Author: Robert Tindle
Jacobs Well, Qld: Ocean Reeve Publishing, 2022
Paperback ISBN 9781922532626
As general practitioners (GPs) we regularly work with our patients as they navigate the healthcare system. However, for one group of our patients – those with rare diseases – the cracks in the pathway are often wider than the stepping stones. Paradoxically, although a GP may only have one patient with a particular rare disease per career, there are so many rare diseases that most GPs have many such patients, reflective of the approximately 8% of the population who live with a rare disease.1 The strong professional relationships that develop between GPs and their patients are a cornerstone of wellbeing for those with rare diseases.2
Professor Tindle explores the challenges that those with rare cancers face in obtaining the latest in cancer therapy, immune checkpoint inhibitor (ICI) medications. Although these medications are available for many cancers, they are only funded by government access schemes for common cancers.
This book explores the lives of people whose cancers are not sufficiently common to warrant government funding for ICIs. The only effective option is usually self-funding, which is not for the faint-hearted as the cost per course is in the tens of thousands of dollars, paid upfront before each dose. In keeping with the movement to explore clinical medicine from a patient rather than practitioner or disease perspective,3 the text is a fictionalised account of people and their families whose lives become interwoven through their connection to ICIs.
The most recent Health of the nation report published by The Royal Australian College of General Practitioners notes that patient access to healthcare is the number one health system issue.4 Patient discussions are most effective when everyone is best informed of the issues. I recommend this book as an insightful background to the specific moral, ethical, legal and financial challenges when bringing new life-saving treatments to the community, information that will assist in managing your patients affected by these challenges.