Shaping the future of haemophilia care in South Africa

By engaging youth in South Africa, this project grew to focus on developing an active haemophilia community across the continent.

Looking to the future

At the end of 2017 when the fourth NNHF supported project in South Africa started, the country had a sizeable specialist medical team and a strong patient organisation.

The project partners – the South African Haemophilia Foundation (SAHF) and its Medical and Scientific Advisory Council (MASAC) realised that the younger generation of people with haemophilia were less engaged with the patient organisation. Of particular concern, while there was a strong medical team across the country, younger doctors appeared less interested in haemophilia.

The project team knew that by preparing the next generation they would be shaping the future of haemophilia in the country.

Engaging young people

Firstly, young people with haemophilia were selected to play an active role in the patient organisation. They benefited from quarterly training in advocacy and project management with the intention of them representing not only people with haemophilia in South Africa but also in other countries. As a result, an African youth group of the SAHF was created to ensure a future for the organisation with a succession plan in place.

Providing specialised training

In addition to strengthening the capability of the patient organisation, the project team organised provincial training for healthcare professionals in Mpumalanga, Limpopo, Kwazulu Natal, Gauteng, Free State and Northern Cape. This involved training in basic haemophilia care, focused on awareness and identification of patients, as well as advance training for healthcare professionals already working with people with haemophilia. The aim was to increase the number of healthcare professionals with specialist knowledge and enable people with haemophilia to access care closer to home.

Creating an interactive national registry

Finally, a national web-based registry was created, with the additional functionality of allowing people with haemophilia to post questions for healthcare professionals via mobile phone or computer and for healthcare professionals to answer and follow-up with patients. It established a secure yet accessible medium to foster the dialogue between people with haemophilia and healthcare professionals. 

A bright future

At the end of 2019, approximately 420 healthcare professionals were trained in 14 different training sessions. Around 15 young people with haemophilia were involved in the establishment of the African youth group.

Clerment Sefojane, a representative of the youth group, said:

“I believe that through this youth project, the SAHF and other African National Members Organisations of the World Federation of Hemophilia (WFH) are in safe and capable hands for many years.” 

Clerment’s optimism suggests that an engaged youth will approach with confidence the challenges of ensuring sustainable, high quality haemophilia care in the country and beyond. It shows that the next generation is already working hard to help bring positive solutions for people with haemophilia, supported by the framework that this project has created.  

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