Integrated thalassaemia and haemophilia care at RS Universitas Airlangga, Indonesia
At RS Universitas Airlangga in Surabaya, Indonesia, the joint thalassaemia and haemophilia clinic brings diagnosis, treatment, monitoring, and patient support into one coordinated pathway. Established in 2022, the clinic has grown into a critical regional referral centre for patients across East Java.
The challenge in East Java
East Java is home to an estimated 600–700 people living with thalassaemia and around 550 people living with haemophilia. Caring for both conditions depends on consistent, long-term follow-up, regular monitoring, and close coordination across clinical teams. When that coordination is missing, services can become fragmented, leading to repeated referrals, gaps in continuity, and disruptions that affect treatment adherence and quality of life.
How the integrated clinic took shape
The clinic at RS Universitas Airlangga has evolved over several years, with NNHF project activities expanding in 2024 to support a more connected way of working across diseases areas. Since 2025, the clinic’s comprehensive, integrated model – covering both haemophilia and thalassaemia for paediatric and adult patients – has been strengthened and fully implemented.
Further NNHF project activities include strengthening the integrated care component of the clinic and providing training for healthcare professionals. This support helped the team move from parallel services toward a more coordinated pathway across conditions and across age groups.
A key milestone was the addition of a paediatric specialist in late 2025, which allowed the service to expand to children and integrate care more fully across childhood and adult follow-up.
One clinic, one coordinated pathway
Care is delivered by a multidisciplinary team combining internal medicine and paediatric expertise, supporting patients from diagnosis to long-term follow-up and helping maintain continuity from childhood into adulthood.
The team aligns clinic schedules, shares decisions across specialties, and connects with hospital leadership, national stakeholders, and patient communities. As a result, patients experience one joined-up service rather than separate appointments and teams. They benefit from shorter waits, fewer duplicated services, clearer communication, and more consistent care pathways.
Behind every treatment journey is a person trying to go to school, work, care for their family, and plan for the future. Our responsibility is to make care feel less overwhelming, so patients and families know they are not facing their condition alone,
Patients and families report feeling more supported, medically and emotionally, contributing to stronger adherence and improved quality of life.
More than a clinic
The clinic’s impact shows up in practical ways, both in the consultation room and in the wider community. The hospital team regularly runs education and support sessions for patients and their families, helping them understand their condition and how to manage it over the long term.
As a result, patients are becoming more engaged in their care, reflected in more consistent attendance at follow-up visits and better adherence to treatment. Families are also more involved, which is vital in supporting patients through long-term therapy.
Beyond individual care, the clinic has helped build stronger communication and support networks, between patients and healthcare providers and among patients themselves. Through collaboration with patient organisations such as HMHI East Java, the team has supported the development of a patient registry and holds regular regional meetings that strengthen connections, provide ongoing education, and offer health screenings.
Outlook
Next steps include a phased training programme for healthcare professionals in rural districts, covering both haemophilia and thalassaemia. The team also plans to hold regular awareness and skills-building sessions for healthcare professionals and emergency personnel, while continuing to improve early detection through wider screening programmes across East Java.
In parallel, regional advocacy with national health insurance system (BPJS) is ongoing to ensure RS Universitas Airlangga is recognised as a hospital authorised to issue referrals for patient treatment.
