Multistakeholder Meeting on Gene Therapy for Thalassaemia Patients_Greece

On 20 July 2020, a multistakeholder meeting was initiated by Dr Vassilis Kontozamanis, Greek Deputy Minister for Health, to discuss implementation of gene therapy Zynteglo for a cohort of Greek thalassaemia patients.

Dr Androulla Eleftheriou, TIF Executive Director, and Dr Michael Angastiniotis, TIF Medical Advisor, participated in the discussion on behalf of TIF, whilst other participants included Dr Ersi Voskaridou, Mr Vassilis Dimos, Ms Eleni Michalaki, and Ms Vana Myrilla, representatives of the Greek Thalassaemia Federation (EOTHA), Prof. Evangelia Yannaki, Haematologist, Leader of GT trials in Greece, and representatives from the Greek National Organisation for Medicines (EOF), and the National Organization for the Provision of Health Services (EOPPY).

Dr Voskaridou provided an overview of thalassaemia and a description of the care infrastructure in Greece, and Prof Yannaki described the results of 2 Greek thalassaemia patients who have undergone gene therapy at the G. Papanicolaou Hospital in Thessaloniki and are now in long-term follow up. Subsequently, Prof Yannaki mentioned that gene therapy procedures are performed in bone marrow transplantation centres, which have the necessary specialized equipment and staff expertise. Thus far, the focus of these centres has been on malignant disorders, and given the limited capacity (in personnel and beds) of these centres, patients with life-threatening malignancies will always have a priority over those with a chronic, benign haematological disease like thalassaemia.

Dr Voskaridou and Mr Faropoulos both emphasized that the national prevention programme should not be undermined despite advancements in therapy for thalassaemia. Prof. Yannaki and Dr Voskaridou jointly agreed that approx. 300 patients in Greece would meet Zynteglo criteria (over 12 years of age and genotype).

Taking into consideration the minimum criteria for Zynteglo, a Committee of thalassaemia experts should come together to decide:

  1. Maximum age of eligible patients
  2. How to prioritize patients (start with those who don’t have a compatible BMT donor? à EOTHA is against this as they feel the ‘ageing’ patient should be targeted prior to the development of serious complications and thus enable life expectancy)
  3. National criteria for patient eligibility for Zynteglo

EOTHA voiced its position that a number of GT should be decided by the MoH in a stepwise approach (e.g. per year).

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