We are going through a year of historical importance as far as thalassemia is concerned, says a statement from the International Thalassemia Federation
In Cyprus, the estimated number of patients with hemoglobinopathies is around 1,400, including 697 with beta-thalassemia major, and 104 with beta-thalassemia intermedia, the International Thalassemia Federation (ITF) says in a statement on the occasion of World Thalassemia Day.
In Greece, 8% (1 in 12) of the general population is a β-thalassemia carrier, with some areas the frequency of carriers reaching 15%-20% of the population. The trend in both countries, it is noted, is increasing due to intensified migration flows from areas where the disease is endemic.
Panos Englesos, President of the IOTH, states that although the medical world has made leaps and bounds in the treatment of thalassemia, access to even basic care remains limited for countless people.
The global coordinated movement for thalassemia is calling this year on all stakeholders and the wider society to join forces and break down the barriers that make it difficult for people with thalassemia to have equal access to all available, approved and safety-tested treatment options , in order to benefit from the achievements of scientific innovation and to preserve their right to continuous progress in their health and quality of life.
We are going through a year of historical significance in terms of thalassemia, the announcement states, since the impressive progress in the field of innovative, transformative treatments is finally transformed into practice with the licensing of two gene editing and holistic treatment products for this specific disease by the relevant regulatory authorities authorities in Europe and America, respectively, which create reasonable hopes for its radical treatment. At the same time, other innovative products are in advanced phases of clinical trials and will soon be completed.
Inspired by these important developments, the theme of World Day 2024, “Empowering Lives, Supporting Progress: Equitable and accessible thalassemia treatment for all”, highlights the critical need for a joint effort to guarantee patient access to all the safe and approved treatments to manage thalassemia.
This year's theme also highlights the importance of ongoing, coordinated awareness and advocacy efforts to achieve meaningful changes in the lives of those affected by this serious, chronic, inherited blood disorder .
Currently, it is estimated that 100 million people worldwide carry genes responsible for thalassemia, and approximately 300,000 infants are born each year with severe forms of the disease.
Panos Englesos, President of IOTH points out that in the context of the global recession, growing inequalities and geopolitical turmoil, World Thalassemia Day 2024 calls on governments everywhere to prioritize the health of people with thalassemia, ensuring that national infrastructure and services will make both basic and advanced care options available to every affected patient,” he added.
According to IOH data, 7 out of 10 people worldwide living with thalassemia today do not have access to regular, disease-specific health care, and this while the numbers of patients are constantly increasing, in the absence of prevention programs, and the appropriate management of the disease (blood transfusions, deironing, multidisciplinary care, etc.) remains a serious challenge for many countries, especially low- and middle-income countries, where large populations of people with thalassemia live.
“Enhancing access to existing and emerging, innovative treatments requires collaborative solutions developed with all key stakeholders: the pharmaceutical industry, health regulators, healthcare authorities, healthcare providers, and most importantly, patients and families them”, says Dr. Androulla Eleftheriou, Executive Director of IOTH.
Celebrating World Thalassemia Day and endeavoring to highlight the importance of the disease as an important public health issue with global dimensions, IOH has prepared a number of online activities, which include the massive international Awareness Campaign 'Get Informed. Share. Be aware” – #ΒeAwareShareCare with rich informative and promotional material in 15 languages.
The day will be celebrated in more than 120 countries, where there will be many awareness events, blood donations, road races, educational activities, scientific meetings, conferences, etc., with the participation of both the IOC and many other organizations.
Furthermore, the #BringThalToLight initiative will encourage global solidarity by lighting up iconic landmarks, monuments and buildings in over 50 countries in red , including Cyprus and Greece. This dazzling display aims not only to raise awareness among the general public about the condition and its impact on patients and society, but also to pay tribute to those living with thalassemia worldwide.
