The 1st International Informational Forum on Haemoglobinopathies, in the context of the TIF.ACCESS initiative, took place on 12 December 2019 at the TIF Headquarters in Nicosia, Cyprus.
For this meeting, a multidisciplinary group of stakeholders was invited, including the President of TIF, Mr. Panos Englezos, the President of the House of Representatives of the Republic of Cyprus, Mr. Demetris Syllouris, the President of the Cyprus Medical Association, Dr Petros Agathangelou, the Associate Professor in Pharmacy Education of the University of Nicosia, Dr Christos Petrou, patients with thalassaemia and sickle cell anaemia and patient representatives, distinguished healthcare professionals (general practitioners, haematologists, paediatricians, cardiologists, thalassaemia specialists), researchers, industry representatives and representatives of the Ministry of Health and its Pharmaceutical Services, the Health Insurance Organisation and the State Health Services Organisation
This meeting provided participants with the opportunity to learn more about new therapies for thalassaemia and sickle cell disease that have either been approved by the EMA or the FDA or are in the pipeline. All attendees agreed that this effort should take a specific form and structure at the national level to allow for more time for discussion and problem-solving.
Given the fact that a National Thalassaemia Committee is already in place, assigned officially by the government, it was suggested that a Working Group should be formed thereunder, with the participation therein of 3-4 attendees of the meeting. The said Working Group should provide support to the National Thalassaemia Committee for the development of recommendations regarding the access to innovative therapies of patients with haemoglobin disorders, which will be eventually submitted to the Ministry of Health for consideration and further actions.
There was a consensus regarding the need to find ways to reduce the prices of new therapies and also have more robust data on the long-term effectiveness of these products.