title: The elephant in the room: ethical issues associated with rare and expensive medical conditions.
abstract: The treatment of rare and expensive medical conditions is one of the defining qualities of paediatric cardiology and congenital heart surgery. Increasing concerns over healthcare resource allocation are challenging the merits of treating more expensive forms of congenital heart disease, and this trend will almost certainly continue. In this manuscript, the problems of resource allocation for rare and expensive medical conditions are described from philosophical and economic perspectives. The argument is made that current economic models are limited in the ability to assess the value of treating expensive and rare forms of congenital heart disease. Further, multi-disciplinary approaches are necessary to best determine the merits of treating a patient population such as those with significant congenital heart disease that sometimes requires enormous healthcare resources.
authors.affiliation: 1Department of Surgery,Division of Cardiovascular Surgery,University of Pennsylvania,School of Medicine,Philadelphia,Pennsylvania,United States of America.
authors.forename: Constantine D
authors.initials: CD
authors.lastname: Mavroudis
authors.affiliation: 2Johns Hopkins Children's Heart Surgery,Florida Hospital for Children,Orlando,Florida,United States of America.
authors.forename: Constantine
authors.initials: C
authors.lastname: Mavroudis
authors.affiliation: 3Johns Hopkins Children's Heart Surgery,All Children's Hospital,St Petersburg,Florida,United States of America.
authors.forename: Jeffrey P
authors.initials: JP
authors.lastname: Jacobs
mesh_terms: D002309:Cardiology / Q000191:economics / Q000941:ethics; D005380:Financing, Government / Q000191:economics / Q000941:ethics; D017048:Health Care Costs / Q000941:ethics*; D015276:Health Care Rationing / Q000191:economics / Q000941:ethics*; D006330:Heart Defects, Congenital / Q000191:economics / Q000628:therapy*; D006801:Humans; D010372:Pediatrics / Q000191:economics / Q000941:ethics; D035583:Rare Diseases / Q000191:economics / Q000628:therapy*; D013903:Thoracic Surgery / Q000191:economics / Q000941:ethics
keywords: Congenital heart disease; rare diseases; resource allocation