Delegation Visit to Romania – 24-25 March 2016

Romania has a relatively low prevalence of thalassaemia. However, there are about 200 patients with thalassaemia major. Patients receive free of charge treatment – blood transfusion and chelation therapy. They have to come to Bucharest to be treated, because few hospitals around the country can manage thalassemia.

Prompted by various personal communications from patients raising their concerns with regards to their treatment, TIF organised a delegation visit in this country between the 24th and 25th of March. The delegation comprised of Dr Michael Angastiniotis, TIF medical advisor, and Dr Christina Stephanidou, a patient, medical microbiologist by profession, and TIF board member representing Greece. The aim of the visit was (1) to get a representative evaluation of the current situation pertaining to the treatment of thalassaemia and, (2) having assessed the situation, to discuss and jointly develop an action plan for Romania with all involved stakeholders (patient leaders and medical professionals).

Through the various discussions, it became apparent that the benefits from the advances that have occurred in Romania in recent years are hampered by some weaknesses in the system, which need to be addressed
appropriately so that patients with haemoglobin disorders would enjoy a much improved quality of life. Consequently, all stakeholders agreed to collaborate closely with TIF in order to encourage the national health authorities in the following:

1. Instigating improvements in non-remunerated blood donation practices in order to increase the blood
supply;
2. Advocating for the inclusion of thalassaemia in the rare disease programme;
3. Establishing a national patients’ registry that will assist national health authorities’ efforts in developing
more effective and efficient planning of services and associated budgets; and
4. Implementing a national prevention programme for thalassaemia in an attempt to minimise new affected
births.

In addition, it was also noted that patients need to strengthen their knowledge of their disease and be aware of the new advances. It was, therefore, recommended that patients should be encouraged to visit and participate on TIF’s electronic educational platform. Based on the preceding information, a detailed plan of action for Romania was developed and agreed upon; it is currently in progress.