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New injectable drug that reduces the need for frequent transfusions raises hope for thalassaemia patients

Video transcript in English

Good news for patients with Thalassaemia (or Mediterranean Anemia) in view of a *new injectable drug that reduces the need for frequent and lifelong blood transfusions.   According to the patients, this means that their quality of life will be greatly improved. For example, a thalassaemic patient needs to be transfused approximately every 15 days. By taking this injectable medicine every 3 weeks, the patient will prolong the duration of the effect of blood transfusions.

With the increase in life expectancy of patients with Mediterranean Anaemia, new risks are emerging, such as an increase in the number of neoplastic diseases, and therefore monitoring and equal access to treatment for all patients are considered essential.

“What we are interested in is effective quality care, equal access to care, but also to drugs, regular monitoring and, of course, sufficient blood. Of course, this issue is very important because you understand that when the transfusions are postponed, the patients’ program is deregulated”- said the President of the Greek Thalassaemia Association, Mrs. Stella Mina.

* By “new injectable drug”, Mrs Stella Mina is referring to Luspatercept.

Also discussed:

The importance of patient advocacy

Video transcript in English

“Patients need to be able to co-decide with their doctors about their treatment and quality of life”, said the Director of the Thalassaemia International Federation (TIF), who visited Thessaloniki on occasion of the Congress of the Greek Thalassaemia Association. For this purpose, a special workshop titled “Train the Trainers” was held to educate patient leaders.

“Not only treatment but also their quality of life should be taken into account and, to achieve this, the patients must have equal participation in decision-making centres. They need to be constructive and equal partners. And to be able to do this effectively, they need to go through a series of steps: Patients need to be trained, to know how to advocate and how to claim” said the Executive Director of TIF.

TIF represents 207 patient associations from 68 countries in the world.