Orkambi and Cystic Fibrosis

Crispin Blunt Excerpts

Monday 19th March 2018 Westminster Hall

[Crispin Blunt (Reigate) (Con)]

I join colleagues in congratulating my hon. Friend the Member for Sutton and Cheam (Paul Scully) and the hon. Member for Dudley North (Ian Austin) on promoting this cause and on drawing parliamentary attention to it in an extraordinary way in this debate. I have a constituent, Sharon Cranfield, whose 16-year-old daughter, Jessica, has cystic fibrosis. This is about the grassroots and all those people who are affected. She is but one of those who have done an amazing job in promoting this petition and in campaigning for access to Orkambi for the 3,000-plus people who could benefit from it in England.

Last summer, Jessica was given access to Orkambi on a compassionate use scheme for those with the lowest lung function, and her quality of life has been transformed. The medicine reduces the mucus that builds up in the lungs, causing infection and damage. She is already benefiting from fewer exacerbations, which, before the treatment with Orkambi, caused hospitalisations about four times a year for up to a month at a time, taking her out of school. Judging by stories such as Jessica’s and the growing body of evidence that shows that the medicine is working effectively to keep children and young adults what cystic fibrosis out of hospital, there is a clearly a very strong case for making it available on the NHS.

Although many other countries have moved to reimburse this medicine in their healthcare systems, in the UK Orkambi remains unfunded more than two years since it received its European licence. The UK is falling behind our OECD peers in terms of speed of adoption, overall uptake, and expenditure on the newest medicines, and it is becoming increasingly apparent that the ways in which NICE assesses the cost-effectiveness of medicines are outdated and insufficiently flexible for precision medicines for rare diseases with relatively small patient populations, such as Orkambi.

[Bob Stewart]

On my good friend’s excellent point, I wonder how much it costs to put a child in hospital for a month. I am pretty sure it is not far off £100,000.

[Crispin Blunt]

My hon. Friend leads me to my next point. How do we wish to value better and longer life for those with cystic fibrosis? How do we wish to value the savings to the NHS of reducing the 9,500 hospital admissions and the 100,000-plus hospital bed days a year? How do we wish to value the societal and economic benefits of helping young people grow up to play a fuller part in their education and employment, and the benefits to their families and care givers? How do we wish to value and reward the risk and innovation that goes into researching and developing breakthrough medicines?

NICE applies rigid health economics methodologies through its standard technology appraisal, which is designed not for rare diseases and specialised services but for primary care medicines that treat large populations with well-known diseases. Are we content for NICE to apply a threshold for valuing life that has not changed since it was established in 1999, even though healthcare inflation has almost tripled what we spend on healthcare?

My right hon. Friend the Member for Chingford and Woodford Green (Mr Duncan Smith) referred to social impact bonds and payment by results. I do not envy those who have to make those evaluations, such as the Minister and NICE. The costs fall on NICE and the health service budget, and the benefits are often felt elsewhere, not least in patients’ quality of life. Our society and the Government have to become more sophisticated about early investment. We must be able to measure the savings that come from having fewer hospital admissions and from the greater contribution to society that people who suffer cystic fibrosis will make if we improve their quality of life and reduce the degradation of their lungs.

Does the Minister accept that, although NICE has a specific evaluation process for highly specialised technologies for ultra-rare diseases, it is missing a framework for other rare diseases and precision medicines that treat sub-groups of rare diseases? He will no doubt point to initiatives such as the accelerated access review and the sector deal for the life sciences industry. I welcome those schemes in so far as they aim to address some of the access challenges, but they count for little if there is not a willingness to find innovative and flexible approaches to introducing innovation in the NHS. If we get this right, the UK has huge opportunities better to serve NHS patients and attract industry investment in clinical trials.

Vertex, the manufacturer of Orkambi, recently proposed a portfolio arrangement to NHS England, as we have heard from many colleagues, whereby all its current and future cystic fibrosis medicines could be made available to eligible patients at a fixed cost to the NHS, irrespective of the number of patients treated. Vertex wants to work with NHS England and NICE to put a long-term arrangement in place, as it has already done in Ireland. As the company introduces new medicines and line extensions, patients will get rapid access to the most suitable products for them upon regulatory approval, and the NHS will have budget certainty. Vertex expects to develop therapies that will treat 90% of cystic fibrosis patients within seven years.

In the light of the company’s proposal and the strength of feeling expressed in the petition and by colleagues in this debate, will the Minister look at mandating NHS England and NICE to prioritise discussions with Vertex to find an innovative and sustainable funding solution? It gives me hope that the offer that Vertex found unacceptable last Friday included a possible portfolio approach. It failed simply because NICE was not prepared to increase the resources it already pays for existing drugs, not including Orkambi. That plainly meant that the offer could only be unacceptable to Vertex, given that it is proposing new treatments that are going to treat 10 times as many patients as are being treated by the drugs currently available.

This is urgent. As my constituent, Sharon Cranfield, said to me:

“Each day of delay is additional delay of ‘irreversible lung damage’”

for those with treatable cystic fibrosis.

Organ Donation (Deemed Consent) Bill

Crispin Blunt Excerpts

2nd reading: House of Commons
Friday 23rd February 2018 Commons Chamber

[Mr Robinson]

I am grateful to my hon. Friend. It was his Bill that sparked my personal interest, and I pay great tribute to the work he did in preparing that Bill, which we have adopted almost in its entirety. He will be pleased to know that we are hopeful that his Bill—from the beginning, as it were—will now find its way alongside my own on to the statute book; I know that will give him great pleasure. What he says about that individual case is certainly true. The positive news from a cautious assessment from the NHS is that, provided the opt-out system—the quintessential starting point for all these forward projections—is introduced and backed up with the necessary limited revenue and capital spending, up to 500 lives a year could be saved by deemed consent.

[Crispin Blunt (Reigate) (Con)]

I am delighted to appear as one of the supporters of the hon. Gentleman’s Bill, and am very pleased to have my name on it. I hope he will be able to look at just one thing in Committee: the issue of deemed consent involving people who lose capacity towards the end of their lives. I hope there will be more clarity in Committee to enable people who have made the decision that they want to make their organs available to do so, when just their brain is no longer of much use to anybody else and they do not have the capacity. I hope the Bill will be clear about such circumstances when people lose capacity towards the end of their lives but when the rest of the body can still be of use to others.

[Mr Robinson]

I thank the hon. Gentleman for his intervention and the fact that he agreed to be a supporter of the Bill—his name appears on the face of the Bill, he will be pleased to note. He raises an area of great concern, but it is something we will have to deal with in Committee; I am sure he will agree that it is not for Second Reading, so I will not go further into it now.

Drug Addiction

Crispin Blunt Excerpts

Wednesday 22nd November 2017 Westminster Hall

[Crispin Blunt (Reigate) (Con)]

It is a pleasure to serve under your chairmanship, Mr Gapes. It is long overdue. It is also a pleasure to follow the right hon. Member for North Norfolk (Norman Lamb). I congratulate him on his speech. I agree with his analysis entirely. I also congratulate my hon. Friend the Member for South Thanet (Craig Mackinlay) on raising this issue. He is right to point out the dramatic risk of fentanyl-associated harm that is perhaps coming our way following what is happening in the United States.

Any examination of the global evidence shows that the costs my hon. Friend pointed to, financial and human, are infinitely higher than they should be owing to the global policy of prohibition and criminalisation of drugs since the 1961 UN single convention on narcotic drugs, which has been an unmitigated global public policy disaster. He rightly drew attention to the dangers of drug-driving and his concern at the increasing number of road deaths caused by drug-driving, as in the United States. That will require strong enforcement action to catch, warn and punish offenders, in the same way as drink-driving here in the UK has met with effective policing and societal attitude changes.

[Jim Shannon (Strangford) (DUP)]

Will the hon. Gentleman give way?

[Crispin Blunt]

Forgive me; I am short of time.

I come to this debate from the criminal justice perspective, having seen for myself as Minister for Prisons and Criminal Justice the time and costs incurred by the police, courts, prisons and probation service in managing the effects of drug-related crime. My hon. Friend the Member for South Thanet also drew attention to the problems of cannabis, particularly street cannabis, which, with its high levels of tetrahydrocannabinol, or THC, is more potent and liable to cause schizophrenia in long-term users.

However, those looking to use cannabis recreationally often have little to choose from and have no idea what their cannabis, acquired on the street from drug dealers, has in it. Legalisation and regulation would allow consumers to access less harmful forms of cannabis with lower levels of THC and higher levels of cannabidiol, or CBD, giving the desired high, in just the same way as drug users of tobacco and alcohol can be assured of the regulated quality and provenance of their products, together with the health warnings and all the necessary restrictions on advertising and sales that a properly regulated market can deliver.

Licensing and regulation proportionate to the risks of each type of drug and signposting users to services when they get into trouble would be the right place for public policy if we followed the evidence of what works. At a stroke it would deliver the massive good of eliminating the huge costs associated with criminal possession and supply. By permitting a legal but regulated market, we would decouple hundreds of millions of consumers around the world—millions in the UK alone—from funding and facilitating a world of criminality.

Just as prohibition in 1920s America provided a financial basis for organised crime to flourish in American cities, so our policy of prohibition has gifted an industry worth half a trillion dollars a year to serious and organised criminals producing and supplying untested substances. Their interest is hardly the health of their consumers, but far more to produce the addiction that will sustain a vastly lucrative business model.

Alongside the addiction, we then have to deal with the awful consequences of drug market violence as gangs and dealers vie for control of the trade, quite apart from the enormous amount of the lower-level criminality of burglary and other acquisitive crimes as addicts seek to fund their addiction. As well as keeping criminals, many of them young people, out of drug supply, licensing and regulation allows us to tackle the health-related harms associated with drugs and drug addiction that my hon. Friend was right to draw attention to. Criminalisation means that users are hidden from health practitioners, and there is a lack of guidance about how to find and access services. Taxation of sales by licensed retailers would pay for better prevention, treatment and public health education, available at the point of purchase—a dispensing pharmacist, for instance.

Colorado has raised half a billion dollars in state taxes and fees since it licensed recreational cannabis in 2014. The right hon. Member for North Norfolk referred to the the Home Office evaluation of its own drug strategy, which states:

“There is, in general, a lack of robust evidence as to whether capture and punishment serves as a deterrent for drug use”.

If we translate that out of bureaucratese, that means we know current policy does not work. Since we have been fighting the war on drugs for more than half a century, it might now be an idea to examine the evidence. So I say to my hon. Friend the Member for South Thanet, instead of doubling down on a failing policy and demanding yet more higher sentences for particular parts of the supply chain—in the example he gave, the failing policy has led to the highest level of opioid drug deaths since records began—we should learn from decriminalisation and public health approaches in other countries.

In Portugal, for example, where the possession of small amounts of drugs has been decriminalised since 2001, a step well short of licensing and regulation, usage rates are among the lowest in Europe, and drug-related pathologies, such as blood-borne viruses and deaths due to misuse, have decreased dramatically. Compare the drug mortality rate of 5.8 per million in Portugal with Scotland, where it is 247 per million. The Portuguese state offers treatment programmes without dragging users through the criminal justice system, where it becomes harder to manage addiction and abuse. I can tell my hon. Friend, drawing on knowledge of the effort to establish drug-free wings in prisons, that it is not easy to do. I accept that it is a perfectly sound policy objective, but do not think for a minute that there is a magic wand to deliver a part of the prison system that will be proof against drugs getting in.

In the criminal justice system, as I can testify from my own experience, it is hard to manage addiction and abuse. The reshaping of our drugs policies should be informed by the growing body of evidence that will come in from the legalisation of cannabis sales in several US states and, from next July, in Canada. We will be able to learn, too, from the Netherlands, Switzerland, Germany and others with drug consumption rooms, an example of the kind of regulation we could deliver around heroin consumption in supervised, safer environments where, as the right hon. Member for North Norfolk said, no one has ever died of an overdose. So we must listen to the Global Commission on Drug Policy, which seeks a balanced, evidence-based approach. The UK could have a royal commission to make evidence-based policy recommendations free of politicians’ trite response, “Drugs are bad; they must be banned.” That can give us a route to reframing the debate on drugs and finding evidence-based policy approaches that will truly reduce the costs of addiction, both financial and human.

[Mike Gapes (in the Chair)]

Two hon. Members have indicated a wish to speak and I should like both to get in, but if they are to do so each needs to speak for no more than four and a half minutes.

Junior Doctors’ Contract Negotiations

Crispin Blunt Excerpts

Monday 8th February 2016 Commons Chamber

[Mr Speaker]

I am sure that nobody who toddled into the Chamber after the urgent question started would expect to be called. That would be quite out of keeping with our parliamentary traditions. I think I need say no more.

[Crispin Blunt (Reigate) (Con)]

I wonder whether the Minister can help me. The messaging I have heard from the BMA is that the dispute is nothing to do with pay. We have heard the issue described as a “nut” by the shadow Secretary of State, yet it has led to a national strike for the first time in 40 years and we face industrial action again. What is going on here?

[Ben Gummer]

That is a question I am increasingly asking of those in the BMA’s leadership. They have agreed with Sir David Dalton that the remaining issue is about pay. Having said for several months that it was not about pay, they have now, in the end, come clean and said that it is about pay. That is what we are dealing with: pay rates for plain time and for Saturdays, where they wish for preferred rates over nurses and other “Agenda for Change” staff.

Care Bill [Lords]

Crispin Blunt Excerpts

Tuesday 11th March 2014 Commons Chamber

[Andy Burnham]

That is why I say, “Thank God for the people of Lewisham.” The Government may well have got away with it if they had picked on a community that does not know how to fight like my hon. Friend’s community. I say in all seriousness that they did a service for every community that is worried about its hospital services. That fight inspired everybody. He is right that the arrogance is breathtaking.

We have not had a White Paper or an explanation of why the Government have tried to misappropriate these powers. In the absence of information, mistrust is building about the Government’s intentions. Why are they doing this? It seems to many people that they would not be driving these powers through today if they did not have every intention of using them to the full. It will not have escaped people’s attention that financial problems are building in the NHS, with the King’s Fund predicting that more than one in five hospitals will end this year in deficit. The Labour party has today identified 32 communities where there are entrenched financial problems and that could be at risk of imposed change if clause 119 passes.

The Minister must answer a straight question: are any plans being worked up in the Department of Health, NHS England or Monitor to begin an administration process in any of those areas or in any other parts of the country if the clause passes? The hon. Member for Stafford (Jeremy Lefroy) made a similar point a moment ago. Indeed, he went further and said that there should not be a further administration process. I hope that the Minister will listen to that point. The House deserves an honest answer to that question today before it can be expected to give its consent.

[Mr Crispin Blunt (Reigate) (Con)]

As a constituency MP, I have seen hospitals that are well supported by their community, and which happen to be in Labour marginal seats, create powerful political forces. As a result, decisions were made by two of the right hon. Gentleman’s predecessors that materially damaged the delivery of secondary health care in my constituency. He will therefore understand why I am considerably happier with the arrangements in the Bill, which take both care and money into account. The Secretary of State will have the powers that he needs to make sense of the delivery of health care so that it is not at the mercy of the kind of decisions that his predecessors took.

[Andy Burnham]

Before the hon. Gentleman makes that argument, I suggest that he speaks to the people of Lewisham to see whether they think that the process was fair. I suggest that he goes and speaks to the people of Stafford to see whether they think that the process has been fair. I do not know how he can argue that the new process is better than the original process, whereby there was always local engagement and through which elected Members had a chance to refer matters to the Independent Reconfiguration Panel.

Oral Answers to Questions

Crispin Blunt Excerpts

Tuesday 22nd October 2013 Commons Chamber

[Mr Hunt]

Doctors should be able to hold Ministers to account, as should the public. That is why they will be pleased to know that we protected the NHS budget, and did not follow the advice of the right hon. Member for Leigh (Andy Burnham), who wanted it cut from its current levels.

[Mr Crispin Blunt (Reigate) (Con)]

While we are always of course keen to hold doctors to account for their mistakes, I trust that we will be equally keen to reward them for examples of really good practice, such as those my right hon. Friend will see on Thursday when he makes his very welcome visit to the East Surrey hospital. I commend to him the work of Dr Ben Mearns and his emergency and acute team, who demonstrate good practice and also make it transparent to the rest of the national health service.

[Mr Hunt]

I am greatly looking forward to visiting my hon. Friend’s hospital on Thursday and going out on the front line. I agree that we need to celebrate success. This has been a difficult year for the NHS as we have learned to be much more transparent about problems when they exist, but one of the advantages of having a chief inspector is that his team will be able to identify and recognise outstanding practice, so that everyone will understand that, as well as some of the problems that get more attention, brilliant things are happening throughout our NHS.

NHS Commissioning Board

Crispin Blunt Excerpts

Tuesday 5th March 2013 Commons Chamber

[Norman Lamb]

The right hon. Gentleman’s own Government had guidance in place precisely to address anti-competitive behaviour. Let me again reiterate that these regulations will not introduce compulsory competitive tendering. The amendments that we will table will make it absolutely clear that the power rests with clinical commissioning groups, and not with the Government, Monitor or anyone else.

[Mr Crispin Blunt (Reigate) (Con)]

My hon. Friend will have heard the charge of audacity from the shadow Health Secretary, whose expertise and qualities in this area should be acknowledged to place him in a league of his own. If there is still no clarity on the competitive position, which has not moved on from that of the last Administration, the responsibility lies precisely over there, on the Opposition Benches.

[Norman Lamb]

I take the point, but I again reiterate that the rules and guidelines for commissioners will remain exactly as they were under the last Government and under the right hon. Member for Leigh as Secretary of State.