Cystic Fibrosis

Martyn Day Excerpts

Tuesday 8th December 2015 Westminster Hall

[Martyn Day (Linlithgow and East Falkirk) (SNP)]

It is a pleasure to serve under your chairmanship, Sir Edward. I applaud the hon. Member for Dudley North (Ian Austin) for bringing this timely debate. If any fact highlights the importance of this, it is that the median survival age is just 28. That really highlights the issue. If that does not focus minds on the need to do something, nothing will. He also touched on quality of life. We must remember that it is not just about statistics and medical reports. It is about the life of not just the sufferer, but the families involved. I am grateful to be able to take part in the debate.

The hon. Gentleman also mentioned issues relating to NICE, its assessments and medicines. I am obviously a Scottish Member, and things are slightly different in Scotland, so I was grateful that Members mentioned the differences. One thing we have is the Scottish Medicines Consortium, which assesses medicines a bit quicker, putting them through the peer-approved clinical system. That is a good practice, which the Minister should perhaps look at. Having said that, we are also still waiting for the assessment of Orkambi, and we hope to have it around April, so there is still a delay in getting things through for everyone.

The right hon. Member for Chesham and Amersham (Mrs Gillan) made some good points. I was interested to hear about muscular dystrophy, which is not an issue I know much about, although the situations people face are obviously very similar. She highlighted the impact on families and the importance for children and young people. When we hear people’s life expectancy, that really highlights just how devastating this issue is.

The hon. Member for York Central (Rachael Maskell) made interesting points about therapeutic measures. Her key message was about providing hope, and I share her view on that. I hope that this Government and all the Governments in the devolved Assemblies take on board the message that we should not be nervous about costs. That message needs to go out from here very strongly.

The hon. Member for Strangford (Jim Shannon) highlighted the different and positive practices in Northern Ireland, which, again, I find interesting. I am sure there are things we can learn from each other’s areas. One positive in Scotland is that the Scottish Government have the UK-leading new medicines fund, which, in May, more than doubled the support it provides, from £40 million to £90 million. That will affect all rare diseases, including cystic fibrosis. There are therefore things we can do, and there is good practice we can demonstrate and lead the way on.

Another thing we did in Scotland was to abolish prescription charges. Before we did that, two thirds of all paid-for prescriptions were for long-term conditions. That was another financial impact on the families we are talking about, who already have enough difficulties.

With those comments, I look forward to hearing the Minister’s view. I hope we have sent a strong message to not only the Government here, but the Governments in our devolved Assemblies.