Off-patent Drugs Bill

Jo Churchill Excerpts

Friday 6th November 2015 Commons Chamber

[Jo Churchill (Bury St Edmunds) (Con)]

I congratulate the hon. Member for Torfaen (Nick Thomas-Symonds) on his success and on introducing this important Bill to the House today. I stand here as someone who has had cancer twice. I served on the advisory group of a national breast cancer charity and I am a breast cancer ambassador. In this House, I serve as vice-chair of both the all-party group on cancer and the all-party group on breast cancer. But I also stand here for all those survivors and for all those sufferers of MS, cancer and the many other conditions for which we know this Bill could provide effective treatment. It raises an issue that touches the lives of hundreds of thousands of people across the UK, including many of my constituents, who are living with or beyond serious diseases that have a profound effect on not only their lives, but those of their families.

For me, the Bill is about three core things: the patients, through improving access and outcomes; saving lives; and raising awareness. Although this House will debate the technicalities of the Bill as it progresses, today we are debating the principles. Why are we here? I can say from personal experience that patients and their families want to know simply that where there are treatments that could help them, they will be able to access them, regardless of where in the country they are and by which doctor or other medical professional they are being treated. For patients, the Bill serves as a lifeline. It could mean the difference between living beyond cancer or dying from it, or, for other diseases, between having an extended life or having quality of life. For those living with conditions that have fewer treatment options, it offers one simple thing: hope. It could ensure that we continue to make progress, and that our brilliant scientists make fresh breakthroughs—as they inevitably will—and when they do, people will benefit.

The Bill could have a significant impact on breast cancer, as, according to the hon. Member for Central Ayrshire (Dr Whitford), it would ensure the wider availability of preventive drugs. For women who have a family history of breast cancer and therefore a higher risk of developing the disease, Tamoxifen and Raloxifene have been shown to reduce the risk of the disease occurring in the first place by a third, which is not an insignificant amount.

Ministers have argued that this Bill is not needed. Indeed, we have just heard a Minister quite rightly questioning a Member, who is an expert on this matter, about the nuances of it. The argument is that the Bill merely regulates something that is possible for the medical profession to do already—none of us likes unnecessary regulation—but prescribing statistics show that that is simply not happening for all the reasons that have just been discussed. Such regulation could make a big impact, but the drugs have to be prescribed through every grade. That treatment is not being offered to many women, for if it were I would not be standing in this House today arguing for faster progress in this matter; I would be in my constituency.

Sometimes, Tamoxifen has side effects. Some women may not wish to use it as a preventive treatment, but the point is that they should have the choice, which they do not always have now. A woman with a high risk of breast cancer does not have many options. Sometimes, their only choice is a double mastectomy. I think of all the women around me—those in my constituency and my own daughters—and ask: is that really the only choice? This Bill would empower clinicians to offer and prescribe drugs such as Tamoxifen for as little as 6p a day. Those drugs could deliver effective treatment options and, crucially, those women at an increased risk of breast cancer could have the ability to choose the right course of treatment for them.

However, this debate goes wider than just drugs for breast cancer. A friend who was at a reception in this place last week has had a double mastectomy. She also has MS. The drug Simvastatin, which was referred to earlier and was originally licensed for cholesterol, has been shown to slow down brain atrophy by almost 40%. It also would help those who suffer from Parkinson’s. My friend also has type 2 diabetes, and there is some evidence to show that drugs for the treatment of that disease will also be potentially beneficial for those suffering from Alzheimer’s. By the way, she told me last week that she was volunteering as well as holding down her normal job—amazing.

As the research, which is also amazing, shows us, bisphosphonates that were developed to treat osteoporosis are now commonly used in the treatment of secondary breast cancer, and some 36,000 women live with secondary breast cancer in this country. zoledronic acid, a type of bisphosphonate, has been shown to reduce the risk of breast cancer spreading to the bone by 28%. Arguably, it is one of the biggest breakthroughs in terms of reducing mortality that we have seen in breast cancer research in the past 10 years. If this drug were routinely prescribed, it could save up to 1,000 lives per annum. However, it saves not only lives, but emotional trauma, physical impact, the cost on all those involved and the cost to the NHS.

I welcome the work that the Government are doing into the accelerated access review, but in the interim report that was published only last week, I saw no mention of off-patent or repurposed drugs, although I am more than happy to be corrected on that.

My personal view in this area and across the whole drugs arena, including the cancer drugs fund—where we have seen yet another removal of avostatin this week, although, thankfully, Kadcyla has remained—is that we need speedy decision making. That will help everybody in the industry, which needs to make a profit because it is seriously expensive to bring drugs from the bench to the patient, but will benefit patients and clinicians as well.

The Government support the intentions of the Bill. I feel confident that all clinicians have the ability to deliver what is best for their patients. Indeed, the cancer strategy, set out by NHS England and supported by the Government, aims to deliver a patient-centred approach. It puts saving the lives of cancer patients and improving their quality of treatment at the heart of the “Five Year Forward View”. By unlocking access to off-patent and life-saving drugs, the Bill would do that, too.

I believe that the Bill can deliver, in saving lives, in empowering clinicians, in ensuring patient choice and in saving money for the NHS—so what’s not to like? I hope therefore that my right hon. Friend the Minister will consider carefully the issues raised in the Bill.

NHS (Charitable Trusts Etc.) Bill

Jo Churchill Excerpts

Friday 6th November 2015 Commons Chamber

[Jo Churchill (Bury St Edmunds) (Con)]

I thank my hon. Friend the Member for Aldridge-Brownhills (Wendy Morton) for bringing forward this Bill. I have listened attentively to Members’ wonderful stories about the charitable trusts in their constituencies and the great work that goes on up and down the country. I support the Bill, however, because it seems to encompass all that my party stands for. It gives power to individual initiative and, as my hon. Friend the Member for Eddisbury (Antoinette Sandbach) said, it provides independence. As we have heard, it allows NHS charities more control over their own destinies. That seems to fit perfectly with the ethos of freedom from outside influence, to which many of my hon. Friends have alluded.

This applies particularly to the world-renowned Great Ormond Street hospital, occupying as it does a special place in my heart, because it is where my baby brother died. It is also a place that has treated constituents of mine, and I know that they have been immensely grateful for the help and assistance that has been afforded to them. I can only think that the magnificent work done by staff at Great Ormond Street will be improved further by this Bill, fulfilling as it does J. M. Barrie’s intent that the royalties from “Peter Pan” remain with Great Ormond Street Hospital Children’s Charity in secure perpetuity. We have heard how fitting it is that we debate this today, when we have read that genetic editing has been pioneered at that hospital. We are still in the presence of a charity and a hospital that, because of the assistance it receives, drives science forward, for which we should all be grateful.

On occasion, as we have heard, charities are open to the depredations of the less charitably driven, and there is reputational risk from this. Over the years, there have been many instances where charity commissioners have been outsmarted by smooth operators in dividing charities from their funds. We must remain aware of that. This Bill, which provides tight controls over what will be independent NHS charities, particularly Great Ormond Street Hospital Children’s Charity, should ensure, as much as possible, that these funds are secure. I therefore add my voice to those of all Members across the House who support the Bill.

Secondary Breast Cancer

Jo Churchill Excerpts

Wednesday 21st October 2015 Westminster Hall

[Jo Churchill (Bury St Edmunds) (Con)]

I thank my right hon. Friend—sorry, my hon. Friend the Member for North Warwickshire (Craig Tracey); I just gave him a promotion—for securing the debate.

I come to this with a slightly different hat on. As I prepared to speak, I tried to decide whether the word “cancer” or “secondary” was the scariest. For me, it is “secondary”. I have had cancer a couple of times, and the scan anxiety that the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) talked of is so real, as is the need for joined-up services and clinical nurse specialists. We need to be able to be a person in the pipeline. Owing to the shortness of time, I will not say a lot of what I was going to say, but I will try to concentrate on what it feels like for the person.

We know the statistics. We know that 50,000 women and men—we must remember that there are men with breast cancer too—get breast cancer per year. The good news for primary breast cancer sufferers is that many of those people are survivors. Victoria Derbyshire is a fine example to us only this morning, in the papers; good luck to her with her battle.

Some of my friends and constituents to whom I have spoken have had secondary or metastatic breast cancer. It sounds hopeless, but it is not. With improved drugs and more targeted and tailored treatment, survival time is longer. Yes, there are 36,000 people living with breast cancer, but it is better quality survival that most of us want. It is about the quality of survival.

I started my journey to becoming an MP by talking in 2010 in one of the rooms in this place about primary cancers and how we had some of the poorest outcomes in Europe. Things are not so much better in 2015. We need to keep our feet to the fire and ensure we push hard on this disease, so that we start to get real progress for primary, and particularly secondary, cancers.

My hon. Friend the Member for Chippenham (Michelle Donelan) mentioned old age but those from various ethnic minorities also have extremely poor outcomes. We must pay heed to that. How can we get better outcomes? The cancer strategy for England calls for improvements from pre-diagnosis to post-treatment. That is vital but we should ensure that patients receive optimum support and interventions so that they can get on with their lives. We need to think about lifestyles and lifetimes, and about which cancer services we need, to enable people to carry on working for as long as they want, so that they feel like people, not like cancer patients. That is the important thing for people living with this disease. We want people to lead healthy, fulfilled and productive lives, whichever stage of the disease they are at. The strategy proposes the development of a national metric of quality of life, underpinned by a robust approach to measurement, which will incentivise the provision of better aftercare interventions.

We want multidisciplinary teams. They really improve outcomes for patients and, when people are diagnosed, they want people other than oncologists. They want to talk to a psychologist as the disease sometimes messes with their heads more than it does with their bodies. That important pipeline is, oh, so needed. There should be robust surveillance systems, as my hon. Friend the Member for North Warwickshire said. It is important that we know what we know, so that we know how to get to the root cause of the problem.

Since 2011, six breast cancer drugs have been available. There was a debate in this place yesterday about the cancer drugs fund. We need sustainable funding to ensure that women and men get the treatment that they need. Treatment should not be a lottery. In my view, this pot is a sticking plaster that has gone a bit curly around the edges. It needs revising and refreshing. There needs to be an efficient way of moving drugs from the cancer drugs fund into positive and routine commissioning. Currently, it is out of date and not fit for purpose.

I welcome the accelerated access review, which reports at the end of the year, and the cancer drugs fund, but I urge the Government to make some speedy decisions because, as 4 November looms, people are sitting on the edge of decision making, not knowing whether they are likely to get treatment or not. Although we have said that women and men who are on their treatment programme will still receive that treatment, it is not so certain for those who are not yet on those drugs.

We could learn a little from the Scottish Medicines Consortium because, on this, it does some things a little better than we are managing to do. It commissions and moves more swiftly. We could also unblock our pipelines. We are potentially disabling innovative medicines. We need to trial innovative drugs that can be used to prolong life and have a conversation with pharmaceutical companies if England does not want to fall behind in the race to make the medicines of the 21st century.

Research is so important, as is this debate on secondary breast cancer because science will unlock the ability to fight the disease. Geneticists on the 1000 Genomes Project have already discovered more than 100 regions of the genome that contain genetic variants. Work goes on in labs, such as the Genesis Genetics research, targeting who is susceptible and why. If we know people are more susceptible, the better they can be treated. Evidence-based is good but it charges industry and researchers with helping to drive things forward.

As a survivor and someone who has held too many women for whom secondary breast cancer has not offered longevity, I dream of a day when immunotherapy, CyberKnife and the work of drugs companies means that this insidious disease is a has-been. We need a lifetime approach, preventive medicine and preventive care. We need to watch our weight, keep healthy and be active, and the drugs that we need when we need them—in hospital or in the community.

NHS (Contracts and Conditions)

Jo Churchill Excerpts

Monday 14th September 2015 Westminster Hall

[Jo Churchill (Bury St Edmunds) (Con)]

We have a wonderful resource in the national health service, but it cannot be preserved in aspic. I am lucky enough to have been treated by these wonderful consultants, which is why I am here. Society and medical technologies are changing at an alarming pace. The importance of the central asset of NHS staff cannot be overestimated, and the interest from my colleagues today shows how much Government Members value them. I am the daughter of a nurse, and I am the mother of a health professional. I get berated long and hard on how tough things were, as my hon. Friend the Member for Lewes (Maria Caulfield) alluded to, and how tough things are. That is a constant state, but let us be realistic: there will be a deficit this year of enormous proportions. Rather than throw in yet another figure, we know the deficit is large, and we know it is a problem.

Do I believe the premise of this petition? No. Important decisions have to be made if we are to focus on the primary need of patient outcomes. The question is how we treat people efficiently, effectively and with compassion. Hospital managers and consultants may say that the changes will deliver a 21st-century model of care that will safeguard both the patient interest and the cost-effectiveness of services, but that is quite wordy and is making everything the same problem. We do not all have the same problem. I completely concur with my hon. Friend the Member for Totnes (Dr Wollaston) on rural GPs. There are rural GPs in my constituency who are already feeling stretched, and asking them to deliver two more days of cover—seven days in total—with no more staff is not the answer. We must link training and recruitment, and we must work on a delivery mechanism that means not only the 5,000 extra GPs that we have promised but less box-ticking to free up their time, which would not go amiss. It has been said that we do not have enough GPs, but it takes five years to train a GP. Anyone who starts university now will not be qualified by the end of this Parliament. We are dealing with the legacy of the tail end of the Labour Government, which is one reason why we do not have enough doctors.

I am from a business background, and I ask simply how we can do more with less. Do I believe that the way to achieve better care in our hospital settings is not to have access to seven-day patient services? No, I do not. Do I think that if a child is knocked off their bike on a Saturday or a dad has a heart attack on a Sunday, doctors and nurses should struggle to deliver optimal service without the important back-up of diagnostic services? No, I do not. Why is it that, although an acute bed costs about £900 a night, patients in our hospitals cannot be admitted or discharged as easily on Saturdays and Sundays as on Mondays and Thursdays? One problem is that we cannot discharge. It is not all about who is coming in the front door; it is also about who is going out the back door. It is a real strain.

[Victoria Prentis (Banbury) (Con)]

My local trust, Oxford University Hospitals trust, has recently started a “perfect week” scheme, in which it makes all resources available to all those who work in the hospital system. It has discovered that one main barrier to discharge on Saturdays and Sundays is that pharmaceutical staff are not available at all hours of the day and night. Would it be possible to roll out that concept of a perfect week elsewhere?

[Jo Churchill]

It is a very good idea. The lack of pharmacy provision in hospitals is often cited as one obstacle to patient discharge. The cost of not discharging someone on a Friday, meaning that they use a bed on Friday, Saturday and Sunday, is £2,700, which is a lot of money.

[Helen Jones]

The hon. Lady was not in the House when we debated this Government’s change to local government finance, but at the time, many of us warned that it would hit social care and impact on our hospitals. Does she accept that hospitals are having great difficulty discharging patients, not only at weekends but during the week, because social care is not available for them?

[Jo Churchill]

I would say that it is a mixed picture. What I am picking up from care homes in my constituency is that some wards do it more effectively than others, with better services and things better locked together. Although I accept that there may be a problem, again, I look to the leadership.

I gave birth to some of my children on a Saturday and Sunday. Their entrance did not appear any less special to the obstetrician than those of my children who appeared midweek. I am not consultant-bashing; this is reality. The NHS has been delivering consultants and staff who provide outstanding service, but one cannot deny the statistic that patients’ chance of survival is less if they are admitted to a hospital at the weekend. Even if we extrapolate from those figures to account for the fact that the people admitted at the weekend are often very poorly, and often very elderly, they tell us that there is a problem. It would be remiss of this or any Government not to ask why or to investigate the situation and consider how to provide solutions.

I will not talk about people’s pay or anything else; we have done that. Instead, I shall focus on the petition, which in my view is neither constructive nor helpful. I would like the Government to learn from the best practice of consultants and their teams. Brilliant ideas are out there if we can only harness that best practice. For example, at the virtual fracture clinic at my West Suffolk hospital, a consultant told me that he has cut the number of times that patients must visit the hospital. Work can be done remotely; even discharges can be done on the phone, and those who need further specialist help can be sent on. We need to have honest conversations about the NHS. We need to use its finite resources, including staff, more sensibly if we are to survive.

We have 1.4 million great people working in our NHS, and 1.6 million people working in our social care sector. That is one tenth of this country’s population. We all agree that a seamless pathway between the two is the best future, but I leave Members with this question. If we cannot discuss a way forward that allows us to accept change, understand and develop new ways of working, we may struggle to look after the burgeoning health population, and there may be more than contracts to think about.

Drugs: Ultra-rare Diseases

Jo Churchill Excerpts

Tuesday 16th June 2015 Westminster Hall

[Greg Mulholland]

It is absolutely disgraceful and I urge the Minister to properly take that up. We have not had answers or justifications, although there can be no justification for NHS England behaving in that way. NICE’s decision not to recommend approving Vimizim in the short term has already been deemed to be flawed by those involved, including the MPS Society and clinicians, because it fails to consider BioMarin’s offer and has assumed that the cost of the drug will be the original £395,000. How has that happened? NICE also took months to put together the interim guidance, but has given only until next Tuesday to receive the extra evidence that it has asked for. Surely that is an unfair timeline for response.

As of 28 April 2015—which, incidentally, is a year after Vimizim was approved by the European Medicines Agency, meaning that it is approved in 20 European countries, including France, Germany and the Czech Republic—the drug was still not available in the UK, because NHS England has failed to put in place arrangements for funding it. Does the Minister not share the sense of frustration, anger and disbelief that the NHS refuses to fund the drug when so many of our neighbours do? More fundamentally, Earl Howe gave patients an assurance that their access to the drugs that they need would not depend on the cost per quality-adjusted life year measure. Can the Minister tell us why his Department has gone back on that assurance? That is exactly what it appears to have done.

I appreciate that the Minister has taken the time to meet us, but I remind him of the 11-page letter that he asked the organisations to send him some 11 weeks ago. We expected him to respond to that, as it was a complaint about NHS England’s handling of the matter, yet he simply passed it on for NHS England to respond to. That is not what we asked him to do, and the response does not address the points that we made to him, at his request, about how NHS England has failed people. I ask him again to reply directly and properly, and to investigate the mishandling of the situation by NHS England.

Duchenne muscular dystrophy has been mentioned. Again, I highlight the campaigning of organisations such as Muscular Dystrophy UK, Joining Jack, Action Duchenne, the Duchenne Family Support Group, the Duchenne Children’s Trust, Alex’s Wish and the Harrisons Fund. Those groups share the MPS Society’s frustration at the process. As many hon. Members know, Duchenne muscular dystrophy is a condition affecting only boys, and numerous potential treatments are in late clinical trial. Translarna, in particular, received conditional approval funding in the EU in August 2014. This clearly effective drug is being funded in a number of countries, including Greece, even given its economic situation, yet we are still no closer to hearing whether it will be funded here. I hope to hear positive news on that drug today.

I pay tribute to the Tuberous Sclerosis Association and the work of Jayne Spink and her colleagues. For those who do not know, tuberous sclerosis is a condition that causes the growth of tumours in organs, including the brain, eyes, heart, kidneys, skin and lungs, and a range of associated health problems, including epilepsy, learning difficulties and behavioural problems. The drug everolimus has been found to be effective in shrinking the tumours, extending life and improving quality of life, but although it was licensed for use in patients with tuberous sclerosis in February 2013, NHS England has failed to draw up a prescribing policy. At least two people have already died since the drug was licensed; Chris Kingswood, a consultant nephrologist, said that Julie Brooker’s death in January 2013 was “absolutely preventable” if she had been given access to everolimus.

[Jo Churchill (Bury St Edmunds) (Con)]

My constituent William needs that drug. The issue for his family is the timeline, which the hon. Gentleman mentioned. They have waited two years and been told that it may be another year, but they have said to me that William might not have that much time and that, like the woman the hon. Gentleman just mentioned, he might no longer be with them by then. Those parents are fighting for their son.

[Greg Mulholland]

The hon. Lady is right: none of these children or families has time. All those conditions deteriorate irreversibly. She is right that it has been 28 months since the drug was approved, yet patients are no closer to accessing it. What will the Minister do to speed up a commissioning policy for everolimus?

I turn to Batten disease, another condition already mentioned. I pay tribute to the Batten Disease Family Association. Batten disease is another condition that I had not heard of until I was approached by my constituents Duncan and Lynsey Brownnutt. I have been pleased to join Duncan to support some of his amazing fundraising efforts. This summer, he is off on a wonderful cycling trip to the Arctic Circle with his friend Rod to raise money, but the day after the general election, his six-year-old daughter Ellie Mae passed away from Batten disease.

Batten disease is another condition currently without any cure. It includes increasing visual impairment, complex epilepsy with severe seizures, decline of speech, language and swallowing skills, deterioration of motor skills resulting in loss of mobility and ultimately death. Potential treatment for Batten disease is not even being considered for 25 June. If the situation of the other conditions is still unclear and their drugs have been turned down, when will action be taken on treatment for Batten disease?