Road Infrastructure

Debate between Julian Sturdy and Cheryl Gillan

Wednesday 5th July 2017 Westminster Hall

[Julian Sturdy (York Outer) (Con)]

Prioritisation is very important, but, moving away from Highways England, does the hon. Lady agree that local authorities find it difficult to allocate funds to produce feasibility studies and business cases to move projects forward? There has been a problem in my constituency with moving forward the York outer northern ring road, which is regularly congested—many constituents call it a car park. Does the hon. Lady agree that if the bypass fund is properly targeted, it might allow local authorities to move some of those long-term projects forward?

[Mrs Cheryl Gillan (in the Chair)]

Order. May I remind Members that interventions should be short?

Cystic Fibrosis

Debate between Julian Sturdy and Cheryl Gillan

Tuesday 8th December 2015 Westminster Hall

[Mrs Gillan]

The hon. Gentleman is absolutely right. I pay tribute to the other colleagues in the House who took part in that petition. That truly cross-party effort aimed to draw attention to the drugs that are not readily and fully available to our constituents. I was grateful that it was a cross-party delegation, because such things are much stronger when they take place in an atmosphere of good co-operation across the board rather than a political atmosphere. We saw parliamentarians at their best, so I thank the hon. Gentleman for attending that lobby at No. 10 Downing Street, which was inspired partly by Muscular Dystrophy UK and partly by the families it supports.

The issue for me is the drug that the hon. Member for Dudley North referred to. Translarna is its trademark name; it is called ataluren. It is produced by a company called PTC Therapeutics, which calls it its “lead product candidate” for these disorders. I know that the Minister is familiar with PTC Therapeutics, and I hope that in his winding-up speech he will refer to any contact he has had with the company. One of the issues surrounding the efficacy and licensing of the drug is the cost, so I hope the Minister will update us on that situation.

PTC Therapeutics states that the drug is a

“novel, orally administered small-molecule compound for the treatment of patients with genetic disorders due to a nonsense mutation. Ataluren is in clinical development for the treatment of Duchenne muscular dystrophy caused by a nonsense mutation…and cystic fibrosis caused by a nonsense mutation…Ataluren was granted conditional marketing authorization in the European Union under the trade name Translarna”.

I believe that it is already available in France, Germany, Italy and Spain. It is the first treatment approved for the underlying cause of Duchenne muscular dystrophy, which is a complicated condition.

Nonsense mutations are implicated in a variety of genetic disorders. They create a premature stop signal in the translation of the genetic code contained in the mRNA. That prevents the production of full-length, functional proteins. The company says that

“ataluren interacts with the ribosome, which is the component of the cell that decodes the mRNA molecule and manufactures proteins, to enable the ribosome to read through premature nonsense stop signals on mRNA and allow the cell to produce a full-length, functional protein. As a result…ataluren has the potential to be an important therapy for muscular dystrophy, cystic fibrosis and other genetic disorders for which a nonsense mutation is the cause of the disease.”

The importance of access to Translarna cannot be overstated. Boys such as my constituent Archie Hill have been waiting since August 2014 for a decision on whether Translarna will be approved in England. As I said, it is the first licensed drug to tackle an underlying genetic cause of Duchenne’s. It would help to keep Archie and these other boys walking for longer and potentially delay the onset of the devastating symptoms affecting the heart and lungs that I referred to earlier.

NICE’s appraisal of the drug is ongoing, but the families have not yet been made aware of when guidance will be issued, leaving them facing an anxious wait over the Christmas period. Over the time I have known Archie and his family, I have seen his mobility decrease; it is depressing to see such an active, energetic, lively, intelligent young man, who has his life before him, being denied a drug that could well keep him active for longer and improve his quality of life.

[Julian Sturdy (York Outer) (Con)]

My right hon. Friend is making a powerful argument. She is right to say that we must improve access to new medicines, which can transform the lives of people such as her constituent Archie. Does she agree that new medicines may also reduce hospital admissions, which would have a huge impact on the NHS?

[Mrs Gillan]

I thank my hon. Friend for that intervention. He is absolutely right. There is no doubt that increasing the length of time that these young people can be kept active and mobile will inevitably reduce the amount of time that they spend requiring treatment in other health settings.

I also want to describe the emotional journey. Seeing anybody suffering with a muscle-wasting condition is terribly draining, because they fade before one’s eyes. That is why the drug is so important, particularly for young people suffering from Duchenne’s. I turn now to my constituent’s mother, Louisa Hill, for a quotation. She said:

“Decision makers need to understand the impact on children of even a small change. It gives them more time to run and play football with their friends. It’s really buying precious time. Archie will have to deal with very difficult mental and physical challenges as his condition progresses. Translarna is buying time for Archie just to be a kid.”

If you are not touched by that statement from a mother, I do not know what you would be touched by.

Translarna is not the only potential therapy that could benefit Archie. For example, others, such as utrophin upregulation, which involves injecting a protein called utrophin into the muscles to compensate for the loss of dystrophin in boys and young men with Duchenne’s, are in a later stage of clinical trial. It is vital that the process of moving such drugs from the laboratory to the clinic is expedited, including ensuring that appraisal processes are as swift as possible; that secure funding is available to help meet the costs of new drugs; and that NHS England and NICE have effective mechanisms to negotiate an appropriate price with drug companies.

On 14 October, I had the temerity to question the Prime Minister on Translarna at PMQs. He referred to the cancer drugs fund and its role in reducing the costs of drugs for rare types of cancer. A similar model would help for rare disease drugs for conditions such as Duchenne muscular dystrophy. The Prime Minister said:

“The cancer drugs fund has helped to reduce the costs that the companies charge. We need to see that in other areas, too.”—[Official Report, 14 October 2015; Vol. 600, c. 313.]

The Government’s accelerated access review provides an important route through which such issues could be addressed. I hope that the Minister will have his feet held to the fire by the Prime Minister’s answer.

Research into treatments for Duchenne’s is at a promising stage, with a range of potential therapies in late stage clinical trials. As I said, Translarna is already licensed in Europe, but the UK muscle centres where trials are conducted are reporting that given the growth in clinical trials they lack the resources, such as staffing levels and equipment, to keep pace. As a result, centres report that they are turning away new trials—not because of bad science, but because of a lack of capacity. [Interruption.] I see the Minister shaking his head. He knows that the situation is serious and I hope he will comment on it.

That lack of capacity risks causing a bottleneck in drug development and gives boys such as Archie Hill less chance to enrol on a trial that could allow them access to a new therapy. A clinical trial capacity audit, conducted by Muscular Dystrophy UK as part of the “Newcastle Plan” of joint working with UK Duchenne charities to address clinical trial capacity, corroborated the reports and also found that:

“Work on clinical trials is not counting towards specialist training at many centres for medical doctors, physiotherapists and nurses”

which is affecting trainee participation. In addition, it was found that a

“lack of acknowledgment of research in clinical job planning means that already overstretched clinical staff are having to carry out research activities in their own time. This is consequently severely limiting centres’ abilities to take part in research.”

It also found that the process of setting up a clinical trial can be excessively bureaucratic. Perhaps the Minister, with his experience in this area, will be able to comment on that.

I am disappointed that Archie Hill and the other boys suffering from Duchenne’s do not have access to Translarna. The process has seemed to take an incredible length of time, and I hope that the Minister will be able to do something about it. Like the hon. Member for Dudley North, I have a series of questions that I want to put to the Minister, which may help him when he sums up.

First, will the Minister commit to meet representatives of Muscular Dystrophy UK? I would be grateful for that, and it would be helpful for him to discuss the accelerated access review, particularly in the context of the emerging treatments for Duchenne’s. Secondly, I do not suppose that he can say this, but when can families such as Archie’s expect to be notified of NICE’s guidance on access to Translarna on the NHS? It is the obvious question and one that I hope he can answer.

Thirdly, will the Minister ask the chief executive of the National Institute for Health Research’s clinical research network how his organisation plans to work with specialist muscle centres to address concerns over the lack of clinical trial capacity, particularly for Duchenne’s? The hon. Member for Dudley North referred to the latest thinking in Scotland and Northern Ireland, such as introducing a ring-fenced fund for rare diseases. I hope that that might be a recommendation of the accelerated access review.

I do hope that the Minister will be able to give us some optimism. Boys such as Archie Hill are an inspiration to us all. For one so young, he is very mature in his attitude towards not only his Duchenne muscular dystrophy, but other children suffering from rare diseases. He has great capacity for humanity and for tireless campaigning. This will be the second Christmas since I met him that he will be waiting for an outcome on Translarna. Will the Minister talk to PTC Therapeutics, to NICE and to anyone else to whom he can reach out, to ensure that this year the Christmas present for Archie Hill and other boys in England is to have access to ataluren or Translarna?

Mix 96 (Digital Radio Switchover)

Debate between Julian Sturdy and Cheryl Gillan

Thursday 28th November 2013 Commons Chamber

[Mrs Gillan]

I am glad my hon. Friend had the opportunity to intervene, and I hope that several other colleagues will do so because they feel so passionately about the issue. Sadly, I am old enough to remember Radio Caroline, when broadcasting to the sea was an important part of building the culture of listening to the radio. We take my hon. Friend’s point, however, because from the perspective of Splash FM, that money would effectively be wasted.

As hon. Members know, the role played by local radio stations is a considerable one. As things stand, the Government are forcing many of them to change their editorial areas out of all recognition. It strikes me that forcing a breaking of that editorial link between the local community and its radio station flies in the face of the Government’s localism and big society agenda.

[Julian Sturdy (York Outer) (Con)]

I congratulate my hon. Friend on introducing this important debate. As she rightly says, independent radio stations such as Minster FM play an important role in our local communities. We need that platform to allow local community radio stations to continue, because it must be about listener choice.

[Mrs Gillan]

I agree entirely with my hon. Friend. That an Adjournment debate at 5 o’clock on a Thursday afternoon has attracted so many hon. Members, when, to be fair, most of our colleagues will be in their cars listening to their radio stations, is a measure of how popular such stations are.