Recent News and Views

aHUS Action updates 100 MPs and Peers on anticpated decision from NICE

In aHUS Action’s consultation submission to NICE we state that, although there are concerns regarding the cost of the medicine, the clinical benefits of Eculizumab are proven and do not require further evaluation. We are therefore understandably concerned that a restrictive or negative recommendation by NICE could mean considerable uncertainty for patients.

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aHUS Action responds to NICE consultation on Eculizumab

aHUS Action welcomes the publication of the NICE Evaluation Consultation Document (ECD) that clearly recognises the clinical efficacy of Eculizumab and the step-change it has made for the treatment of aHUS.   aHUS Action is however extremely disappointed that patients are still waiting for clarification on the long-term availability of Eculizumab in the NHS, despite the medicine being licensed for the treatment of aHUS in November 2011.

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Welsh Government publishes orphan medicines review

Welsh Government

The Welsh Government has published a commissioned report that reviews the appraisal process for orphan and ultra-orphan medicines in Wales.

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NHS England publishes guidance on Eculizumab for aHUS


NHS England has now published its full clinical commissioning policy for Eculizumab for aHUS.

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