Accelerated Access Review

Baroness Ritchie of Downpatrick Excerpts

Tuesday 13th December 2016 Westminster Hall

[Ms Margaret Ritchie (South Down) (SDLP)]

It is a pleasure to serve under your chairmanship, Sir Alan. I thank my hon. Friend the Member for Dudley North (Ian Austin) for securing this very important debate.

The recommendations in the accelerated access review have been a cause of hope for many families throughout the UK. I welcome those recommendations and hope that the Minister today will reiterate the Government’s commitment to their implementation. I hope that he will also give consideration to a number of possible areas of clarification that I and, I am sure, other hon. Members will raise. However, the priority is to secure the most advanced and best medicine and technology for patients much more quickly than at present. Early access to new drugs can enhance and extend lives. It is vital not only that the UK keeps pace with other countries in approving new treatments, but that there is a consistent standard within the UK. I recognise that today’s debate focuses on NHS England, but I hope that a strong precedent is set for patients in Northern Ireland.

A few days ago, I received a letter from a constituent who feels that there is now hope. She has a four-year-old child with cystic fibrosis, which affects many of the organs in his body. She says that his life expectancy is 37, but it would be much better if there were access to Orkambi, that necessary drug. There was sadness on her part that NICE did not see fit to license the drug because of cost and a lack of necessary data. I hope that a change can take place to enable the drug to be made available.

Time limits mean that I cannot touch on every condition relevant to the accelerated access review, so I echo the points raised by my hon. Friend the Member for Dudley North and will focus on another condition to which the review relates and which has already been mentioned by my hon. Friend the Member for Bootle (Peter Dowd)—muscular dystrophy. The effects of that condition are also progressive and can range from mild to severe disability. There is a serious impact on the lives of those with the condition and their families. Sadly, it can also result in premature death, typically in childhood or early adulthood. Accelerating access to new and effective medicines and treatments is clearly vital for those affected by muscle-wasting conditions.

The recommendations around faster assessments by NICE, the flexible approval arrangement and enabling NHS England to negotiate price and flexible commercial deals at the early stages have been welcomed by Muscular Dystrophy UK. The charity has also pressed for funding to be attached to the early access to medicines scheme, so I was pleased to see its inclusion in the recommendations. However, I would draw the Minister’s attention to one recommendation in particular that I ask him to consider carefully. The accelerated access review has recommended a transformation designation and an accelerated pathway for some drugs. For some conditions that is wholly the right approach; however, in the case of muscular dystrophy the aim is to slow down muscle wastage as opposed to transforming or stopping the progression of the disease, and the medicines for muscular dystrophy are therefore incremental. I am sure that the disadvantage of incremental drugs is by no means the aim here, so I ask the Minister to take account of that and to ensure that treatments and medicines for muscular dystrophy are not overlooked.

Finally, Sir Alan, we are talking about treatments that can prolong a child’s ability to walk and to live, having profound effects on their quality of life and that of their family and carers. I look forward to the Minister’s clarification on this issue, and to an acceleration by NICE of the licensing of the drug Orkambi for cystic fibrosis sufferers.