On 11th March 2015 Greg Mulholland questioned Prime Minister David Cameron, demanding to know when he will grant interim funding for the families whose access to the drug has been endangered by NHS England’s flawed processes.
Below is the transcript of the exchange:
Greg Mulholland (Leeds North West) (LD):
This is the third time in four months that I have raised at Prime Minister’s questions NHS England letting down the 180 or so people with ultra-rare diseases, some of whom are outside the House today, who have been failed by a flawed process. Some of those children will lose access to their drugs from May, and their conditions will deteriorate irreversibly. We have two sessions of Prime Minister’s questions left. Can he tell me that, in that time, he will announce when we will get interim funding for the drugs that these children and these people need?
The Prime Minister:
My hon. Friend is absolutely right to raise this issue, because these are very rare and debilitating conditions, and there are drugs that can help the children who have them. Having looked at this—and I know that the health and science Ministers have looked vary carefully at it and met the families and the drug companies, as well as NHS England—my understanding is that NHS England is holding a review, which will be completed by the end of April, and the companies are currently funding these drugs until the end of May. So I do not see any reason why there should not be continuity of care and continuity of drugs, and that is what I hope we can achieve.