TIF Medical Advisors, Dr Michael Angastiniotis and Prof Suthat Fucharoen, were invited by the Indonesian Haematology Society to its annual conference, which took place in Jakarta on the 8th-10th of December 2016, in order to present aspects of thalassaemia control. The opportunity was taken to review the current situation in the country, as far as services for thalassaemia are concerned. To this end, after the conference the team, accompanied by Prof Djumhana, President of the Haematology Society, and Dr Amalia Wahidiyat, Head of the Thalassaemia Centre at CIPTO hospital, visited officials in the Ministry of Health and had fruitful discussions. Also, the new thalassaemia centre was visited and there was a meeting with the Thalassaemia Association (Yayasan/ POPTI).
The main meeting was with the Health Minister’s special advisor, Prof Akmal Taher, who explained that with the implementation of the National Health insurance scheme, which offers universal coverage, thalassaemia stood out as one of the economically catastrophic’ diseases. It is proposed the formation of a National Commission to formulate a National Policy and advise the Ministry. TIF will continue to follow developments and offer any technical support that the Commission may request. TIF has also encouraged the Association to monitor progress and be an active advocate for change.
Indonesia is a large island country with a high frequency of thalassaemia genes, the distribution of which is not homogeneous. TIF has collaborated with the patient support associations for many years, as well as with medical professionals. The quality of patient care is influenced by the insurance support and the need for out of pocket expenses. Recent reforms in the insurance system have been beneficial, since universal health coverage has been adopted. The need for a national policy on both prevention and patient care needs to be promoted.