagnostiqués chez les chats .    --> ...
(Date:11/25/2015)... HOLLISTON, Mass. , Nov. 25, 2015 ... a biotechnology company developing bioengineered organ implants for life-threatening ... will present at the LD Micro "Main Event" investor ... PT. The presentation will be webcast live and posted ... also be available at the conference for one-on-one meetings ...
(Date:11/25/2015)... QUEBEC CITY , Nov. 25, 2015 /PRNewswire/ ... "Company"), affirms that its business and prospects remain ... , Zoptrex™ (zoptarelin doxorubicin) recently received DSMB ... program to completion following review of the final ... met Phase 2 Primary Endpoint in men with ...
Breaking Biology Technology: