Assessment of the health and the economic burden of haemophilia in Belgium: a rare, very expensive and largely unknown disease with multiple public health challenges

Henrard, Séverine;Hermans, Cédric;Devleesschauwer, Brecht;Speybroeck, Niko
(2012) 5th European Public Health Conference All Inclusive Public Health — Location: (Malta) Portomaso, St. Julian’s (8.November.2012)

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Background : Haemophilia is a rare hereditary haemorrhagic disease requiring regular intravenous injections of clotting factor (CF). The aim of this study is to estimate the health and the economic burden of haemophilia in Belgium. This study may also be useful in a global future evaluation of haemophilia since worldwide such a study has never been done. Moreover, the study fits with the growing interest for haemophilia of the Belgian government as part of its priority planning for rare and chronic diseases. Methods : The burden was expressed in Disability-Adjusted Life Years (DALYs), the number of lost healthy years resulting from both disability and premature mortality. The World Health Organization Global Burden of Disease approach was used employing an incidence perspective. Data were drawn from the literature when data from federal institutions and health insurance were not available. Disability weights for DALY calculations were derived using the quality-of-life tool EuroQol (adults) and Haemo-Qol (children). The analyses take account for the type of haemophilia, severity and age groups. Results : In Belgium, haemophilia results in 196.6 DALYs (95% Credibility Interval [CrI] = 106.4–302.3). This represents a mean of 14.8 DALYs by person with haemophilia (PWH) (95% CrI = 12.2–17.6), with large differences regarding the severity of haemophilia (36.3 DALYs per severe PWH against less than 2.5 DALYs per moderate or minor PWH). The total costs reach a mean of 6.7 million Euros per PWH during his life, including 80.0 % (5.4 million Euros) for the CF. In 2009, the expenditures in CF costed 70.7 million Euros for the 936 PWH in Belgium, holding the 17th place in the ranking of total net drug expenditures of the ambulatory health care insurance, with the 226th place in the ranking of the defined daily dose. Conclusions : The analysis shows a high economic burden compared to a small health burden, with a cost of 452,245 Euros per DALY. On the other hand, a high individual health burden is observed. Despite the major therapeutic developments and a consequent investment in the substitutive treatment, the haemophilia impact on public health remains significant, especially for people with severe haemophilia. Initiatives for reducing this burden should be identified and supported.
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Henrard, S., Hermans, C., Devleesschauwer, B., & Speybroeck, N. (2012). Assessment of the health and the economic burden of haemophilia in Belgium: a rare, very expensive and largely unknown disease with multiple public health challenges. European Journal of Public Health, 22(suppl 2), 34-35. https://doi.org/10.1093/eurpub/cks114 (Original work published 2012)