Access to Eculizumab

Access to Eculizumab for patients with aHUS

NHS England published NICE guidance for the use of Eculizumab for treating in aHUS in January 2015.

After a competitive tendering process, the NRCTC encompassing the National aHUS service based at Newcastle upon Tyne Hospitals NHS Foundation Trust was commissioned for the expert diagnosis and treatment of aHUS with Eculizumab in May 2016.

The service offers comprehensive diagnostic clinical and pathological investigations and expert opinion, facilitating optimal patient management on a shared-care basis with referring clinicians and other specialist services.

In 2021, the service was funded to provide diagnostic support for referrals from Scotland.

As part of the assessment of each potential new diagnosis of aHUS, we will require completion of a diagnostic checklist and a signed shared care protocol following discussion with the on-call consultant nephrologist for aHUS, contactable through the switchboard at the Newcastle upon Tyne Hospitals NHS Foundation Trust.

A decision as to whether NHS England will fund Eculizumab / Ravulizumab is usually available within 24 hours.

As of October 2017, to keep a complete audit trail of the process and efficiency, approval for funding of Eculizumab / Ravulizumab will only be possible via Blueteq as mandated by NHS England. 

Access to Eculizumab for patients with C3G

In February 2017, NHS England announced that it would fund the use of Eculizumab for treatment of recurrence of C3G in a kidney transplant in England.

In conjunction with the local teams, a team of experts from the NRCTC and Imperial College Healthcare NHS Trust will assess cases of recurrence of C3G in a transplanted kidney.

They decide whether a patient is suitable for funding for Eculizumab, based on criteria set by NHS England.

In those patients where Eculizumab can be funded, a shared care agreement then operates between the local team and the service. The shared care agreement allows the service to collect data on treatment and outcomes that we are required to provide to NHS England. 

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