An eight-year-old boy in Kenya who lives with haemophilia
Unlike many boys with haemophilia in Kenya, eight-year-old Steve is fortunate enough to live with both his parents. All too often the father leaves the mother when he learns that haemophilia is passed down from the mother’s side.
In 2014, Sobi and Sanofi pledged to donate up to 1 billion IUs (international units) of extended half-life factor replacement treatment over 10 years, including up to 500 million IUs to the WFH (World Federation of Hemophilia) Humanitarian Aid Program over a period of up to five years. In December 2019 a team from Sobi visited Kenya with the WFH to see for themselves the impact of Sobi’s donation on the lives of patients in all social classes in Kenya. This was when we met Steve and his mother Judy.
Our guides on the trip were Dr Kibet Shikuku, widely regarded as Kenya’s foremost expert in the treatment of haemophilia; James, who lives with haemophilia A and is a volunteer with the Kenya Haemophilia Society (KHS); and Carlos, who lives with a haemophilia B and is an employee of the KHS. This superb team organised visits for us to haemophilia centres, patients’ homes, and the Kenyan parliament. Their aim was to help us understand and document what life is like for someone living with haemophilia in Kenya.
Two hours south of Nairobi by road is Steve’s home, where he lives with his mother Judy, his father and his younger brother. Unlike many in less fortunate circumstances, Steve’s family takes an enlightened view. When Dr Kibet meets a haemophilia family for the first time, he takes great care to make them understand how, above all, they need to support one another. He purposely doesn’t focus on the genetics in the early conversations.
Arriving in the village, the film crew caused a commotion, as usual. Steve came bouncing into the bus to greet Carlos before we even had a chance to climb out. It was touching to see what a role model Carlos was to Steve.
Steve has a big scar on the top of his head, resulting from surgery after an intercranial bleed a few years ago. His mother Judy has chosen not to let Steve’s hair grow. Why? Because she wants people to see the scar and ask questions. Judy believes that only by asking questions will people learn more about haemophilia and thus start to overcome the stigma associated with the disease.
Judy is an active member of the KHS working group, giving social and economic support to those who badly need it. Especially because many mothers are left to care for the children on their own, the burden associated with haemophilia becomes immense. The nature of the disease, and the acute bleeds haemophilia boys often suffer, can make it nearly impossible for the mother to hold down a regular job. Judy does what she can to help mothers find alternative opportunities to support their families.
Our donation is an important first step towards providing those most in need with a predictable and sustainable supply of haemophilia therapy. It is our hope that our peers, charitable foundations and government agencies will join us so that all people with haemophilia can have access to the treatment they need.
Data below provided by World Federation of Hemophilia
Over
16800
people reported treated in 40 countries
Over
117000
acute bleeds treated
Over
2000
surgical procedures, including limb-saving
Over
362
million IUs of factor donated
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