Accelerated Access Review

Debate between Lord Austin of Dudley and Andy Burnham

Tuesday 13th December 2016 Westminster Hall

[Ian Austin (Dudley North) (Lab)]

I beg to move,

That this House has considered the implications of the Accelerated Access Review for cystic fibrosis and other conditions.

It is a pleasure to serve under your chairmanship, Sir Alan. I start by thanking three Dudley residents—Carly Jeavons, Samantha Carrier, and Samantha’s fiancé Rob Evans—for contacting me about accessing new treatments, and for what they have taught me about cystic fibrosis. I also thank Ed Owen, the brilliant former chief executive of the Cystic Fibrosis Trust, Darren O’Keefe and all of the staff at the trust for all their help and advice in organising the debate. Finally, I thank all of the right hon. and hon. Members who have taken the trouble to come here today to speak up on behalf of their constituents who have cystic fibrosis and other long-term conditions.

Just over a year ago, I was contacted by Carly about her work with the Cystic Fibrosis Trust to push for new treatments, such as Orkambi, to be offered on the NHS. She has continued to campaign, and I had the pleasure of joining her, her father Robert and her son Corey to deliver a 15,000-name petition to Downing Street earlier this year. Carly said to me:

“Before, I was always exhausted, I couldn’t work the hours I was contracted to and I had a little boy, Corey, to look after. I couldn’t do everything I needed to do and keep on top of my health, but this drug has given me some control back. I can now do everyday things and walk to the park with my five-year-old, which I could never do before. I personally feel like I have got better and better the longer I have been on it. I have a new way of living.”

Thanks to a clinical trial of Orkambi, Carly now needs to visit a cystic fibrosis clinic less than half as frequently as she used to. That allows her to carry on working, to go on holiday with her family and to do the things that the rest of us take for granted. She continues to benefit from Orkambi, but only thanks to a compassionate use scheme offered by the drugs manufacturer, Vertex. She and other users of Orkambi need the certainty that they will be able to benefit from the drug well into the future with NHS support, which is why we are here today.

I also thank Samantha Carrier, another Dudley resident, who is campaigning to raise awareness and raise funding after her young daughter, Daisy, was diagnosed with cystic fibrosis. Samantha has seen the difference that drugs such as Orkambi can make, and she wants her own daughter to have access to them as soon as possible, so that she can live as full a life as possible. She has told me about the hours of care and support that her daughter needs every day—which makes work so much more difficult for many parents of children with cystic fibrosis.

Samantha said to me:

“I am not ashamed to say I didn’t know how to cope with it all. But one day you wake up and you realise ‘This is it now’. All we can do as a family is try to do our best by her and give her the best life we can.”

I have been very moved by Carly, Samantha and Rob’s determination for something positive to come out of these diagnoses. I think their fundraising and campaigning for the Cystic Fibrosis Trust is nothing short of inspirational.

Personalised medicines can transform life for people with cystic fibrosis and a range of diseases, including muscular dystrophy and Alzheimer’s, but without a process for appraising these medicines that is fit for purpose, patients are unable to access these innovative medicines. That is why we called for today’s debate.

Cystic fibrosis is a life-shortening inherited disease that affects more than 10,000 people in the UK. It causes the lungs and digestive system to become clogged with mucus, making it hard to breathe and digest food. The damage that cystic fibrosis causes to the lungs means that many people eventually need a lung transplant. There is no cure for cystic fibrosis but many treatments are available to manage it, including physiotherapy, exercise and nutrition. The median survival age is just 28. What people like Carly, Sam and countless other families across the country need to hear today is the hope that a way forward can be found that will bring an end to an agonising and unnecessary wait that has gone on for well over a year now.

Orkambi was licensed in November 2015. It is a first-of-a-kind personalised medicine that treats the cause, not just the symptoms, of those with a particular mutation of the genetic defect that causes cystic fibrosis. Around half of the people with cystic fibrosis in England stand to benefit. Personalised medicines offer a revolution in cystic fibrosis care. People in countries such as France, Germany and America who have been on the drug for some time are beginning to report total transformations in their health, with some improving enough to come off the lung transplant waiting list—on which one in three people with cystic fibrosis die. Clinicians in England are desperate to prescribe Orkambi. Those who are prescribing it, on compassionate grounds, report that the drug, which halves hospital admissions—that lasts for months—for people with cystic fibrosis, could help ease the severe and worsening shortage of beds on cystic fibrosis wards.

I stood in this Chamber a year ago to raise concerns that the appraisal process for Orkambi was not suited to an innovation of this kind. The existing National Institute for Health and Care Excellence appraisal system makes decisions on the efficacy of a drug based on 24 weeks of clinical trials data, but fails to take into account the long-term benefit to sufferers’ quality and length of life. The focus on measuring the benefits of a treatment in terms of quality-adjusted life years does not work for genetic diseases such as cystic fibrosis, because it massively underestimates the impact that the drugs have on quality of life over the long term. It also fails to take account of the wider benefits for society of these medicines, such as the way that they can help sufferers or their carers get into work. In short, the existing system cannot provide an accurate assessment of new treatments that offer long-term, preventive stabilisation of cystic fibrosis.

I highlighted that, due to those concerns, the Cystic Fibrosis Trust was proposing an innovative solution under which real-world, long-term data could be gathered using the UK cystic fibrosis registry. The registry already provides real-world data to health commissioners and pharmaceutical companies, so that they can monitor the efficacy of treatments.

[Andy Burnham (Leigh) (Lab)]

My hon. Friend is making an incredibly important point. I congratulate him on securing this debate, which will give hope to the many people out there who suffer with cystic fibrosis. Is he aware of new 96-week data that have recently been published that show that Orkambi slows decline in lung function by around 42%? Those data were not available to NICE when it made its appraisal. Do those data alone not make the case for a further accelerated review process on this absolutely compelling?

[Ian Austin]

My right hon. Friend is completely right; he raises a point I will make shortly. It is good that he is here to support people with cystic fibrosis in his constituency, and to bring his knowledge and experience of the national health service to bear in the debate.

The Cystic Fibrosis Trust’s proposal would provide foundations for a managed access scheme for the drug. That was in line with the interim findings of the accelerated access review, which recommended the merits of such an approach and referred to the UK cystic fibrosis registry as an exemplar. I will say more about the accelerated access review in a few moments.

As expected, seven months later NICE referred to a lack of long-term data in rejecting Orkambi for use in the NHS. That was despite Orkambi’s being proven to halve hospitalisations and NICE’s recognising it as a

“valuable new therapy for managing cystic fibrosis”

with significant clinical benefits, as well as

“wider benefits to society for people with cystic fibrosis and carers of people with cystic fibrosis.”

Policing and Crime Bill

Debate between Lord Austin of Dudley and Andy Burnham

Monday 7th March 2016 Commons Chamber

[Andy Burnham]

That is an interesting proposal, but it is the view of the Labour party in Wales. It is not yet the view of the party at UK level, but we will give it serious consideration.

Let me be clear: welcome as many of the measures are, the Bill falls short of providing what our emergency services need. It does not add up to a convincing vision for the reform of emergency services that is equal to the scale of future challenges or the threat we face as a country. Right now, our police and fire services are halfway through a decade of real-terms cuts. The Home Secretary began by claiming that her record was one of reform. The reform we are seeing is in fact the demise of the successful neighbourhood policing model that she inherited from the previous Government. She has presided over worryingly low morale across police and fire services, as is also the case—on the Health Secretary’s part—in the ambulance service. That low morale needs to be addressed.

[Ian Austin]

We all know that savings have to be made, but no one will be impressed by the Home Secretary’s complacent answers when such points were made earlier. Is my right hon. Friend aware that West Midlands police has lost 1,538 officers or 18% of the total, compared with Thames Valley police—her area—which has lost just 90 officers or 2% of the total? Is he aware that West Midlands police is set to lose another £10 million of funding, the biggest cut for any force outside London?

[Andy Burnham]

My hon. Friend makes precisely the point I was coming on to make. Whatever Ministers claim, 36 of the 43 police forces face cash cuts in the coming year, while all of them face real-terms cuts. As he has said, West Midlands police will lose £10 million in real terms—the precept does not cover that—and my own Greater Manchester police will lose £8 million. At the same time, he needs to consider the cuts to fire services, because West Midlands fire service will have a cut of 45% in its budget over the decade. In effect, the budget will halve, and the same is also true for Greater Manchester. [Interruption.] It is true. Ministers seem not to know that fire services are being cut in half. I put it to the Home Secretary and her police and fire services Minister that that prompts this question: can they be sure that their cuts to police and fire services are not exposing our big cities to unacceptable levels of risk? What assessment have they made of their capability to deal with a major incident or a Paris-style attack? Experts in the fire and rescue service would argue that their cuts have already gone too far.

Immigration Bill

Debate between Lord Austin of Dudley and Andy Burnham

Tuesday 13th October 2015 Commons Chamber

[Andy Burnham]

There have been barely any prosecutions because the Government have cut the resources devoted to enforcement. I welcome the Home Secretary’s proposal to create a director of labour market enforcement, but will she ensure that that director, whoever he or she is, gets to grips with the problem that my hon. Friend has just raised?

[Ian Austin]

The shadow Home Secretary is completely right to say that the costs and benefits of immigration are not shared across the country. Communities such as ours do not attract many millionaire American bankers, French City traders or German hedge fund managers; we have a completely different sort of immigration that puts pressure on public services. Does he agree that the benefits must be shared equally across the country to enable such communities to provide the housing, employ the teachers and all the rest of it so that we can cope with those pressures?

Education Maintenance Allowance

Debate between Lord Austin of Dudley and Andy Burnham

Wednesday 19th January 2011 Commons Chamber

[Ian Austin (Dudley North) (Lab)]

I met students at Dudley college, 78% of whom receive EMA. More than 90% of them told me that they would be unable to continue their education if EMA was withdrawn. They are not using it for luxuries but for their books, bus fare and lunch. In particular, those on vocational courses who are studying construction, catering, hairdressing and so on need to buy uniforms and equipment. That is what they are spending it on, and if it is withdrawn they will not be able to continue their education.

[Andy Burnham]

My hon. Friend represents a constituency with one of the highest take-up rates of EMA in the country, and he is absolutely right. Some of the sneering comments about recipients of EMA show a complete failure to understand what their lives are like and underestimate the determination of those young people to make a success of themselves and to get skills that will stand them in good stead throughout the rest of their lives.