Emi & Me - Exploring the impact of treatment with emicizumab
The Emi & Me study was designed by Haemnet to explore the impact of emicizumab on the lives of people with haemophilia who have inhibitors and their families.
Although prophylactic factor replacement remains the gold standard treatment for people with haemophilia, some people can develop inhibitors which makes it ineffective. This has meant that many people with haemophilia have had no choice but to treat bleeds on demand using bypassing agents, including Factor Eight Bypassing Agent (FEIBA) and/or activated Factor VII (Novo Seven). With the introduction of emicizumab in 2018, another treatment option is now available.
Emicizumab is a humanised bispecific antibody that was designed to mimic the action of factor VIII, binding to both the activated coagulation factor IX and to factor X. To put it simply, emicizumab doesn’t replace the missing factor but behaves like it. Because it isn’t factor VIII, inhibitors can’t stop it working – which means it can be used effectively as prophylaxis by PWH with inhibitors.
Given under the skin, either weekly, two‐weekly, or four‐weekly, emicizumab has reduced the number and frequency of bleeds for all people with haemophilia A, especially those with inhibitors.
Haemnet asked people with haemophilia and inhibitors about what it is like to take emicizumab and any differences it had made to their lives. They told us that as well as reducing the number of bleeds they experienced, it reduces the burden of treatment and gives a greater sense of control over their lives. This was echoed by family members, who also described a sense of freedom for both themselves and the family as a whole.
The study was funded by a research grant from Roche/Chugai.
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