Agnes Kisakye: A journey to systemic change in Uganda

Agnes describes her journey with haemophilia as one of despair followed by hope. Despair that, when her nephew started showing symptoms of haemophilia in 2004, there were no diagnosis facilities in Uganda, and care and treatment were only available through international organisations. Hope thanks to the changes that she is now seeing across the country.

“The trouble we went through as a family to save the life of my nephew led us to look out for other families in Uganda with this condition,” explains Agnes. With the philosophy that ‘every life matters and is worth saving’, Agnes and the Haemophilia Foundation of Uganda (HFU) have worked tirelessly to identify people with haemophilia, refer them to appropriate care and advocate for haemophilia to be included in national healthcare policies.

Engaging communities, media and authorities

Much of Agnes’s work involves a hands-on approach to supporting people with haemophilia and their families: giving advice on how to manage the condition, linking them with the right doctor, and counselling mothers who have been stigmatised by their families and communities.

Combined with this have been efforts to create systemic change. Since partnering with the NNHF in 2015, Agnes has engaged media in a strategic way, ensuring they helped spread tailored messages that helped raise awareness whilst emphasising the need for authorities to support haemophilia care.

HFU’s achievements so far have been impressive: haemophilia testing and treatment is now free at the national hospital, the diagnosis rate has increased thanks to outreach programmes and the capacity of healthcare professionals has been enhanced through trainings both locally and abroad.These feats, and the exceptional project management shown throughout, are some of the reasons why the Uganda 2 project was selected as the NNHF Project of the Year 2017.

Expanding haemophilia care beyond Kampala

“Most of the patients I meet come from impoverished homes, some of them cannot even afford transport to go to hospitals. But when I give them assurance that diagnosis and treatment is free, they do everything within their means to access the treatment in the hospitals,” explains Agnes. However, this highlights an ongoing challenge that has now become a focus of HFU’s advocacy efforts – despite significant progress in the regions, haemophilia care outside of the capital city remains limited.

Agnes has been one of the key players in HFU’s advocacy activities, which have resulted in a motion on haemophilia being discussed in parliament for the first time in 2019. It has now been escalated to the Ministry of Health, and if approved would lead to the government supporting the expansion of haemophilia care across the country.

A sustainable advocacy roadmap

Agnes lays out their advocacy strategy, saying, “having a national policy on haemophilia is the most sustainable way of ensuring healthy living and productivity for people living with haemophilia. The government should also have a nationwide sensitisation plan to create awareness and also integrate people with haemophilia into the national education policy and production activities.”

With the progress made so far and a clear strategic direction ahead, Agnes has more reason than ever to be hopeful in her journey to improve haemophilia care in Uganda.