Should we consider the costs of treatment of rare disorders: Is justice just a myth?

Isaacs D, Kilham H, Xafis V

Children’s Hospital at Westmead, Westmead NSW 2145 (

Justice and equity are important ethical principles in health care, but life is not fair. Children may rarely be born with severe health problems which are expensive to treat. The principle of equity could be interpreted as meaning we should not allow an ill child to be disadvantaged by the severity or rarity of their illness, even if their treatment is extremely costly, so we should pay whatever it costs. Alternatively, if the health budget is limited, equity might dictate that we should not spend excessive amounts on one child. In this talk we discuss how we ought to decide about expensive treatments for rare disorders.


David is a paediatric infectious disease specialist and general paediatrician from Sydney. He has been editor-in-chief of the Journal of Paediatrics & Child Health since 2009. In 2002, he and A/Prof Henry Kilham obtained post-graduate diplomas in bioethics from Monash University. Since then they have supervised medical students in bioethics research projects, taught post-graduate bioethics at the University of Sydney and published over 100 peer-reviewed articles on bioethics.

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