Decentralising basic haemophilia care across four Indonesian provinces
Indonesia is comprised of over 17,000 islands. For people with haemophilia living in East Nusa Tenggara, West Kalimantan, West Sumatra and Papua, accessing care and treatment could mean travelling to provinces located up to 3,700 km away.
The NNHF’s third Indonesia project, led by Dr Novie Chozie, strengthened basic haemophilia care and diagnosis in these provinces. Building on earlier NNHF projects in the country, this project focused on widening access at the primary-care level, raising awareness, and empowering patients and local providers.
Key achievements:
- Direct beneficiaries: 129 people with haemophilia reached through services and outreach.
- Local care established: Basic haemophilia services were set up in all four provinces, cutting travel time for patients and bringing diagnosis and treatment closer to home. In Kupang (East Nusa Tenggara) five people were newly diagnosed where previously there had been none, and hospital management has begun procuring reagents and factor treatment.
- Workforce training: In February 2025, four provincial paediatricians completed two weeks of specialist training at Ramathibodi Hospital, Thailand. Across the four provinces, 329 healthcare professionals received haemophilia awareness and practical training, covering self-infusion education for nurses, basic and factor assay diagnostics for laboratory staff, and physiotherapy and clinical examination for therapists.
- Strengthened laboratory capacity and funding: M Djamil Hospital (West Sumatra) can now perform PT, APTT and factor VIII/IX assays and has started procuring reagents. In West Kalimantan, the centre has allocated local budget for haemophilia diagnosis and is funding shipments of advanced tests to Jakarta where required.
- System-level engagement: Each outreach visit included meetings with hospital and provincial health authorities to support implementation of care and diagnostic services. The project worked with provincial health leaders to share information via referral networks and primary-care clinicians. In line with national guidelines, teams promoted forming multidisciplinary care groups, submitting regional factor purchase plans to insurers, and maintaining reagent supplies.
Capacity building and community empowerment The project combined clinical training with community and system approaches: clinicians now cascade new skills locally, nurses and patients are learning self-infusion, and provincial authorities are increasingly committing resources. These measures improve continuity of care and enable patients and families to manage haemophilia more effectively.
“Before this project, people living with haemophilia in Papua would travel to Jakarta for treatment – that is a 3,700km journey” said Dr Novie Chozie, NNHF project partner. “Through the decentralisation, basic care is now available closer to where patients live. Their quality of life improves as they have access to regular consultations, which was previously not the case.”
Next chapter: a focused follow-up to close gaps and scale impact
Despite strong progress since NNHF’s first Indonesia project in 2012, care levels still vary across provinces. A national meeting in Jakarta (August 2025) convened healthcare leaders, Ministry of Health and national insurance representatives to agree priorities for standardising care and implementing prophylaxis. Agreed next steps will focus on a concrete action and advocacy planning, clarifying national and provincial responsibilities and addressing remaining gaps in diagnostics, reagent supply and sustainable financing.
