10.36 am

Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)

It is an honour to serve under your chairmanship, Sir Alan. I thank my hon. Friend the Member for Dudley North (Ian Austin) for securing this important debate. I note that as he said, it is just over a year since he first brought to the House a debate on cystic fibrosis.

I appreciate all hon. Members who have attended and spoken in this debate to show their support for the cause; it is one that we must urgently get right. Members have shared many moving cases involving their constituents whose lives Orkambi could save and would certainly transform. My hon. Friend the Member for Dudley North mentioned Carly Jeavons and Sam and Rob, the parents of Daisy. The hon. Member for Strangford (Jim Shannon) spoke about Evie-May, and my hon. Friend the Member for Bristol East (Kerry McCarthy) mentioned her niece Maisie. My right hon. Friend the Member for Leigh (Andy Burnham) spoke about his office manager Karen Aspinall and her son, as well as Philip and his sister Melissa, who sadly died. Philip believes that Orkambi would have helped his sister and would certainly help him, as he also suffers from cystic fibrosis. Those people believe that their lives would be transformed by Orkambi. I believe that too, and the evidence supports it, as we have heard in detail.

I thank all hon. Members who have spoken in this debate, including the hon. Member for St Ives (Derek Thomas), the hon. Member for Bath (Ben Howlett) and ​my hon. Friend the Member for Cambridge (Daniel Zeichner), for their excellent contributions, as well as the many others who have made valuable interventions. I also thank the Cystic Fibrosis Trust for its dedicated campaigning on the issue, and the 20,000 people who have been involved in its survey, in the digital debate here in Parliament, and in petitions and e-action. The concerns and the need for action are clear, and it is up to the Minister to give all those people beyond this place the answers that they need.

In my contribution, I will set out why the Opposition want to see the Government do more on innovative drugs, through case studies involving Orkambi. I will touch on issues of access to Orkambi and other drugs for those living with cystic fibrosis and expand into the recommendations of the accelerated access review, which can do much to address many of the issues involving access to new drugs.

Although it is welcome that the prescription drug Kalydeco was given the go-ahead by NHS England last week for two to five-year-olds as part of re-prioritisation, Orkambi remains an issue. There is currently a deadlock in negotiations between the pharmaceutical company Vertex, the Government and NHS England for the drug to be accessible to the 2,700 people who stand to benefit from it. As we have heard in detail today, that is all down to rejection of the drug under NICE’s appraisal system because there is a lack of long-term data. Although it is welcome that NICE recognises the treatment as effective in managing cystic fibrosis, it is clear that we desperately need a new system under which drugs can be better accessed, especially those that show that they can benefit patients. We have also heard about new data that NICE did not take into account and that would have showed 42% effectiveness.

Orkambi has been shown to halve the amount of hospitalisation of cystic fibrosis sufferers, and 96-week data published recently showed that it can help to slow lung function decline by 42%. The data are also backed up by anecdotal evidence from people who have accessed Orkambi through the compassionate use programme and are beginning to report transformations in their health—some are reporting enough improvement to come off the lung transplant list. That information is all positive. It should be made better available for consideration as part of the appraisal process; it should also form part of the negotiations between Vertex, the Government and NHS England. However, when we see a deadlock, all of that information is for naught. Thousands of people are suffering irreversible lung damage that could be stopped if the current impasse between those around the negotiating table was broken. Those who will suffer the most are stuck in the middle.

It is up to the Government to facilitate the end of the deadlock so that people can access Orkambi and see their lives transformed. One way to do that is to begin the job of implementing the recommendations set out in the accelerated access review, which the Opposition welcome. The goal of speeding up access to drugs by cutting four years off the time needed to bring new medicines to patients is something that we should all welcome; we need to see whether it can be achieved. The review has the potential to change the philosophy of the NHS in line with the five-year forward view, but also to help to maintain our global lead in life sciences. The recommendations set out in its final report have the ​potential to transform how we provide drugs and treatments, ensuring that we see innovation in drugs, diagnostic tools and healthcare developments. However, there still remain issues around thresholds for new drugs, which NICE and NHS England are currently consulting on. I understand that some associations and charities have raised concerns about that, and I hope that the Minister will update us on some of those discussions.

Mark Durkan (Foyle) (SDLP)

My hon. Friend is right to be so positive about many aspects of the accelerated access review. However, as she has mentioned, there are concerns that new definitional ruts could be created by some of the terms of the review, which could lead to some patients and some promising drugs being trapped in exactly the sort of deadlock that she has described.

Mrs Hodgson

My hon. Friend is right to raise those concerns. We do not want to move into a new system that will create new unintended consequences. Perhaps the Minister will touch on that in his speech.

Although some are calling for interim solutions to help people who are stuck waiting for the accelerated access review’s recommendations to be implemented, it is also important that the Government get on with implementing those changes. The review was announced more than a year ago and was published two months ago now. It is important to remember that the transformation that we all want to see will not happen straight away, but it is still right that we keep up the pressure for the recommendations to be implemented. There are many such recommendations, and I hope that the Minister will be able to update us today on the progress on each of them. There are two in particular that illustrate what can be done to resolve the deadlock around Orkambi—the immediate establishment of an accelerated access partnership and the setting up of a new flexible strategic commercial unit.

The accelerated access partnership is one way in which, through co-ordination and collaboration across the system, we could see drugs brought on to the market more quickly to benefit patients who need access to them. I would be interested to hear from the Minister what progress has been made on its creation, especially in conjunction with the issues surrounding the deadlock on Orkambi.

It is clear that the strategic commercial unit could help to benefit those who wish to see Orkambi offered on the NHS. The unit could work with those involved in this dispute to end the current deadlock through facilitation of the flexibility and transformational change promised by the accelerated access review. That would go some way towards helping to access data on drugs such as Orkambi and getting them out to patients. There is a willingness out there for that flexibility to be brought into the system; for example, the Cystic Fibrosis Trust has offered to use the UK cystic fibrosis registry to help to provide essential data that can help to prove how effective drugs can be and what more needs to be done. We have already heard how substantial that registry is; it includes 99% of sufferers. I understand that the trust’s offer has been welcomed by all sides in the negotiations but is blocked due to the lack of progress in implementing the changes set out in the review. I hope that the Minister will give us some clarity on when the unit will ​be created and when we can see a culture shift within the system that will allow for flexibility to accept data and information that show how much effect these drugs have on people’s lives.

Dr Philippa Whitford

Does the hon. Lady share my concern about drugs for other conditions, such as sofosbuvir for hepatitis C? Even after they get NICE approval, those more expensive drugs are now being rationed at the NHS England stage. At the moment we are fighting to get through NICE, but it needs to be a smooth path all the way through.

Mrs Hodgson

The cost of drugs sometimes leads the NHS into the terrible and unfortunate situation in which rationing seems to become the norm. There can also be a postcode lottery, which is another element that we need to look at. The price of drugs really is the crux of the issue.

In conclusion, I hope that the Minister will offer some insight into the progress being made on the recommendations of the accelerated access review. The case of Orkambi can help to drive through these changes and to end this deadlock, which, as we have heard, is causing unnecessary suffering for those living with cystic fibrosis. The review has established a space for change and for patients to access new and innovative drugs and treatments. It is important that there is no stalling or delay in transforming the system, because people’s lives depend on the changes called for by the review. I am sure that the Minister will keep that in mind when he goes back to his officials.

 4.32 pm

Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)

The order does not change anything that is already on the statute book; it just updates enforcement provisions, following the passing of the Consumer Rights Act 2015. We therefore welcome it and will not divide on it.

Enforcing the regulations and legislation relating to the sale, packaging and marketing of tobacco is incredibly important, especially as we are continuing down the road to becoming a smoke-free society. Currently, one in five adults smokes, and although the number has halved since 1974 we still have a long way to go before we can cheer and pat ourselves on the back for achieving that vision of a healthier society.

Over the years, important work has been done to reduce the prevalence of smoking in our society, including the ban on smoking in public places introduced by the previous Labour Government and some important measures introduced under the coalition Government, such as the standardised packaging of tobacco products, which the hon. Member for Battersea (Jane Ellison) spearheaded so valiantly. I know it is peculiar for a shadow Minister to be bipartisan, but the hon. Lady deserves credit for her work on this matter, especially on the previous tobacco control plan.

That brings me nicely to my last point. I cannot miss the opportunity to remind the Minister that we remain concerned that our work to reduce tobacco consumption in our society could stall if the new tobacco control plan is not introduced sooner, rather than later. I want to use this opportunity to ensure that it is at the forefront of the Minister’s mind—I am sure it is—and that she does not forget it over the Christmas break.

4.33 pm

Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)

Like all other hon. Members who have spoken, I welcome this very important debate, which was secured by the hon. Member for Basildon and Billericay (Mr Baron) and others. Although he is, uncharacteristically, not in his place, for very important reasons—we all send him and his wife our very best wishes—I want to place on the record that this House and, indeed, the whole country owe him a huge debt of gratitude for all that he does on the issue and for his sterling leadership as chair of the all-party parliamentary group on cancer in aiding our work in fighting this terrible disease.

I thank my hon. Friend the Member for Scunthorpe (Nic Dakin), who opened the debate. Like me and several others, he is a chair of an all-party group on cancer; his group is on pancreatic cancer. He works tirelessly on this issue, and he chaired the “Britain against cancer” conference with aplomb this week. He set the scene today so well, and his knowledge and passion shone through.

I thank all hon. Members who have spoken in the debate: the hon. Member for Crawley (Henry Smith), my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick), the hon. Members for Bosworth (David Tredinnick), for Strangford (Jim Shannon) and for Castle Point (Rebecca Harris)—the hon. Lady is also the chair of a cancer all-party group—the hon. Member for Harrow East (Bob Blackman) and my very good friend the hon. Member for Bury St Edmunds (Jo Churchill), who is also vice-chair of the all-party group on breast cancer, of which I am a co-chair. They all made excellent contributions, and each and every one has made some important points about where we need to go next with the cancer strategy.

Much of the debate has focused on the report published by the all-party group on cancer, which looked at the progress made in implementing the cancer strategy one year on from its publication. The report makes many valid points and recommendations, and I look forward to hearing from the Minister on the specifics mentioned in it. The strategy can go a long way towards helping some of the estimated 2.5 million people living with cancer and the people who are diagnosed each year with cancer. The strategy, if implemented in full, could save 30,000 more lives per year by 2020.

That should be paired with the deeply worrying news that broke at the beginning of November that more than 130,000 patients a year have not been receiving cancer treatment on time, because cancer patients did not see a cancer specialist within the required 14 days. In some areas, the problem was so severe that more than ​6,000 patients were forced to wait 104 days or more. In addition, our findings show that the Government met their 62-day target only once in the last 20 months. That should drive the Government to do more, and it is clear that we are seeing issues around the transformations already. That should not be knocked, and I am certainly not knocking it, but we must all continue to hold the Government to account where we can.

That is why in my contribution I want to touch on two areas: improvement in preventive measures that can help to reduce the occurrence of cancer, and the significant concerns that have recently been raised regarding the cancer workforce. We can all agree that prevention is key to addressing many health conditions, illnesses and diseases, and cancer is no different. As we have heard from several hon. Members in this debate, four in 10 cancers are preventable, and we should be doing much more to prevent cancers from developing, especially those that could have been prevented by lifestyle changes. Prevention was a central pillar of the cancer strategy, along with the five-year forward view.

The Minister is surely prepared for what I am going to say next, because I have said it to him often enough in my short time as the shadow Minister with responsibility for public health. It remains true, sadly. The false economy of cutting public health funding with no assessment of the ramifications of doing so on various aspects of our lives, or on other parts of the NHS and the wider health service, is seriously worrying. According to data collected by the Association of Directors of Public Health, smoking cessation services are expected to be reduced by 61% in 2016-17, with 5% of services completely decommissioned. For weight management support there will be a 52% reduction, with 12% being decommissioned. That is damning information when smoking and obesity are, as we have heard, two of the biggest preventable causes of cancer. We know that 100,000 people are dying each year from smoking-related diseases, including cancer.

It is right that the cancer strategy strongly recommended the introduction of a new tobacco control plan post haste and an ambitious plan for a smoke-free society by 2035, as has been outlined. We still have not seen the plan, despite being promised repeatedly over the last year that we would. I am sure that the Minister will give us further information on that in his response, and we all look forward to it. I hope that we see that plan sooner rather than later, and that hope has been echoed by several hon. Members from both sides of the House.

A continued delay will never be beneficial for our shared vision of a smoke-free society or for preventing cancer from happening. Another plan we have finally seen, although it has been considerably watered down, is the one for childhood obesity. After smoking, it is understood that obesity is the next biggest preventable cause of cancer. If we allow current trends to continue, there could be more than 670,000 additional cases of cancer by 2035. This completely goes against the vision set out in the cancer strategy. We saw some of the detail of the sugary drinks levy earlier this week, and it will be interesting to see how this develops in the months ahead, but I hope the Minister can outline a little bit more about what else he and his colleagues plan to do on obesity and its links to cancer.

As part of the cancer strategy, a review of the current workforce was called for so that we could fully understand the shortfalls—the areas of investment needed and the ​gaps in the training of new and existing NHS staff—and meet the ambitious and noble goals set out in the strategy. In my capacity as chair of the all-party group on ovarian cancer and co-chair of the all-party group on breast cancer, I along with colleagues from both sides of the House—some of them are in the Chamber, notably the hon. Member for Bury St Edmunds, who is a vice-chair of the all-party group on breast cancer—raised this at the beginning of the year with Health Education England, which is conducting the review. In our letter, we raised the need for immediate solutions to fill the specialist gaps in our cancer workforce, but also the need for a strategic, longer-term solution to be put in place.

The issue of the cancer workforce is an incredibly important one, especially given that Cancer Research UK warned over two weeks ago that pathology services in the UK were at a tipping point, and that the Royal College of Radiologists warned earlier in the year that 25% of NHS breast screening programmes were understaffed, with 13% of consultant breast radiologist posts left vacant, a figure that has doubled since 2010. That should spur on the Department to push ahead on the workforce issues that have been raised so often with Ministers.

Only this July, organisations such as Macmillan and Cancer Research UK joined with other organisations to call for a set of principles to be taken up by the Government, including a review of the current and future workforce. The Minister should also heed the words of Dr Harpal Kumar, who during an oral evidence session for the inquiry by the all-party group on cancer into progress on the implementation of the review, said that workforce issues remained “significant and severe”.

The ageing population, which means that more and more people could be diagnosed with cancer, and the much welcomed push to improve earlier diagnosis of cancer mean that pressures on the workforce will rise if the right support is not found, especially given the projection that 500,000 Britons will be diagnosed with cancer by 2035. That should remain at the forefront of the Minister’s mind, and in the minds of his officials and those who deal with workforce capacity.

It is clear that investment is failing to keep up with demand. That was raised in the cancer strategy, which called on NHS England to invest to unlock the extra capacity we need to meet the higher levels of cancer testing. The Opposition support the calls made only a few short months ago by the national cancer advisory group for NHS England’s cancer transformation board to prioritise a focus on the cancer workforce in the coming months. I hope the Minister will ensure that that happens, and that when we come back from the Christmas recess, we will start to see the much needed progress that has been called for.

In conclusion, the work that has started on the transformative programme is to be welcomed. It is a large task to undertake, yet the Government will not be allowed to sit back; I know that they and the Minister will not do so. It is up to all of us in this House, along with many people outside this place, to continue to do all we can to hold the Minister and the Government to account on what are such important and personal matters for all of us who have been affected by cancer, be it ​personally or through family and friends. We must all be critical friends in this drive to fight off cancer once and for all. We all agree that cancer should be at the top of our list of health priorities. It is so destructive, and, very sadly, it will affect us all in some way. We must ensure that we get this right, because we cannot afford to get it wrong.

Mrs Hodgson