aHUS Canada is pleased to share some positive news from England today – the National Institute for Health and Care Excellence (NICE) Highly Specialised Technologies Evaluation Committee (EC) has issued a final draft guidance recommending that Soliris (eculizumab) be funded for all patients in England living with aHUS. NICE has recommended Soliris for use within the National Health Service (NHS) in England as the first and only treatment for patients with aHUS. NHS England should be commended for its previous decision to provide interim funding for Soliris to aHUS patients until NICE made this final recommendation.
NICE recommended that the following arrangements be in place as conditions for the funding of Soliris:
- Coordination of the use of eculizumab through an expert centre;
- Monitoring systems to record the number of people with a diagnosis of atypical hemolytic uremic syndrome, the number of people who receive eculizumab, and the dose and duration of treatment for these people;
- A national protocol for starting and stopping eculizumab for clinical reasons;
- And a research programme with robust methods to evaluate when stopping treatment or dose adjustment might occur.
NICE has not yet issued final guidance to the NHS, therefore these decisions may change after consultation. Final guidance is expected in January 2015, and aHUS Canada will continue to keep the Canadian aHUS community updated with any news on this decision.
To read NICE’s full press release, please click here.