George Freeman urges specialist drug manufacturers to work with NHS England on pricing

15th December 2015

Speaking in reply to a debate on access to specialist neuromuscular care and treatments, George Freeman urges the drug manufacturers to work with NHS England to speed up access to specialist drugs which are available elsewhere in Europe.

The Parliamentary Under-Secretary of State for Life Sciences (George Freeman): It is a pleasure to serve under your chairmanship, Mr Brady. I am left with 10 minutes in which to try to deliver my speech and the answers that I have carefully prepared while listening to colleagues’ comments. If I run short of time, I will undertake to write to everyone in the Chamber with answers to the points raised.

I start by paying tribute to my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) for securing the debate. She is a tenacious advocate on this issue, as on others. I join her in paying tribute to Archie and his family. I have met patients who suffer from these diseases and their families, and one’s heart goes out to them. One wants to pay tribute to the bravery with which they deal with their conditions. As is so often the case in the history of medical progress, the families, patients and carers are those who advocate and, in the end, win through to make their point heard, with the help of colleagues from across the House. My right hon. Friend eloquently paid tribute to the families of children with these disorders and diseases who, in many ways, suffer every bit as much as the patients who show such incredible fortitude. She asked me last week whether I would give her an A grade for effort and persistence. I will happily give her an A-plus in this end-of-term summary, but the people to whom we really want to give an A-plus are NICE and NHS England.

I want to touch on some of the excellent points that were raised. My right hon. Friend raised Vimizim and Translarna, so I will say something in detail about the timing of those decisions in a minute. She also made an important point about standards of care across the NHS in clinical trials, which was mentioned by numerous colleagues, and the importance of NICE giving more prominence to the time aspect of these conditions, which are unusual because they can deteriorate with every week’s delay in getting treatment.

The hon. Member for York Central (Rachael Maskell) gave us the benefit of her front-line clinical expertise. In case I run short of time, I shall say now that I will happily convene a meeting at the Department of Health with officials from my Department and NHS England, to which I invite colleagues from all parties who want to discuss the issues she and others raised about front-line care, because a range of practical issues about such care has been raised, in addition to access to drugs, and giving colleagues the chance to raise such points on behalf of their constituents would represent a powerful opportunity. The hon. Lady talked in particular about training and the interface of paediatric and specialist services, which I come across in connection with numerous different specialist conditions.

My hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) spoke passionately about James, Jules and Jagger Curtis, and the importance of expediting those particular decisions and quicker assessment, as well as adoption in general. That is a passion of mine, which was why I launched the accelerated access review to look systemically at what we can do to expedite getting new medicines into the service. She also touched on the importance of wheelchair access.

The hon. Member for South Down (Ms Ritchie) talked eloquently about Michaela and the importance of specialist, multidisciplinary teams. The hon. Member for Strangford (Jim Shannon), who gets the prize for appearing in more debates with me than any other Member of the House, which is a tribute to his activism as the Democratic Unionist party’s spokesman on these issues, highlighted the importance of Belfast as a hub of research and regional strategies in Northern Ireland and spoke about his constituents. This is a devolved matter, and while I pay tribute to the work of researchers and medics in Northern Ireland, it is important that the devolved Administration in Northern Ireland put in place a similarly enlightened commissioning process.

The hon. Member for Bridgend (Mrs Moon) raised the broader issues of Parkinson’s and neurological disorders, while the hon. Member for Dumfries and Galloway (Richard Arkless) spoke passionately about his mother’s suffering. Before I came to Parliament, I worked in Scotland and, as he highlighted, in this area, as in several others, Scotland pioneers some of the clinical commissioning work. The supreme irony of the debate was brought to light by his request that we depoliticise the NHS. For me, one of the greatest steps following the Health and Social Care Act 2012 was the separation of the NHS from the Department of Health. NHS England now operates under its own arm’s length management, subject to a mandate from Ministers

We do not control the NHS—believe me that if, for one afternoon, I could do that, I wish it was now. I would love nothing more than to pull the lever and give all these children the drugs that we all want them to get before Christmas, but that is not in my gift, and I suggest that it is in all our interests that it is not. It is right that such decisions are taken by NHS England and clinical professionals, advised by the very best people at NICE.

Barbara Keeley: It is important that the NHS mandate covers these conditions because at the moment it does not. Something must be done to make sure that they are covered.

George Freeman: In the few minutes I have available, let me say a few things about the main issues raised. I pay tribute to Muscular Dystrophy UK, Robert Meadowcroft, Emily Crossley, the Duchenne Children’s Trust, Action Duchenne and all the other organisations that work so hard in this area, and specifically on the two or three key drugs.

I remind the House that the decision from NICE on Vimizim is due before the end of the year. Without breaching due process, I have asked that, if that decision is in the pipeline, it can be made as quickly as possible, ideally before we all break up for the Christmas holidays. That is not in my gift, but I made that request. Similarly, I have requested that the Translarna decision, which I believe is due in February, is similarly expedited. However, again, that is not in my gift, and while during the year the Prime Minister and I have urged NICE and NHS England to do everything they can to expedite their decision making on those drugs, we do not have the power—rightly, in my view—to step in and breach process. It is fair to all patients in the NHS that decisions are taken properly.

Mrs Gillan: The Minister has given us a sympathetic hearing and I know that he has done everything in his power to try to bring forward that decision. Quite rightly, it is not his decision to make, but, through him, may I appeal to the men and women who are making that decision? If they have any humanity about them, they ought to make a positive announcement before Christmas.

George Freeman: My right hon. Friend made the point more powerfully that I could. On Vimizim, I am delighted that BioMarin, the company concerned, has, following exhortation from me and others, sat down with NHS England and gone through pricing flexibilities. I have been able to grant an access agreement. The drugs are incredibly expensive, which is what makes NICE’s work difficult, so if anyone from PTC Therapeutics, the company responsible for making Translarna, is watching, I urge them to sit down with NHS England and adopt a similar approach.

On specialist commissioning, we lived through and focused on difficult decisions, and this summer NHS England agreed to 23 new treatments, including Duodopa, which controls the symptoms of patients with Parkinson’s disease, wider access to proton beam therapy, and extending treatment with ivacaftor for cystic fibrosis involving G551D mutations.

We live in an age of extraordinary biomedical progress, but budgets struggle to keep up with the rate of progress that our scientists and researchers make. I know that this of little comfort to my right hon. Friend and to Archie and his family, but I hope that hon. Members agree that, in deciding which treatments should be procured on behalf of us all, due process must apply. However, I share their frustration, which was why I launched the accelerated access review, which will report independently to me in the spring. That substantial piece of work is examining whether we can do more to embrace breakthroughs in genomics and informatics to give NICE and NHS England new flexibilities to speed up how innovations for patients are assessed, as well as to explore new pathways and flexibilities for different models of reimbursement to get innovation through quicker.

I want to pick up the point that was made about specialist neuromuscular care. The truth is that there are few curative treatments for most of these diseases, so we are talking about the importance of routine care for people that is provided by local primary and secondary care services via local CCGs. However, a number of specialist services have been designated among the 146 that NHS England is responsible for commissioning nationally, which are set out in legislation and commissioned directly by NHS England through 10 area teams. Twenty-five specialised neurological treatment centres across England ensure that patients can access high-quality neurological care where they live.

As I said, I will be happy to convene a meeting in the Department with officials and NHS England to talk about how we can address some of the practical issues raised when providing front-line, integrated services. I fear that the clock is against my being able to go through the 22 questions for which I had answers prepared, so I close by saying that while we all would want to pull a lever to make this happen quickly, the truth is that we need a system that is rigorous, robust and evidence-based, but quicker, in recognition of the effects on these patients.

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