World Celebrates International Thalassaemia Day Under Shadow Of Pandemic

The theme for the International Thalassaemia Day 2020 is ‘The dawning of a new era for thalassaemia: Time for a global effort to make novel therapies accessible and affordable to patients’.

The International Thalassaemia Day, commemorated annually on the 8th of May, will be celebrated by the Thalassaemia International Federation (TIF) along with the global thalassaemia patient community as scheduled, on Friday 8th May 2020, in the shadow of the coronavirus pandemic that is gravely affecting the entire planet.

The annual 8th of May celebrations are dedicated to raising awareness and sensitising public opinion, health authorities and policy makers on the issues that affect our patients across the world, and the efforts that are required to meet their needs in all the aspects related to this disease. These needs include prevention, blood adequacy and safety, access to quality care, social integration, but also access to research and new therapeutic approaches.  

… for the first time in its history since 1994, the celebrations on the 8th of May for the International Thalassemia Day will take place solely online through a series of virtual and digital activities

This year the theme for the International Thalassaemia Day 2020 is ‘The dawning of a new era for thalassaemia: Time for a global effort to make novel therapies accessible and affordable to patients’. This seeks to reflect on remarkable progress achieved in the last few years by scientific research in the field of haemoglobinopathies, and more specifically in thalassaemia.

It is of course notable that as a result of the scientific and medical progress which has occurred over the past decades, patients who receive appropriate holistic clinical care, including blood transfusion and iron chelation therapy, can enjoy a good quality of life with minimal disease-related complications. This achievement has of course been complemented by the continuing efforts of patient organisations like TIF, its member associations, and generally the global thalassaemia patient community. Nonetheless, in countries with frail healthcare systems that have not fully implemented the principles of Universal Healthcare Coverage, the approximately 500,000 patients born every year with thalassaemia and sickle cell disease are suboptimally treated and subsequently many of them die prematurely before their 15th year of age, due to untimely diagnosis and unequal access of appropriate and quality care.

The remarkable scientific advances which have arisen, mainly in the last 2-3 years, are thus leading the clinical management of thalassaemia into a new era. The most prominent examples right now include the recent positive opinion of the European Medicines Agency (EMA) for the innovative drug ’Reblozyl (luspatercept-aamt)’ and the conditional approval of the first ever gene therapy for thalassaemia ’Zynteglo’, both of which will change the history of the disease and radically alter the lives of patients.

In his message for this year’s International Thalassaemia Day, TIF’s President, Mr Panos Englezos, states: ‘A new era for thalassaemia has finally arrived, bringing us closer than ever before to the total cure of the condition. At the same time, this new era presents new challenges which have to be addressed. It is imperative that ways and means are found so that as many patients as possible have access to these novel treatments and drugs’.

The Federation’s Executive Director, Dr Androulla Eleftheriou, added the following: ‘Broad and wide accessibility of patients to these drugs and therapies necessitates increasing their availability, through increased production, but also very importantly a reduction of their costs, frequently unbearable for patients even in high income countries. TIF, in coordination with its member associations, has already taken steps that aim to sensitise governments, decision-makers, and the pharmaceutical industry and very importantly to advocate for human and patient rights for equity of care. This is a major pledge which we must succeed.’    

Consequent to the uncharted repercussions of the COVID-19 global pandemic, and seeking to prevent the further dispersion of the coronavirus, for the first time in its history since 1994, the celebrations on the 8th of May for the International Thalassemia Day will take place solely online through a series of virtual and digital activities. In this context, TIF has organized a variety of activities that include digital informational material on thalassaemia, media toolkit, and webinars in line with this year’s theme, as well as interactive digital photo and story competitions for patients, and more.

For more information, visit:

https://thalassaemia.org.cy/media-centre/news/international-thalassaemia-day/

and TIF’s social media: https://www.facebook.com/tif.thalassaemia/ 

and https://twitter.com/thalassaemiaTIF

LIFE WITH AND WITHOUT THALASSAEMIA

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