Recent News and Views

aHUS Action requests NICE to clarify position on National Highly Specialised Service

Under the draft terms of the recommendations on the use of Soliris in the NHS from NICE, the committee has stated unequivocally that Soliris must be managed via an expert centre to ensure treatment protocols are adhered to but the recommendations fall short of stating whether a full NHS National Highly Specialised Service is needed.

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aHUS Action response to NICE Highly Specialised Technologies Committee decision

The Committee has rightly recognised that Eculizumab marks a step change for the treatment of aHUS and this initial decision provides much needed hope for patients after many years of uncertainty.

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aHUS Action calls on NICE to publish outcome of HST meeting in September

A national meeting of aHUS Action and aHUS UK will take place in early October, and it is vital that everyone attending is fully informed as to the decision of NICE in good time.

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National Tariff – Excluded Medicines List (Eculizumab)

aHUS Action has requested that Eculizumab, indicated for the treatment of aHUS, is included on the exclusion list for high-cost medicines outside of the National Tariff and therefore funded centrally by NHS England.

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