Title: The Bleeding Disease
Author: Stephen Pemberton
Publisher: The John Hopkins University Press, 2011
Reviewer: Candy Cooley, national genetics awareness programme manager
What was it like?
This book is written to explain the unintended medical consequences of treating haemophilia within the US during the late 1950’s, 1960’s,1970’s and 1980’s. The book is written by a man who came to work in a laboratory setting by chance and clearly inspired by the director of the laboratory, a pioneer in haemophilia treatment, wanted to explain the history of haemophilia treatment. And while the book looks “old” the information within it is shockingly relevant to the rapid development of ‘new’ treatments today.
The book reminds us that until the 1960/70’s haemophilia was a disease that caused acute physical damage and death. There was a push to help people with haemophilia to be “normal” as many were stigmatised within society. The development of concentrated blood products revolutionised the treatment particularly of boys and men who were categorised as “severe haemophiliacs”. Unfortunately by the 1980’s nine out of ten of these individuals had acquired a HIV (human immunodeficiency virus) from these blood products.
Towards the end of the 1950’s there was a dip in the number of “volunteer” blood donors despite community campaigns. For many parents of children with haemophilia this was a distressing time with media claims of low resources. It is therefore not surprising that the development of Cryoprecipitate in 1964 was hailed as a major development and that it would be “so safe and stable” that people with haemophilia would be able to “carry it around and inject themselves”, the drive for “normalcy” continuing. As collecting blood just for plasma meant that the donors were not anaemic that could donate more often and because the process was lengthy the donors were paid for their time.
A mix of corporate interests, poor government decisions, the fear of stigma and AIDS denial amongst experts led to the health of the US blood supply being compromised in a lethal way. Production of cryoprecipitate was big business in the early 1980’s with many laboratories producing their “version” with little control. And people with haemophilia were often unaware of the consequences that the “experts” were beginning to realise. There was also strong opposition to banning or screening of homosexual men, who were blood donors, as it was considered to be Human Rights discrimination.
The conclusion of the book is a balanced consideration of the choices for parents and the individuals with haemophilia had to take. It also looks at the scientists and clinicians for whom the development of “cure’s” and treatment for this disease was core to their lives. It also looks at the responsibilities of governments and drug safety agencies and their role in ensuring this situation does not occur again.
What were the highlights?
It is a really good review of the historical developments of medicine within a particular clinical condition, but also gives and insight into the culture of society and medical development of this period.
Strengths & weaknesses:
Once over the rather unappetising front cover this is a good “read”. It is rather text heavy and the 50 plus pages of “Notes to pages” at the back is daunting but it is worth reading.
Who should read it?
General readers, haemophilia nurses, people interested in treatment developments and the damage medical “care” can unintentionally cause.