A Letter to the Editor (LTTE) has been published in the latest issue of the highly-regarded Journal of Thrombosis and Haemostasis (JTH), which draws upon the unique viewpoint of those with lived experience about the reclassification of haemophilia – featuring On The Pulse director, Laurence Woollard, as a co-author.
The inspiration for the LTTE stemmed from an original review article by Thacil and colleagues1, who argue for greater consideration of bleeding phenotype and health-related quality of life when determining haemophilia severity, not just based on the traditional categories of circulating clotting factor activity levels i.e., mild (5-40% of normal), moderate (1-5%) and severe (<1%) diagnoses.
This had generated significant debate across social media. Professor Michael Makris, Emeritus Professor of Haemostasis and Thrombosis in Sheffield, UK, who alongside the US-based paediatric haematologist-oncologist, Dr. Guy Young, shared their own clinical perspectives on the matter arguing that, “if it ain’t broke, don’t fix it!”
Dr. Rich Gorman, a research fellow at the Brighton and Sussex Medical School in the UK and a person living with haemophilia, first drafted and coordinated the LTTE with Laurence as a formal response, noting some of the nuances and arguments for and against Thacil et al‘s proposal of reclassification. Specifically, this was through the lens of those affected as well as drawing on their individual disciplines as a medical sociologist and a health policy professional, respectively.
To read the LTTE in full, click here.
About the JTH
The JTH is the official journal of the International Society on Thrombosis and Haemostasis (ISTH) and seeks to advance knowledge from the basic science to clinical aspects of patient management related to thrombosis and bleeding disorders. Its impact factor as of 2023 is 10.4.
For more information, please visit the journal’s webpage.
On The Pulse