Thalassaemia International Federation (TIF)'s work in the South East Asian Region (SEAR) and the Western Pacific Region (WPR)
(as grouped by the World Health Organization - WHO)
The Thalassaemia International Federation (TIF), committed to its mission since its establishment in 1986, works in every direction to promote equal access to quality health and social care to all patients across the world.
The different challenges in addressing multi-organ, multidisciplinary, chronic disorders such as thalassaemia and sickle cell disorder are many and multiple in each region of the world. On many occasions, these challenges are heterogeneous even within the same country, and across countries of the same region. However, they are broadly divided into the challenges that the countries of the developing world are facing and those that the developed western world has to address.
The challenges in the western world revolve mainly around building infrastructures for these disorders and addressing them appropriately across different cultures, religions, and linguistic constraints, as these disorders were and still are literally introduced into the indigenous populations of most western and northern European countries through migration and population movements. The challenges in the developing world mainly from the South East Asian Region and the Western Pacific Region are focused around the lack of resources, low government expenditure on health care systems, patients’ out-of-pocket expenditure for obtaining health care services, the still to date great threats relating to communicable disorders, poverty, nutrition, and iron related anaemias.
Nevertheless, through its persistence and its continuous framed work, TIF has had a great impact in spreading awareness and sensitizing national health authorities in almost every country of the developing world and has succeeded in educating health professionals across different disciplines and most importantly the patients and parents communities in these countries.
The impact that TIF has had in this part of the world has been overwhelming and this constitutes one of the main reasons for TIF’s receipt of the World Health Organization’s (WHO’s) 2015 Dr Lee Jong-wook Memorial Prize, for its outstanding contribution to the field of public health and for its unique in many ways support to the patients/parents communities.
In most countries the education of health professionals has been one of the most important focus of TIF’s work and is one for which we can safely state that TIF has had a measurable level of impact and in particular on account of the Guidelines developed both for the Prevention and the Management of Haemoglobin Disorders – books that todate constitute reference material for medical specialists and scientists in the field across the world.
In addition, TIF has contributed to the development of patient/parent support groups for spreading community awareness and for supporting health professionals to advocate for better health care services for patients with these disorders.
Official Memorandums of Understanding (MOU) and agreements on joint projects on the promotion of prevention and management programmes have been signed between TIF and the health authorities of a number of countries in this Region, i.e. SEAR and WPR. These countries include the Democratic Republic of Chinaand two of its largest Southern states, the Guangdong and the Guangxi Provinces, as well as other Southern states.
The success has been great in this part of the world with the official inclusion of thalassaemia in the context of the birth defects programme while currently China is working closely with TIF to promote Guidelines on the management of these disorders, South China being one of the most prevalent to α and β thalassaemia.
Similarly, agreements for joint activities have been signed between TIF and other regions of the Indian sub-continent, namely, India, with joint projects in six of the states including Delhi, Maharashtra, Gujarat, Punjab, Madhya Pradesh, Uttar Pradesh, Haryana, and Chandigarh.
Considerable advances have taken place in the last four years as a result of this close collaboration with the state and central government of this country.
Additionally, considerable improvements have been made in the promotion of access to quality health care and other services to patients in Indonesia, a country with a very high prevalence of these disorders. The issuing of insurance for covering the cost of the treatment of patients and increasing the access of patients to life-saving drugs are among the greatest achievements accomplished in this country.
Earlier success has been noted inSri Lanka, one of our first models of success, and considerable focus has been given both to the prevention and care of thalassaemia as well as to the education of health professionals and the strengthening of research as well.
Similarly, in Malaysia, focus has been given to this disorder previously and there are many advances in both the area of prevention and care, despite the many other health care challenges that the country faces.
A recent successful collaboration has been initiated with stakeholders in Vietnam, a country with high prevalence of α and β thalassaemia, very strong academic infrastructure, and high rates of annual affected births. However, it is a country with national health systems similar to the rest of the region, were patients’ access to quality care and life-saving drugs is extremely limited.
We are also very proud to share with you that the 2nd Pan-Asian Conference has been conducted between 26-27 September 2015, in Hanoi, Vietnam with immense success! This conference was organized by TIF in collaboration with the prestigious National Institute of Hematology & Blood Transfusion (NIHBT) and its member national association, the Vietnamese Thalassaemia Association (ViTA).
This educational event was organized in the context of TIF’s educational programme and in particular in its focus on regional needs and expectations. Please click
here to read more about this event.
A Memorandum of Understanding (MOU) for joint activities for the period between 2016-2020 has also been signed, to strengthen patients/parents support groups, to work closely with the government and the health professionals’ community, to address challenges, and to build up infrastructures for better services both in the area of prevention and management.
In all of these countries, there is considerable space for further improvement and better coordination of services, and improving quality care, but above all improving the structure of health care systems in the reduction and if possible minimization of the patients’ out-of-pocket expenditure.
Countries that need further support and collaboration from TIF remain those with the lowest government expenditure on health, including Nepal, Bangladesh, and Laos. Despite the fact that work has been initiated and delegation visits have taken place in these countries, progress has not been able to take off in a coordinated and effective way, and under the recognition of the national health authorities.
In conclusion, TIF is a unique international, patient-oriented organization that has achieved tremendous advances in the field of haemoglobin disorders in regions of the world with huge challenges and many other health and social priorities.
We hope that the government of Cyprus will continue to support TIF in as many was as possible and particularly in its work in this part of the world.
We hope that, as TIF with the support of our valued stakeholders, collaborators, members, we will continue to strenghten this work towards achieving appropriate quality, health, social and other care for patients with these challenging, chronic diseases.
TIF strives for ensuring that the dramatic advances in the scientific and medicine achieved in the 2-3 decades and which have transformed the disorder from a childhood fatal one a chronic well-managed one will reach patients in these regions of the world.
The work of TIF brings Cyprus as a role model into the spotlight, exposing its successes, its challenges and the potential for new collaborations and networks both in the area of health and beyond.