Orkambi and Cystic Fibrosis

Debate between Kirstene Hair and Paul Masterton

Monday 19th March 2018 Westminster Hall

[Paul Masterton (East Renfrewshire) (Con)]

It is a pleasure to serve under your chairmanship, Mr Evans.

I will not go back over what Orkambi is or what it does, but it is important to remember that we are talking about only the second precision medicine for cystic fibrosis to be licensed in the United Kingdom. It has rightly been licensed for use with people over the age of 12 who have this specific form of cystic fibrosis, and both the Scottish Medicines Consortium and NICE have recognised that it is a beneficial treatment. However, neither body has recommended it for general use on the NHS, meaning that, except for on compassionate grounds in certain rare cases, many people with cystic fibrosis across the UK are simply unable to access it. Given what Orkambi can do, it is no surprise that many Scots with cystic fibrosis were disappointed by the SMC’s decision in May 2017 not to recommend it for general use on the NHS in Scotland.

Although I received a number of campaign emails ahead of the debate, it was two pieces of personal correspondence that convinced me of the need to come along today and speak. Both came from a grandparent of a young person battling cystic fibrosis: Mr Alexander from Newton Mearns whose grandson is 11, and Mrs Marshall from Eaglesham. Mrs Marshall wrote to me regarding her seven-year-old grandson:

“Through vigorous twice-daily physiotherapy and the many sports he enthusiastically takes part in, he has not lost too much of his lung capacity yet. He’s a very sociable and clever child and it is heart-breaking to know that this disease could be, at the very least, slowed down or almost eradicated by these new drugs which are not available to him. Please, too many people are suffering more than they need to and dying unnecessarily young because of the delay in approving Orkambi.”

[Kirstene Hair (Angus) (Con)]

I too am here because of the number of constituents who have been in touch but also because I lost a friend, Lucy, at the age of 19. She had so much to give. She had talent and was the most caring person you could ever meet. She dealt with it in an incredibly dignified manner, and I urge the Minister to show that same dignity in dealing with his response today.

[Paul Masterton]

My hon. Friend powerfully sums up why Vertex, the SMC, NHS Scotland, NHS England and NICE need to work together to find a way to make Orkambi available on the NHS as soon as possible, not just in Scotland but right across the United Kingdom. I understand that confidential talks are ongoing and I very much hope that there will be a positive conclusion; there is no reason to assume that an agreement cannot be reached. We have seen things happening right across Europe, and in the Netherlands a deal was struck fairly recently to allow the drug to be made available.

Rural Communities in Scotland: Broadband

Debate between Kirstene Hair and Paul Masterton

Wednesday 22nd November 2017 Westminster Hall

[Kirstene Hair]

What is abundantly clear is that when we scratch the surface there is often no regard for the practicalities, and then, when the Scottish Government cannot deliver—yes, you guessed it—the blame lies at someone else’s door. They want all the powers but none of the responsibility.

This issue is not just about Government in Edinburgh. It is having a real impact on the day-to-day lives of those living without proper connectivity. Increasingly, businesses in my constituency tell me that it is becoming more and more difficult to keep up with day-to-day work and to compete both nationally and internationally —never mind thinking of investing in new technologies, which would greatly enhance their output—all because the connectivity levels cannot support it. This issue is seriously hampering the growth of our economy. My largest town of Arbroath has more than 20,000 residents, so it is hardly rural, but it has speeds of less than 10 megabits per second.

[Paul Masterton (East Renfrewshire) (Con)]

As a central belt MP, I feel slightly guilty about having a significantly higher accessibility rate than most, but even in my constituency there are individuals and businesses that are some minutes’ drive away from Glasgow, in communities in Eaglesham and Uplawmoor, which have no access to sensible broadband. Does that issue not affect connectivity and business future-proofing as we go forward?

[Kirstene Hair]

My hon. Friend is absolutely right. With Scotland’s economy growing at a slower rate than the rest of the UK, it is fundamental that we have basic infrastructure in place.

Angus has one of the lowest download speeds in the UK and one of the lowest rates of superfast broadband across our UK. Angus is simply being failed by the Scottish Government. Imagine a business trading across the world that can barely get an internet connection for their office. So many other countries have higher speeds and levels of connectivity than Scotland, so what do the Government in Edinburgh do for people? The answer is, nothing. Actually, I tell a small lie: they will happily explain that it is nothing to do with them—that is, until a cabinet is connected to fibre, and then a Minister and his team will race out to get a photo opportunity and shout about how they are delivering for Scotland.

I wish the Scottish Government would listen to one of their own—Winnie Ewing, who once said:

“Stop the world, Scotland wants to get on”.

I ask them to stop the games and the grievance and get on with delivering vital broadband services for Angus and Scotland, so that my constituents can get the services they need and deserve.