International Thalassaemia Day: Learn more
The 2023 Theme
The International Thalassaemia Day 2023, highlights the empowering force of education and its association with appropriate and quality care of this disorder.
Building on last year’s successful theme, the 2023 campaign’s theme, ‘BE AWARE.SHARE.CARE.: Strengthening Education to Bridge the Thalassaemia Care Gap’, takes a further step ahead and focuses on the need for improved access to quality, lifelong thalassaemia education for people living with the disorder and healthcare professionals involved in their care.
Effective advocacy for the strengthening of existing, or the development of new, disease-specific healthcare policies, infrastructure, services and therapies can only be achieved through a meaningful and productive dialogue between all involved stakeholders – patients and families, healthcare professionals, health authorities/decision-makers.
An undeniably imperative component for all stakeholders is education, through which lasting and effective changes in health and social behaviours can be achieved, as well as improved health outcomes, quality of life and social integration, and reduction of the huge national disease burden thus positively impacting the resilience and sustainability of national healthcare systems in the long term.
Numbers speak for themselves[1] on why disease-specific education should be further promoted. Today, still:
More than 70% of patients with β-thalassaemia globally receive suboptimal basic care in terms of blood transfusion and iron chelation therapy.
More than 75% of patients with thalassaemia in low-and middle-income countries (LMICs) experience blood insufficiency.
In more than 90% of countries with medium- and high-thalassaemia prevalence, patients rely on out-of-pocket expenses to cover necessary healthcare costs.
Nearly 90% of the patient population worldwide has no access to multidisciplinare care and expert/reference centres.
This situation leads to high rates of complex morbidities and premature death for many affected individuals.
Moreover, such facts clearly violate basic human rights, opposing to internationally adopted WHO and UN declarations and resolutions.
We need to help change that!
People living with thalassaemia need access to ongoing, disease-specific education to better understand their condition and assert their basic right of equal access to appropriate care.
Thalassaemia treating physicians must know how to detect early and accurately diagnose the condition in order to interact effectively with competent authorities and provide patients with the best possible care.
[1] Global Thalassaemia Review. TIF Publication (2022).
Poor Education = Poor Health
Against a backdrop of global recession, growing inequalities and strained post-pandemic healthcare systems, on the occasion of the International Thalassaemia Day 2023, TIF calls for the health of thalassaemia patients to be prioritized ensuring that national infrastructures and services make basic and advanced therapeutic options available for every patient.
Echoing and aligning with the UN’s SDGs and in particular, goal Goal n.4: Quality Education, we firmly believe that this can only be achieved with good quality education for all stakeholders on the specific needs of thalassaemia patients.
After all, education is the foundation of health and well-being, and a catalyst for bridging the care gap and bringing forth development in health interventions.
Poor education of patients with regard to their condition has been associated with non-adherence to treatment plans and medical regimens, poor patient self-care, high health-care costs, and increased risk of hospitalization and mortality.
Lack of continuous, disease-specific education and training of healthcare professionals can jeopardize the provision of timely and appropriate care to patients, especially those with chronic conditions, such as thalassaemia, and the improvement of the health and well-being of their communities.
Together we can and must FIGHT to change that!
Education for a better tomorrow
The International Thalassaemia Day, marked on May 8, is a unique opportunity to help people with the condition live healthier, longer, and more productive lives by empowering them through knowledge sharing, information exchange, quality thalassaemia education, and training.
Whoever and wherever you are, you have the power to reduce the impact of thalassaemia for yourself, your loved ones and the whole world!
This 8 May show us that you are AWARE and that you CARE to support patients in your community. Improve your thalassaemia knowledge, SHARE information, experiences, and stories on social media, involve your treating physicians and nurses, work with schools, professional, religious, or cultural fora in your country to spread awareness on the disease and the patients’ unmet needs, contact your local newspaper and other media to spread your story, position, and make yourself widely heard.
Join the International Thalassaemia Day 2023 movement and help transform the lives of millions of people with thalassaemia across the world!
#ITD2023 #BeAwareShareCare #CareForEducation #EducationForCare
