On 18 February 2019 the Inhibitor Working Group (IWG) of the European Haemophilia Consortium (EHC) met in Lisbon, Portugal. A day before their annual meeting to plan the work of the European Inhibitor Network (EIN), members of the group – Christina Burgess (UK), Miguel Crato (Portugal), Prof Paul Giangrande (UK), Kristine Jansone (EHC Staff), Jim O’Leary (Ireland) and Teresa Pereira (Portugal) – visited two sites in Lisbon crucial for successful haemophilia care!
The first visit brought the IWG to the Haemophilia Treatement Centre (HTC) in Centro Hospitalar Lisboa Central or St Maria. The IWG was welcomed by Dr Alvaro Beleza, Director of Imuno-Hemoterapy Division, and lead in haematology Dr Cristina Catarino, who guided the group in a brief tour through the centre and showed the facilities available – the treatment room and lab, as well as a study room, where the medical students receive specialised information about haemophilia and its treatment. The IWG also had a chance for a brief exchange with the patients visiting at that point.
The working group then met with the team of the HTC – haematologists, nurses, as well as the medical interns currently doing their internships at the HTC. An introduction to the work of the center was presented by Dr Catarino, outlining the situation of haemophilia care in Portugal and the specifics of work of the HTC at Santa Maria Hospital. The level of care, including the care for patients with inhibitors, is very good and provides the various comprehensive care services, including home treatment, excellent nursing services, Immune Tolerance Therapy, surgery and physiotherapy. The work is still to be done to provide psychosocial support to the patients who might benefit from that.
The following presentation from the side of the EHC, outlined the objectives and work of the European Inhibitor Network (EIN), from its conception in 2015 to the work that is currently ongoing and envisaged for the near future. EHC Community Programmes Officer Kristine Jansone outlined the main elements of the EIN, such as Inhibitor Summit, online platform and Happy ½ Hour with an Expert, as well as the various materials produced. Special attention was dedicated to the European Principles of Inhibitor Management (EPIM) that have been produced and published in 2018 as a collaborative effort of multidisciplinary team of experts representing EHC and EAHAD. In addition to the scientific article published in Orphanet Journal of Rare Diseases, a patient-friendly materials, explaining the principles, have been produced. The working group proudly showed the video and presented the treatment centre team with a poster kindly translated into Portuguese by Teresa Pereira.
In the short discussion about implementation of the principles in Portugal, it was concluded that in many areas, the desired level of care is already in place, however in some other, such as psychosocial support, there is still progress to be made. It was highlighted that the patient education on various treatment options and components of the comprehensive care is crucial for this progress. The exemplary collaboration between the treatment centre and the Portuguese Hemophilia Society has greatly contributed to current status of inhibitor care and will doubtlessly secure the way forward.
In the afternoon, the IWG received a very warm welcome to the headquarters of the APH – Portuguese Haemophilia Society. Patricia and Cristina in the APH offices had provided wonderful Portuguese refreshments for the afternoon coffee that the IWG could enjoy together with the APH members that were attending the meeting. In a short tour through the APH offices, the IWG very much appreciated a small overnight facility where the patients coming into Lisbon from afar can stay if there is a need.
The IWG presented APH with the materials created for the NMOs to be able to reach out to the people with inhibitors and provide information about the inhibitor community on European level. A short presentation about the work of the IWG was given and its aspects more interesting to the NMOs were discussed. Also, the work of the APH with its inhibitor population was presented and discussion how to improve the collaboration on the European level took place.
The inhibitor Working Group was very inspired and motivated by those visits and is very grateful to the APH for this possibility and all the organisation!