A delegation visit (5-7 May) was organised at the request of the Thalassaemia China Federation, on the occasion of the 8th of May celebrations.
The province of Jiang Xi was chosen because thalassaemia is of relatively low prevalence and patient support groups feel isolated and poorly supported. The TIF Delegation which supported the Thalassaemia China Federation (TCF) on this tour of the province, included Dr Michael Angastiniotis (TIF Medical Advisor), Mr Loris Brunetta (TIF Board Member) and Dr Andreas Polinikis (Consultant on health systems development).
The local situation was reviewed and discussed with health and other authorities and the role of charity organisations such as Angel Mom, as well as reviewing the current situation in China with the TCF. The need to better support families was emphasised.
The primary goals for thalassaemia management in China, are the need for universal insurance coverage and the need to develop a system of reference centres, which can support secondary centres, following national guidelines which are still to be agreed. The issue of health coverage is part of a national review of health policy but, nevertheless, in the case of lifelong diseases like thalassaemia is now a matter of urgency, since many patients are not receiving the basic care that they deserve. TIF and TCF, are in continual communication, and have arranged a meeting at the international Conference in Thessaloniki in November for an update of current developments.
China has all the academic and research opportunities to make major steps and huge advances in the control of this disease.
Collaboration between TIF and the Beijing Angel Mom Charity Foundation
For the past few years, TIF has been working closely and forming close relationships with Beijing Angel Mom Charity Foundation on thalassaemia-related matters in China.
China’s President Xi, Jin Ping, promoted a new policy last year to develop an ‘economic belt’ to benefit countries along the ancient Silk Road. Now, this policy has expanded its horizon to a global scale. Not only, it aims at strengthening global economy but also engages in global philanthropy.
In light of the recent funding programme announced by the Chinese Government, aiming to financially support projects involving countries of the ancient Silk Road, TIF and the Beijing Angel Mom Charity Foundation have taken the initiative to draft and submit a proposal for the benefit of countries affected by the disease, aiming to bring progress in the areas of thalassaemia training and medical support for thalassaemia families. TIF will act as a special medical consultant for the Beijing Angel Mom Charity Foundation to carry out this mission for the benefit of thalassaemia patients globally.
The “Belt and Road Thalassaemia Alliance” was formally established during the International Thalassaemia conference in Thessaloniki 2017.
What is the Thalassaemia belt?
Formerly, the distribution of thalassaemia had been mainly limited to areas from the Mediterranean basin through the Middle East and Indian subcontinent up to Southeast Asia. This is the so-called “thalassaemia belt”, a belt around the earth that includes countries with high prevalence in thalassaemia.
What is the Silk Road?
The Silk Road or Silk Route was an ancient network of trade routes, which were for centuries central to cultural interaction, originally through regions of Eurasia connecting the East and West and stretching from the Korean peninsula and Japan to the Mediterranean Sea. The Silk Road concept refers to both the terrestrial and the maritime routes connecting Asia with Africa, the Middle East and southern Europe.
How do the two come together?
The “Thalassaemia Belt” and “Silk Road” concepts have a significant number of countries in common that are in need of support regarding the prevention and clinical management of thalassaemia.