Recent News and Views

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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aHUS Action clinical and patient group summit – York, October 2014

The summit, open to clinicians and patient group representatives only, is being facilitated by the Secretariat to aHUS Action whom will present a number of options for joint patient and clinical group activities at the meeting, to either break the current impasse over funding of Soliris and, by implication, the future of a Highly Specialised National Service in the NHS for treatment of aHUS, or celebrate a hard won victory for the aHUS community.

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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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