The Atypical HUS India Foundation recently learnt of a clinical trial involving a complement inhibitor being conducted by Novartis. Iptacopan is an oral drug being manufactured by Novartis. They have also started a clinical trial for adult aHUS patients (read more here: NCT04889430) for which recruitment is ongoing.
This article titled aHUS Trial Watch 15 highlights key information for the currently enrolling Novartis APPELHUS study. With a twice daily oral delivery, and seemingly a small molecule drug rather than a biopharmaceutical, Iptacopan holds potential to become an aHUS therapeutic drug candidate which may finally address the dual issues of cost and access.The Atypical HUS India Foundation is in touch with Novartis and they are looking for clinicians in India who might be interested in participating in this trial.
If you are a clinician interested in participating in this trial, please let us know by emailing us at firstname.lastname@example.org and we will forward your email to the right person in Novartis and hopefully connect the dots.
Also, please let us know of any other doctors who might be interested in this adult trial and we will reach out to them as well. Thanks!
If you are an adult aHUS patient, please share this website link with your doctor and encourage them to participate in this trial.
India has never seen a trial for a complement inhibitor. So, this is a fantastic opportunity for clinicians, patients and the aHUS community in general.
Once the trial completes, hopefully, if the results are as expected, Indians may soon have access to a complement inhibitor at last!