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Eculizumab

Volume 596: debated on Tuesday 2 June 2015

May I give my hon. Friend a particularly warm welcome to her place? NHS England routinely commissions eculizumab for the treatment of paroxysmal nocturnal haemoglobinuria, or PNH, and atypical haemolytic uraemic syndrome, or aHUS, as the drug is proven to be safe and effective in treating these conditions.

I very much welcome the statement last week from the Prime Minister in which he requests NHS England to look into the case of my constituent, 12-year-old Abi Longfellow. I am sure that gives great hope to Abi’s family. Abi has a rarer form of DDD—dense deposit disease—involving the alternative complement pathway, and there is evidence that eculizumab helps. Will my hon. Friend ensure that NHS England looks at this rare form and gathers evidence not just from the UK but from countries such as the US, China and Canada which have research and trials in this area?

This is a particularly difficult and tragic case. My hon. Friend is right to champion the case of her young constituent. My right hon. Friend the Prime Minister asked NHS England to make further contact with the Longfellow family to fully explain the decision, and I can confirm that the clinical director for specialised services at NHS England North has spoken to the family twice in the past few days. The National Institute for Health and Care Excellence is reviewing, as a priority, the evidence on the use of eculizumab in treating this condition.