The aHUS alliance has found out that there has been a trial of the drug Coversin for the treatment of aHUS ( there is one too for PNH which was known about) , but there is little information about it, including where it is taking place. This is the only reference that can be found, it is on the European Medicines Agency website click here .
Apparently the trial is likely to cease because no one has been recruited to it. A few weeks ago the alliance reported on the barriers to aHUS clinical research. This trial exemplifies it.
Just like eculizumab, Coversin is a C5 protein blocker, Its technology is based on a molecule rather than a monoclonal antibody. It has the advantage that is unaffected by the C5 polymorphism ( p.Arg885Cys) which makes eculizumab ineffective in some patients. It also is self injected subcutaneously weekly by patients themselves using auto-pen technology. The drug can be stored at room temperature.
It is believed, but unconfirmed, that the trial was located in France Germany and UK. All of those countries have an aHUS prevalent population which has access to eculizumab so this trial would seem to depend on any of the prevalent population which had the eculizumab resistant polymorphism, or a chance new incident of a patient with it. Are there such patients in those countries; and are they even aware that such a technology which could help them exists?
Most incidents of eculizumab resistant aHUS patients are reported in Japan and South America. They would seem to be more likely in the USA than Europe. But Europe is more likely to have countries where the prevalent patient population does not have access to eculizumab. These patients would benefit if they were in scope, or even knew about it. Maybe such patients should be getting their clinicians to contact Akari the suppliers of Coversin to at least make them aware of a potential trialist that it is losing out on. Link to Akari website here