Implementation of a public policy in inherited bleeding disorders in a less-resourced country: the Brazilian experience

Inherited bleeding disorders (IBDs) are a heterogeneous group of diseases presenting with variable bleeding severity. It requires life-long treatment, which is costly and complex. Delivering care to IBDs is a challenge for less-resourced countries. We aimed to describe the strategies used to implement an IBD program, as a health public policy, in a lower-middle income country and its impact on reported outcomes. We collected information from scientific articles searched in LILACS, Scielo and PubMed. We also accessed documents (guidance, leaflets, surveys, protocols) published by the Brazilian IBD Program/Ministry of Health. The topics analyzed were mainly related to the implementation of a national registry, procurement of coagulation factor concentrates (CFC) and procoagulants, incorporation of new technologies in IBDs, and education of caregivers, patients and their families. We showed that the policies implemented promoted an increment in the registration and diagnosis of people with IBDs, the institution of a more transparent and cost-effective system for the procurement of CFC and procoagulants (including increase in the portfolio of products and quantities purchased), reduction in the prevalence on anti-factor VIII inhibitors, progressive increase of people with hemophilia under prophylaxis, better qualification of caregivers, patients and families and, maybe, reduced mortality of people with hemophilia. The IBDs Program implemented in Brazil is a real-life example of a successful public health policy in a lower-middle income country and may serve as a model for IBD care to other countries with similar economies.