It is the aim of medical science to increase our capacity to treat effectively the most severe manifestations of disease. It is our expectation that society will reward this pursuit of new medical knowledge by providing the enabling resources to translate it to better care for patients. The report in this issue of Blood by Gringeri and colleagues (page 2358) entitled “Cost of care and quality of life in hemophilia complicated by inhibitors: the COCIS Study Group” provides compelling data that extensive investment in this particularly problematic subset of the hemophilia population, when applied in the context of a comprehensive hemophilia treatment center care model, can result in an acceptable quality of life for most of these individuals. Certainly the costs for such care, when individualized, are extraordinary: approximately €18 000 per month. This is a cost that is consistent with earlier reports1 and reflects overwhelmingly the expense associated with the need to use “by-passing” coagulation factor concentrates to achieve hemostasis. As the authors indicate, a significant portion of these exceedingly high costs is attributable to the need for these bypassing agents, and to provide hemostasis for restorative surgery and the resultant rehabilitation—all legacies of the high morbidity of a long-standing factor VIII or IX inhibitor.
Two significant observations distinguish this publication. First, since the cohort is drawn from approximately one third of the individuals meeting accepted definitions of inhibitor classification in a large country (Italy), it permits the authors to extrapolate the cost of care for these rare individuals across the society's entire health care delivery system—an estimated 0.70 per Italian citizen per year. This enables the disinterested observer to place the costs in context. Second, the employment of validated quality-of-life methodology to the scrupulously collected cost data allows determination of an expenditure for expected clinical impact to be determined. Again this provides a contextual framework for comparing this significant morbidity to other required clinical interventions by the health care system. For extreme cost outliers, like hemophilia with inhibitors, this is necessary both to justify the expenditures and to define strategies to increase positive clinical impact per monetary unit expended. Further, it may well justify expanded research into more aggressive and costly strategies for morbidity prevention in the hope that the up-front costs will ultimately diminish costly rehabilitative services later.
The title is ascribed to Karl Marx 1875 from Critique of the Gotha Program; it was in quotes by Marx and may have originated with Louis Blanc (1811-1882) or Morelly (1840).
