Management of inhibitors extends beyond clinical treatment of inhibitors, even with new treatment options available! Being a rare condition within a rare condition that generates a considerable amount of isolation and unexpectedness, inhibitor management unequivocally requires support such as specialist nursing care, individually tailored physiotherapy, psychosocial support, advice on employment and social security benefits, as well as maintaining healthy relationships.
Following a series of multidisciplinary meetings and a review of the literature, the European haemophilia community of health professionals and patients jointly defined practical optimum standards for ensuring and harmonizing treatment and care for patients with an inhibitor. As a result, ten complementary principles for the management of inhibitors in haemophilia have been developed, emphasizing the importance and benefits of a centralized, multidisciplinary, expert and holistic approach.
The European Principles of Inhibitor Management were published in Orphanet Journal of Rare Diseases (OJRD) on 27 April 2018. Following the advent of novel treatment options for people with inhibitors, the revised version of the article was published in OJRD on 24 August 2020 – European Principles of Inhibitor Management: implications of new treatment options.
These documents will serve as a benchmark to improve the multidisciplinary and practical management of patients with inhibitor. Implementation and adherence to each of these principles should have a major positive impact on the management and outcomes of patients developing an inhibitor.
In addition to the published articles, the EHC has developed a set of materials for the use of its NMOs. These materials are meant to be tools that serve our membership in their advocacy work to receive the treatment and care outlined in these principles and that their inhibitor membership is entitled to!
Not only are new treatment options not yet widely accessible, but ITI or bypassing agents are often not available as options in many EHC NMO countries, let alone other elements of comprehensive care. We hope that these advocacy materials will help you gain access to these elements in your countries, or at least be the start of proactive dialogue!
Please watch the video to its conclusion for the latest up-to-date information.
These materials are available from EHC for use in your countries and NMOs. Please request the video and transcript for subtitles, as well as the editable versions of the printed materials by writing to EHC Community Programmes Officer Kristine Jansone (firstname.lastname@example.org).