Background: It is estimated that 12 000 people in Indonesia experience OI, yet only 35 patients diagnosed with OI until September 2013. It portrayed many under-diagnosed and misdiagnosed OI cases. The limited number of diagnosed OI cases made the management not prioritized and aggravated the lack of awareness of OI. As a consequence, zolendronic acid (ZA), the drug of choice in treating OI in the world, had not yet registered on the list of national essential drugs.
Objective and Hypotheses: To improve awareness and the number of diagnosed cases of OI; to have ZA as the drug of choice, covered by the national health care insurance, and included in the national guidelines.
Method: Indonesian Paediatrics Society (IPS), working together with Caring and Living as Neighbours (CLAN, Australia), and Royal Children Hospital (RCH, Australia) generated educational courses for the patients and the family, paediatricians, and medias in November 2013. They also established a family community of OI, FOSTEO.
Results: Within just 3 months, the registered OI patients raised up to 70. ZA has been used as the choice of treatment in the national hospital, Cipto Mangunkusumo Hospital (RSCM), with rigorous monitoring and scheduled treatment. ZA has also been included on the list of drugs covered by the national health insurance. 26 patients treated with ZA in RSCM since January 2014.
Conclusion: Although there were a lot of improvements on the management and OI awareness, there are still disparities and inequalities on OI medication access in every region in Indonesia. Accurate understanding is needed in the health care system in order to maintain the compliance of the treatment. We decided to make a new protocol on OI treatment in the health care system. With the presence of FOSTEO, we imposed sharing system of the drug, that every patient will get treated equally.
20 - 22 Sep 2014
European Society for Paediatric Endocrinology