This Year’s Theme
Empowering Lives, Embracing Progress: Equitable and Accessible Thalassaemia Treatment for All
The Power of International Thalassaemia Day
Building on the unique momentum created by ground-breaking cell and gene-based therapies in the haemoglobinopathies field and the recent approvals of such therapies in the US, the UK and the EU, the 2024 theme underlines the timely need for a unified approach in addressing the patients’ right to access all available, approved, and safe treatment options—regardless of cost—and achieve the best possible quality of life.
The theme also conveys the message of empowering individuals affected by thalassaemia through advancements in treatment options, while emphasizing the need for continued and collective awareness and advocacy efforts to bring about meaningful improvements to the lives of everyone affected by this genetic condition.
Treatment Landscape
From Standard Care to Transformative Therapies
Standard treatment
Thalassaemia is a genetic blood disorder that affects the body’s ability to produce haemoglobin, resulting in varying degrees of anaemia, fatigue, and other complications. The severity of the condition depends on the type of thalassaemia, making expert care crucial for effective treatment and management.
Currently, the cornerstones of treatment for clinically significant thalassaemia involve regular, life-long blood transfusions, iron chelation therapy, and multidisciplinary care delivered by medical professionals of various specialties. Despite some improvements over the last decades, the provision of appropriate thalassaemia care remains still highly heterogeneous and is often lacking across and within regions of the world due to multiple factors, leading to patients’ needs not being adequately addressed.
Innovative Treatments
In the past few years, notable advancements in science have yielded innovative medicinal products, such as novel drugs and gene and cell-based therapies that are shifting the landscape of thalassaemia treatment and offer newfound hope for patients affected by this condition to substantially improve their quality of life and, in some cases, be permanently cured.
These treatments, however, come with significant challenges. The logistical complexities of novel and transformative therapies, their hefty costs, the limited understanding surrounding such treatments (mechanism of action, value, etc.), social considerations, and bureaucratic hurdles within many national healthcare systems may delay their integration and reimbursement and affect availability for those in need.
Access to Therapies
A HUMAN RIGHTS’ ISSUE
Access to affordable medicines and therapies represents a universal human right and a significant target included in the Sustainable Development Goals (SDGs) of the UN. Ensuring that innovative treatments and cutting-edge healthcare technologies become available equitably and promptly is vital. Such access must guarantee that everyone, without discrimination, has a fair opportunity to receive them safely and effectively.
Nonetheless, in the case of thalassaemia, equitable access involves not only innovative treatments but also conventional ones, particularly in low- and middle-income countries where the disease is most prevalent and where millions of people still lack essential, disease-specific care, thereby violating their rights to timely and appropriate healthcare.
Improving access to existing, novel and future therapies alike requires solutions developed in partnership with everyone who has a stake in their delivery; industry, health regulators, healthcare authorities, health care providers, payers, and, of course, patients.
While innovations in healthcare hold the promise of greatly improved health outcomes, these also can lead to the risks of deepening inequalities and the development of new forms of discrimination and marginalization Dr. Androulla Eleftheriou
TIF Executive Director
The time to act is NOW!
- Without education and training, some healthcare providers may overlook thalassaemia symptoms, leading to challenges for patients in receiving a proper diagnosis.
- Without adequate support, patients may struggle to manage their condition effectively.
- Without policies that support innovation, research falters and breakthrough treatments’ potential may remain untapped.
- And without governments’ investments in new medicines and therapies that recognise the wider added value, patients will be unable to access the care they need and the opportunities science and research are offering them.
WE CANNOT WAIT any longer for:
- Therapies, technologies, support, and care to be made available to all people with thalassaemia that require them.
- Governments to increase investments in healthcare, specifically focusing on thalassaemia care and prevention. Allocating resources to chronic diseases, especially genetic and hereditary conditions, ensures patients’ rights to a decent life and proper social integration
ABSENCE OF ACTION represents a severe violation of patients’ human rights. And EFFECTIVE ACTION requires sustained collaboration and synergies among all key stakeholders.
Let’s Unite
On May 8, 2024, the global thalassaemia community will unite to celebrate International Thalassaemia Day.
This event presents a unique opportunity to empower individuals with thalassaemia to lead healthier, longer, and more fulfilling lives by promoting equal access to effective treatment options and embracing advancements in thalassaemia care.
Patients, parents, caregivers, healthcare professionals, students, or friends; no matter who you are or where you are, you have the power to reduce the impact of thalassaemia for yourself, your loved ones, and the entire world!
This May 8th show us that you are AWARE of thalassaemia and that you CARE to support patients in your community. Learn more about the condition and the substantial progress being made in its treatment field. SHARE information, experiences, and stories on social media, to spread awareness on the disease and the patients’ unmet needs, and let YOUR VOICE resonate widely!
Join the International Thalassaemia Day 2024 movement and help transform the lives of millions of people with thalassaemia across the world!
#ITD2024 #BeAwareShareCare #TreatmentForThal #TreatmentForAll
International Thalassaemia Day is a global awareness day celebrating the thalassaemia community across the world and working towards equity in health, social and other care, as well as access to diagnosis and therapies for people living with thalassaemia.
International Thalassaemia Day is observed annually on May 8, in loving memory of George Englezos, the son of TIF’s President and Founder, Panos Englezos, and all patients who are no longer with us.
It was established and is coordinated by the Thalassaemia International Federation (ΤΙF) with the support of its 200+ member organizations and serves as a focal point to advance advocacy efforts for thalassaemia at local, national, and international levels.