Empowering people with haemophilia on the journey to self-management

Accessing medical care in the world’s biggest island country can be challenging at the best of times and especially so during a global pandemic. People living with haemophilia in Indonesia, spread across 17,000 islands and inland seas, need to be able to self-infuse treatment in case of a bleed. To achieve this, the second project supported by the NNHF in Indonesia is focusing on education in self-management of bleeding disorders for healthcare professionals (HCPs), people with haemophilia and their families.

Novi Riandini, one of the founders and an active volunteer of the Indonesian Hemophilia Society, explains: “Despite the fact that early on-demand factor treatment has been available from our national healthcare system, few people with bleeding disorders were able to benefit from the opportunity. The journey to achieve this is two-fold: first, our healthcare professionals  must be aware of this option and support the community in building knowledge and empowerment to manage this care model; secondly, people with haemophilia and their families need training to learn how to transport and store treatment correctly, spot bleeds and self-infuse.”

The project team realised that self-infusion training could be life-changing, leading to better management of bleeds, fewer hospitalisations per year and reduced risks of disabilities. For many young people with bleeding disorders, it also opens the door to a more independent life.

“We have been living with Reka’s severe haemophilia A since he was a young child,” says Dian Diana, whose 17-year-old received self-infusion training at one of the workshops delivered by the project team in 2017. “It means so much to me as a mother to see my son become more independent and be able to pursue his dreams instead of spending hours travelling to the clinic to receive treatment.”

Indonesia has been particularly hard hit by COVID-19 with around one million cases at the end of 2020. A dedicated donation was granted by NNHF to enable the procurement and distribution of personal protective equipment.

Key project activities in 2020 included emergency care training for healthcare professionals and education for the community about self-management of haemophilia in Yogykarta, Semarang and Makassar. The next step is in-depth training by the multidisciplinary care teams based in Jakarta for the expanded network of ten treatment centres — but this has been delayed due to the pandemic. In the meantime, the team are working on a self-infusion video tutorial that will help provide remote training and support for people with haemophilia and their families.

Back to the Year in review 2020