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PetitionS

Volume 563: debated on Tuesday 14 May 2013

Access to Eculizumab

I rise to present a petition on behalf of the sufferers of atypical haemolytic uraemic syndrome, known as aHUS, a rare disease that causes irreversible kidney failure. Until recently there was no effective treatment for this condition, which has 139 known patients in England, of whom 20 live in Devon. I am presenting the petition to press for aHUS sufferers’ access to Eculizumab, a new drug that has been proven to cause a dramatic improvement in kidney function and, indeed, in the quality of life of patients diagnosed with aHUS. The petition has received almost 30,000 signatures nationally and is presented on behalf of the national group, aHUS Action. It was brought to me by one of my constituents, Elena Lilley, who suffers from aHUS. She received Eculizumab as part of a clinical trial three years ago and it has transformed her life, avoiding the need for her to be put back on dialysis and enabling her to resume a full-time job.

The Advisory Group for National Specialised Services has recommended that Eculizumab should be nationally commissioned by the NHS, emphasising its life-saving potential and ability to improve the quality of life of all aHUS patients. However, earlier this year health Ministers decided to refer Eculizumab to the National Institute for Health and Clinical Excellence for a further review of its affordability. Some patients have already been waiting over 18 months for a decision, and an announcement is not expected until December. The petition urges that action should be taken to ensure that all aHUS patients, including those already on the drug, should be given access to Eculizumab without delay pending the outcome of NICE’s review.

Following is the full text of the petition:

[The Petition of Miss K Bazzichi and Miss E Woodward Trustee Officers of aHUSUK,

Declares that aHUS patients should be given access to Eculizumab when they need it, without delay, and not be disadvantaged by the Ministers' decision not to implement the AGNSS recommendation ahead of a review by NICE.

The Petitioners therefore request that the House of Commons issues instructions to the NHS CB to take such action, whilst waiting for NICE's decision.

And the Petitioners remain, etc.]

[P001176]

It is a pleasure to follow the hon. Member for North Devon (Sir Nick Harvey). The 500 signatures on my petition should be added to the 30,000 signatures on his. I was approached by my constituent, Trevor Murby, of Abbots Road, Leicester, because his grandson, Finley Murby, was having great difficulty in accessing this drug. As a result of the work of Trevor Murby and so many other people involved in the campaign, he was able to get the drugs that he needed. I concur with the hon. Gentleman that it is really important that everyone who needs this drug has access to it and that action is taken immediately to help those who are disadvantaged.

Following is the full text of the petition:

[The Petition of Mr T Murby and Mr Finley Murby Trustee Officers of aHUSUK,

Declares that aHUS patients should be given access to Eculizumab when they need it, without delay, and not be disadvantaged by the Ministers’ decision not to implement the AGNSS recommendation ahead of a review by NICE.

The Petitioners therefore request that the House of Commons issues instructions to the NHS CB to take such action, whilst waiting for NICE's decision.

And the Petitioners remain, etc.]

[P001177]