Cystic Fibrosis Drugs: Orkambi

Stephen Hepburn Excerpts

Monday 10th June 2019 Westminster Hall

[Mr Stephen Hepburn (Jarrow) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Bailey. Like others, I pay tribute to the hon. Member for Sutton and Cheam (Paul Scully) for bringing about the debate and allowing us once again to give the Government a jog and tell them to get this sorted out once and for all. We are all aware of cystic fibrosis. It affects all of our constituencies. It is a life-limiting condition that affects more than 10,000 people in the UK. It is a condition with no cure as of yet, and half of those who have it will die before their 31st birthday.

We are also aware that there is a drug available. Orkambi, developed by Vertex, treats not only the symptoms associated with cystic fibrosis but the underlying causes. One of these patients is four-year-old Harriet Corr from Jarrow, whose parents Emma and Chris are here today. They desperately want a better quality of life for their daughter. They contacted me because they were frustrated and upset that Harriet could not get access to this life-changing drug as it is not available on the NHS in England. An even bigger blow to them is that if they lived an hour further north, in Scotland, Harriet could qualify for it next year. Why? The NHS in England and NICE do not deem the drug cost-effective and have spent more than two years negotiating a price, without success.

It is totally unacceptable that a country with the second highest number of sufferers, and one that leads the way in cystic fibrosis outcomes, now risks falling behind many other European countries and the USA and allowing people with the condition to become physically sicker than necessary all because an agreement on the economics of treatment cannot be reached. We all know that because of that we have had five parliamentary debates, and still there has been no action from the Government. These drugs need to be on the NHS now, because every day without them is another day of suffering for the people living with the condition.

If people want to focus on the economics, the evidence is clear. As Members have outlined, this treatment prevents the condition from escalating, thus preventing more expensive treatment further down the line. It would reduce the number of times patients used the NHS and hospitals throughout the year, which would obviously be a saving to the NHS and—more importantly—a better outcome for patients and their families.

Let us look at the human aspect of the debate. Families are well aware that access to the treatment is not a cure for the condition, but it certainly helps those affected live as normal and fulfilling a life as possible in the short time they are with us. The NICE appraisal methods fail to recognise that. How can a cost be placed on a child with cystic fibrosis and their ability to manage their condition, to go to school, to play with their friends, to go to university later on in life and get a job as well as easing the burden of care on their families and carers? Why should Harriet and her family not have a worthwhile quality of life and get to do the things many of us take for granted?

Time is running out for some patients, and we are calling on the Government to act now to resolve this matter urgently. I thank Members from across the House for pushing this case forward. I also pay tribute to the campaigners, who have fought hard, organised a petition and shouted so loudly that surely this Government, in the fifth or sixth richest country in the world, can no longer ignore them.

Oral Answers to Questions

Stephen Hepburn Excerpts

Tuesday 26th March 2019 Commons Chamber

[Caroline Dinenage]

We all miss my hon. Friend the Member for Winchester (Steve Brine), so I thank the hon. Lady for her comments.

Since prescription charges were introduced, Governments of all colours have decided that some patients should pay prescription charges to contribute to the cost of running the NHS, but almost 90% of prescription items are dispensed in the community free of charge, which I think the hon. Lady will agree is an enormous amount.

[Mr Stephen Hepburn (Jarrow) (Lab)]

6. What recent progress has been made in the discussions between NHS England and Vertex Pharmaceuticals on making Orkambi available on the NHS.

[The Secretary of State for Health and Social Care (Matt Hancock)]

On 11 March, I held a meeting with all the parties to discuss how best to ensure that people with cystic fibrosis and their families can benefit from the best drugs as soon as possible. Vertex, the National Institute for Health and Care Excellence and NHS England met on Thursday and have agreed to take those discussions forward.

[Mr Hepburn]

Does the Secretary of State support immediate interim access to Orkambi while the negotiations are going on, and has he asked NHS England, NICE and Vertex to consider this option?

Orkambi

Stephen Hepburn Excerpts

Monday 4th February 2019 Commons Chamber

[Bill Wiggin]

First, let me say how sorry I am to hear about the hon. Lady’s niece. We should take this very seriously. The figures that I have are even worse than the ones that she has laid out.

The price remains inaccessibly high, and this is entirely due to the powerful patent laws that allow pharmaceutical companies to monopolise drug production. Vertex expects to retain monopoly intellectual property protection on its cystic fibrosis drugs well into the 2030s. Analysts conservatively estimate that it will generate profits of $13 billion on Orkambi and another related drug, Kalydeco, alone. This could be used to fund further research and development—to reward its shareholders for its brilliant breakthrough and perhaps to encourage it to do more. But no, Vertex has spent $500 million on buying back its own shares. Well, that should certainly boost executive remuneration.

I am aware that provisions exist under the Patents Act 1977 for the Government to take independent action against Vertex. Crown use licensing is a powerful legal tool that can be used to safeguard public health. It can ensure the availability of fairly priced medicines in a competitive pharmaceutical market. Section 55(1) of the Act states that the Government can be granted non-authorised use of patents

“for the services of the Crown”.

That can be granted at all stages of manufacture, use, importation, sale and retention of a product. This is a legal opportunity to break the lethal deadlock that eats away at the youngest sufferers who stand to gain the most from this medicine. Crown use licensing has been used by the UK Government before, to great effect. They can suspend a patent and thereby force down the high price of particular pharmaceutical or medical equipment. For example, in 1991 the Government authorised the supply of machines known as lithotriptors for treating kidney stones. More recently, breast cancer patients have lobbied the Scottish Government to implement a Crown use licence on the drug Pertuzumab. Crown use licensing could similarly be used to overturn the patent monopoly on Orkambi by Vertex.

[Mr Stephen Hepburn (Jarrow) (Lab)]

I applaud the hon. Gentleman for his initiative and guarantee him my 100% support. Does he not agree that this drug should be supplied on the NHS? We are all born equal in this country, but unfortunately if you are a millionaire you can pay for it but if you are working class like my constituents you cannot get it. I have constituents—Emma and Chris Corr and their young daughter Harriet—who are considering leaving England so as to be able to get the care that they need. Does he agree that this country is unfair?

--- Later in debate ---

[Steve Brine]

In response to the hon. Gentleman and to one of the other interventions about compromise and meeting in the middle—there is lots of talk about compromise at the moment—I suggest that the £500 million offer is a pretty good first step from the Government. I suggest that that is a pretty good attempt to meet in the middle. That is our constituents’ money.

[Mr Hepburn]

Will the Minister give way?

[Steve Brine]

I will not.

The hon. Member for Dudley North (Ian Austin) talked about breaking the impasse and breaking the deadlock. I said in response to the point from my hon. Friend about Crown use that I have not closed the door on it tonight. I am not trying to put obstacles in the way. I have been asked a question at the Dispatch Box about the practical realities of making this policy move, and I am setting out for the House’s benefit—on the record for everybody listening and for Members—the practicalities.

My hon. Friend talked about use of similar mechanisms by other countries. It is always interesting to understand what other countries are doing and what they are considering and implementing in their health services—there is much that we can learn from each other. However, I cannot comment on the circumstances that would prompt another country to take these steps; other countries have different health systems, and they do not have NICE. We have said—the hon. Member for Dudley North touched on this in his intervention—that we are looking to review the NICE processes, but we should also remember that NICE is respected around the world. If we did not have NICE, we would probably have to invent NICE—that is the truth for Ministers in this Government, as it would have been for Ministers in the previous Government.

I understand the sense of frustration in this Chamber.

[Mr Hepburn]

Will the Minister give way?

[Steve Brine]

I said I would not.

I think the House gets a minuscule sense of my frustration about the situation. I want this sorted. I have constituents who contact me about this too. I am sure the key question we are all thinking about is, where does this leave us now? I suppose that is the point of the intervention that the hon. Member for Dudley North made. I just want to be clear that we are still taking a very close interest in this matter.

The reason I responded so robustly to the earlier intervention about Ministers getting their hands dirty is that I do not think that is particularly helpful. Ministers are not the customer here; NHS England is the customer, Vertex is the seller and NICE is involved. Ultimately, we have made a very, very generous offer to this company, and I think that it should look again, and look long and hard, at its moral obligations as much as anything else, as somebody mentioned in their intervention.

Of course I recognise the impact that these protracted discussions are having on the daughter of my hon. Friend’s constituent. I heard the lady on the “Today” programme this morning on Radio 4, and it breaks our hearts to hear these stories. Of course we want this sorted. For many of the patients who suffer from this debilitating disease, including constituents of my own, it is extremely disappointing that Vertex rejected the final offer made by NHS England, as well as rejecting the opportunity for NICE to appraise its new medicines.

I have talked about the £500 million over five years; it is the largest ever commitment of this kind in the 70-year history of the NHS—it is not insignificant. It is a huge sum of money and of course NHS England must also fund other drugs for other distressing diseases. My hon. Friend made reference to that. I do not often get asked to come and answer Adjournment debates about spending less on precision drugs for other conditions. There are many, many other drugs that demand our funds. Vertex must re-engage with the NICE appraisal process. We understand the frustration of the CF community. However, it has been made crystal clear to Vertex that its drugs need to be priced responsibly and that any reassessment of Orkambi’s effectiveness must be carried out by NICE’s established process.

The position of Vertex is unreasonable. It is unacceptable to us, to patients and to our constituents. I know that other countries also worry for their patients because of Vertex’s unfair pricing of this drug, so let me put on record once again that Vertex should and must take up the very generous offer that NHS England has made. That offer will improve the lives of eligible cystic fibrosis patients and their families. For all the reasons I have set out, it is far and away the quickest and simplest way to resolve this matter.

Question put and agreed to.

Oral Answers to Questions

Stephen Hepburn Excerpts

Tuesday 23rd October 2018 Commons Chamber

[Matt Hancock]

Yes, my hon. Friend is absolutely right. In fact, the number of EU nationals working in the NHS has now risen by more than 4,000 since the referendum, and we welcome them all.

[Mr Stephen Hepburn (Jarrow) (Lab)]

13. What recent progress has been made in negotiations between NHS England and Vertex Pharmaceuticals on making Orkambi available on the NHS for people diagnosed with cystic fibrosis.

[The Lord Commissioner of Her Majesty's Treasury (Nigel Adams)]

It was disappointing that in July and August, Vertex, the manufacturer of Orkambi, rejected the final offer made by NHS England, as well as rejecting the opportunity for the National Institute for Health and Care Excellence—NICE—to appraise its new medicines, as is required for all companies seeking routine NHS funding for their products. Vertex must re-engage with NICE and NHS England, and I am encouraged that it attended a meeting with NICE on 4 October to discuss next steps.

[Mr Hepburn]

As the Minister knows, Orkambi is available for cystic fibrosis sufferers in Ireland, Greece, Denmark and a host of other countries around the world, so when will it be available for cystic fibrosis sufferers in this country?

[Nigel Adams]

I know that the hon. Gentleman takes a keen interest in this subject and that he campaigns assiduously on behalf of his constituents in this regard. He is right to suggest that Ministers are keeping a very close eye on these negotiations, and we urge Vertex to consider NHS England’s fair and final offer. However, it is absolutely right that we have a system—introduced by the Labour party—in which experts, not politicians, determine the fair price for a drug, based on robust evidence.

 Orkambi and Cystic Fibrosis

Stephen Hepburn Excerpts

Monday 19th March 2018 Westminster Hall

[Mr Stephen Hepburn (Jarrow) (Lab)]

It is a pleasure to see you in the Chair, Mr Evans.

I thank hon. Members on both sides of the House who are here to push this great case forward. I pay tribute to my hon. Friend the Member for Dudley North (Ian Austin), who organised a very constructive roundtable meeting where we learned a hell of a lot. I also pay tribute to all the campaigners, some of whom are represented today. They fought hard, got the petition organised and had such a loud voice that Parliament has not been able to ignore them.

We are all here because we want Orkambi to be made free on the NHS. It is a drug that works, improves lives and gives hope, so there is no reason why it should not be available. We agree that NICE’s 2016 decision to class Orkambi as not cost-effective for the NHS was wrong. Frankly, the Minister is in a position to get round the table with the drug companies, NICE and the NHS to resolve this and break the deadlock.

[Margaret Greenwood (Wirral West) (Lab)]

My hon. Friend is making a really good speech. A constituent—a proud and loving grandad—came to my surgery with two sets of photographs of his granddaughter, who is nearly six. One photograph was of a lively little girl, full of energy, and the other was of all the medication that she has to take every single day. The imagery could not have been starker. Does my hon. Friend agree that when someone is nearly six, a year is a very long time to wait for change, and the Minister should get a move on?

[Mr Hepburn]

I agree entirely and am pleased my hon. Friend has repeated my earlier plea to the Minister.

It has been said that Orkambi is recognised in a lot of countries—I do not want to go through the list, because there are many. We are getting left behind. Imagine what it is like to be a sufferer and to be told, “There is something out there that will improve your life and your family’s life, but, sorry, it is just not cost-effective.” Imagine how that makes them feel.

I have two constituents down here today: Emma and Chris Corr. They have a three-year-old daughter who has undergone more hospitalisations, more medical treatments and more operations than the vast majority of people will go through in the whole of their lives. All Emma and Chris want is to give their daughter a future and ensure that she is not limited in her life chances. I will be brief, but my plea is to think of the likes of Harriett: let her go to school and get a full-time education, without impediment; let her get qualifications; let her get a job; and let her live a long life. The alternative is unthinkable, whereby Harriett will have a deteriorating lifespan, leading to an early death, which I am sure we would all agree is unacceptable for anyone.

The final decision is with the Minister. I hope he recognises the unity of purpose in the House and acts immediately.

National Health Service

Stephen Hepburn Excerpts

Wednesday 21st January 2015 Commons Chamber

[Mr Stephen Hepburn (Jarrow) (Lab)]

If anybody wants to see the direction in which this Government are going with the NHS and what impact their policies are having on it, they should come up to my constituency.

Let us think back to the Prime Minister’s weasel words before the last general election—that the NHS was “safe” in his hands and that he wanted the initials NHS to be synonymous with and to define his name. Then let us look at what is happening today. It is a wonder he can lie in bed straight at night, as we see the NHS in crisis—the only thing it is doing is crying out SOS. He promised that there would be no reorganisation, but what do we get? We get the biggest reorganisation since the NHS was formed, and one set up for one thing and one thing only: to privatise the NHS. Some £3 billion has been spent on that reorganisation and the bill is going up—£3 billion that should have been spent on the sick instead of on P45s going out to thousands of nurses when cuts are implemented. It is disgraceful.

Ministers have only to come to Jarrow to see what is happening. In my local hospital three elderly patients wards have closed, a minor injuries unit has closed and now, to make matters worse, a popular walk-in centre, which sees over 27,000 patients a year, is to close. The closure is opposed by everybody in the area—the council, the trade unions, the patients and the staff.

[Mr Jim Cunningham (Coventry South) (Lab)]

Has my hon. Friend noticed that the Government are running true to form, like the previous Conservative Government, when we had bed blocking and people sleeping on trolleys because they could not get a bed in hospital? Has he noticed particularly that local authority budgets could have provided for the elderly and prevented bed blocking?

[Mr Hepburn]

That is exactly the point that the shadow Secretary of State made in his opening speech.

As we heard earlier, local managers are not listening. They are stooges of the Government and they are carrying out the cuts without listening to local people. It is disgraceful. They are not incompetent, and nor are the Government—they know exactly what they are doing. There is a deliberate effort to sabotage the NHS by piling those 27,000 patients a year on to the local doctors.

[Andy Burnham]

I am listening carefully to what my hon. Friend says. His walk-in centre, like mine, was one of the first to open and is greatly valued by the community. I make this offer to him today: if he and his community can keep the campaign going and keep that centre open, and if I am the Secretary of State in May, it will stay open for good.

[Mr Hepburn]

I am sure people in the area are extremely grateful for that statement of support and commitment and that pledge from the shadow Secretary of State. I only hope he will become Secretary of State.

The Government and the management of the NHS are not incompetent. They are acting deliberately. The 27,000 patients in Jarrow who now go to the walk-in centre will have to go to the doctors’ surgeries, where it is difficult enough already to get an appointment. That will only exacerbate the problem. When they go down to A and E, which is doing a terrific job, the situation will only get worse. The Government know exactly what they are doing. They are trying to sicken people of the NHS so that they can turn round and say, “The NHS is not working. We will bring in the private sector to help out and to take it over.” That is the policy of this Government.

[Steve Baker (Wycombe) (Con)]

Under the previous Government, my predecessor was not able to prevent the closure of A and E. If Labour is in government, I shall remember his speech today and the promise that was given to him, and I shall watch closely what happens.

[Mr Hepburn]

I can assure the hon. Gentleman that after that pledge I will certainly be watching the shadow Secretary of State when he gets in, to make sure our walk-in centre is still going.

Who gains from the present situation? Only two lots of people—the Tories, many of whom are up to their necks in involvement with private health care providers, and the profiteers, the health care providers, who are going to come in and cherry-pick the best services so that they can make profits. I welcome the shadow Secretary of State’s statement and commitment today. It will boost the morale of the people of the north-east who are so desperate to keep the service.

[Rehman Chishti (Gillingham and Rainham) (Con)]

The hon. Gentleman just asked the shadow Secretary of State whether his walk-in centre would be kept open and the answer was yes. However, we should not look at future promises. We should look at the past and what was done under the previous Administration. In 2006, Medway hospital in my constituency had the seventh worst mortality rate, yet nothing was done. We must judge Labour by what it did, not by future promises.

[Mr Hepburn]

We must remember that it was the Labour party that created the NHS, that saved the NHS in 1997 and that tripled spending on the NHS in our last period in government. It is the Labour party, when we get in, that will return the NHS to the people—unlike the Tories, who would return the NHS to the profiteers who fund them and their organisation. The only way to get rid of the crisis in the NHS is to get rid of the Tories.

Oral Answers to Questions

Stephen Hepburn Excerpts

Tuesday 21st October 2014 Commons Chamber

[Dr Poulter]

That sounds like a commendable programme. It is good to hear that my hon. Friend’s local trust, where there was a shortage of nurses, is facing up to that and employing more nurses to ensure that patient care is as good as it can be.

[Mr Stephen Hepburn (Jarrow) (Lab)]

16. What recent representations he has received on hospital walk-in centres.

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

Ministers have received 34 representations regarding NHS walk-in centres.

[Mr Hepburn]

The NHS walk-in centre in Jarrow sees more than 27,000 people a year, yet the local management propose to close it to pay for the reorganisation that the Government have brought in. Will the Minister intervene on this occasion, overrule the manager and back the local people?

[Jane Ellison]

I find the hon. Gentleman’s question slightly mystifying. Responsibility for walk-in centres was passed to local commissioners in 2007, and as I understand, South Tyneside CCG is looking to improve urgent care in the area and reduce reliance on A and E. It reckons that 33,000 people did not need treatment in 2012-13 in the local A and E, so I quite see why it would want to review that. I urge the hon. Gentleman to engage with the consultation, and to get involved with some of the excellent north-east public health projects such as North East Better Health at Work, which is an award-winning scheme that would do a lot to relieve pressure on services.

Ebola

Stephen Hepburn Excerpts

Monday 13th October 2014 Commons Chamber

[Mr Hunt]

I am not sure that I entirely understood the hon. Gentleman’s question, but the incubation period is 21 days, so if we identify through the screening and monitoring process someone who is higher risk, we will want to stay in touch with them for that period of 21 days on a daily basis to make sure that we are monitoring their temperature and that we get help to them as quickly as possible if they need it.

[Mr Stephen Hepburn (Jarrow) (Lab)]

I welcome the introduction of screening at various London locations, but what about Newcastle, which runs numerous flights every day to the airports that act as hubs for these west African countries, and obviously there is passage that way?

[Mr Hunt]

The hon. Gentleman is absolutely right. We have numerous ports of entry to the UK. We are one of the most international countries in the world, and London is one of the most international cities in the world, so the actions that we take must be proportionate to the risk. The risk is currently low, so the advice is that having no screening procedures at those airports is proportionate to the risk now, but we are taking this precautionary approach, starting with the Heathrow, Gatwick and Eurostar terminals, because we want to prepare for a possible increase in that level. Were that to happen we would of course look at whether that screening process should be expanded to regional airports.

Oral Answers to Questions

Stephen Hepburn Excerpts

Tuesday 21st February 2012 Commons Chamber

[Mr Lansley]

That is a sensible question, and precisely why we are pursuing, as we said in November last year, a new approach to public-private partnership that does not entail the extreme costs, delays and burdens that past PFI projects have left. We are working with projects—for example, one at Alder Hey in Liverpool—to ensure that they demonstrate enhanced value for money compared with past PFI projects.

[Mr Stephen Hepburn (Jarrow) (Lab)]

15. What recent representations he has received from health care professionals on the Health and Social Care Bill.

[The Parliamentary Under-Secretary of State for Health (Anne Milton)]

The Government have received a wide range of representations throughout the passage of the Health and Social Care Bill, including from health care professionals, the public and voluntary bodies, and the trade unions.

[Mr Hepburn]

The vast majority of people, whether they work for or use the health service, see the Bill for exactly what it is: a Tory plan to privatise the national health service. When will the Minister listen to people, stop trying to pull the wool over their eyes—it is not working—and scrap this tawdry Bill?

Oral Answers to Questions

Stephen Hepburn Excerpts

Tuesday 8th March 2011 Commons Chamber

[Paul Burstow]

I thank the hon. Gentleman for his question, and I share his satisfaction and pleasure at the successful treatment that his constituent’s son received. Certainly, on cancer survival rates and cancer outcomes, we need to make sure not just that we are delivering for the most typical cancers, but that we have good processes that ensure early diagnosis of all cancers.

[Mr Stephen Hepburn (Jarrow) (Lab)]

3. What recent representations he has received on his proposed reforms of the NHS.

[Tony Lloyd (Manchester Central) (Lab)]

11. What recent representations he has received on his proposed reforms of the NHS.

[The Minister of State, Department of Health (Mr Simon Burns)]

The Government received more than 6,000 responses to the White Paper consultations. As a result, we have significantly strengthened both our approach to implementation and our proposals in the Health and Social Care Bill. We continue to engage widely across the health sector on our modernisation plans.

[Mr Hepburn]

Is not it only a Tory Government who can bring a system into the NHS whereby doctors get paid more for giving less treatment to their patients? What does the Minister have to say to the chairman of the BMA’s GP committee, who described the plans for the quality premium as “appallingly unethical”?

[Mr Burns]

I have to admire the hon. Gentleman’s sheer gall, because, of course, it was his own Government’s 2004 contract with GPs that enabled them to do less work for far more money.