Cancer Drugs
Good morning. The first item of business is a debate on motion S4M-00956, in the name of Murdo Fraser, on cancer drugs and their availability in Scotland. I call on Murdo Fraser to move the motion and speak; he has 10 minutes.
We have all seen newspaper headlines such as “Scots ‘worst’ for cancer survival”, “Lung cancer survival among the lowest in Europe” and Scotland “has the lowest breast cancer survival rate”. The sad truth is that report after report tells us that Scotland lags behind a plethora of developed countries in survival rates for cancer. Norway, Sweden, the US, Canada and France are but a few examples of countries that boast better five-year survival rates than Scotland across a range of cancers.
I accept that, in recent years, there has been an improvement in the figures for survival rates in Scotland, but I wish to highlight that Scots also lag behind a significant proportion of Europe for access to new cancer medicines, even though successive price cuts and exchange rate movements have meant that United Kingdom prices are currently among the lowest in Europe.
It is our job as parliamentarians and as compassionate members of our society to ensure that, when a person is diagnosed with a terrible illness such as cancer, they have the best possible fighting chance of beating it, or—in the most extreme cases—of being able at least to extend for as long as possible the time that they can spend with loved ones.
Sadly, in June this year, one of my constituents, Gillian Bauld from Dunblane, died after being diagnosed with advanced metastatic breast cancer. Her husband had contacted me prior to her death to raise concerns about the difficulty his wife was having accessing lapatinib—a drug that is not approved by the Scottish Medicines Consortium, but which would have presented the best way of controlling the disease’s progression after her chemotherapy came to an end.
The Baulds made two separate exceptional prescribing requests, by two different consultants, and were rejected both times. As the drug was not approved by the SMC and because the exceptional prescribing route had been closed down to them, Gillian’s consultant advised that the only option would be to pay for the treatment themselves, at a cost of £10,000 for a 12-week course. That was unaffordable for that family, as it would be for many families across Scotland. It was a crushing blow at what was already a difficult and distressing time for the family.
The really devastating fact for Gillian was that, had she been living in England, she would have met the specific criteria that are laid down for access to lapatinib through the interim cancer drugs fund. As her husband wrote in The Scotsman:
“The ICDF is intended to help people like my wife. If we lived in England, then she would fully meet the criteria for funding, whereas in Scotland she isn’t considered worthy of further help.”
There are many cases all across Scotland like my constituent Gillian Bauld and I am sure members have dealt with, or are dealing with, similar cases.
According to a report that has been published by the Rarer Cancers Foundation, there are now 23 cancer treatments that are not routinely available in Scotland but which can be funded through the interim cancer drugs fund that has been set up by the Conservative-led coalition in England. The cabinet secretary will dispute the figure of 23 cancer treatment drugs. I have read the correspondence that she sent to my colleague David McLetchie yesterday, and I have seen the vigorous rebuttal from the Rarer Cancers Foundation that was sent to the health services research unit on 8 September.
I am not here to get into a dispute about whether the figure is 23 or some lower figure. I acknowledge that the cabinet secretary believes it is not 23 and may be as low as 12. It seems that that is not really the point; even the cabinet secretary will accept that cancer medicines that are available in England are not available in Scotland. If we cannot agree on the number, the principle is established.
The interim cancer drugs fund totals £600 million over three years, which is in addition to an initial £50 million. It has helped 5,000 patients in England to access the cancer medicines that they need. Such facts convince me that the Rarer Cancers Foundation is right to argue that about 14 treatment requests per million population are being approved in Scotland, in comparison with almost 48 such requests in England. Lapatinib—the drug that my constituent required for her breast cancer—has an approval rating in England that is nine times greater than that in Scotland.
If Scotland set up its own fund and achieved the same approval rate as England has for a host of drugs, the number of cancer patients in Scotland who could gain access to life-enhancing and life-extending treatment would increase by 235 per cent. We need to remember that we are dealing with many people who are reaching the end of their lives. Often, such drugs will not save their lives, but will prolong them and give them better quality of life when they need extra help.
I acknowledge that the fund south of the border is an interim measure, as such a fund in Scotland would be. The fund in England will run until 2014, when the Department of Health intends to replace the current pharmaceutical price regulatory system with a value-based pricing system for drugs which, I hope, the cabinet secretary will support for Scotland. That change will link the price of a drug to cost-effectiveness on the basis of clinical evidence. It is hoped that the new system will lead to more innovation and investment being focused on patient needs. However, until that time, morally we cannot accept a system in which Scottish patients—simply because of where they are domiciled—are being denied access to cancer drugs that are available to other United Kingdom citizens.
When the cabinet secretary gets to her feet, I am sure that she will extol the virtues of the individual patient treatment request arrangements, which form the Scottish Government’s default position when it is challenged on the availability of cancer medicines. However, as my constituent Gillian Bauld found out, even with that system, access to cancer drugs is still being denied, while such vital drugs are available in England.
The report “Nations divided? An assessment of variations in access to cancer treatments for patients in England, Scotland and Wales”, from the Rarer Cancers Foundation, highlights the fact that patients do not access the group of medicines that the SMC has declined through the IPTR route, which is why patients in Scotland are three times less likely to gain access to a cancer drug that is not routinely available than are patients in England. One clinician told me that bevacizumab—I hope that I pronounced it correctly—is a very good example of such a medicine. The drug has no SMC approval and no successful IPTR appeals, despite being the gold standard of treatment of advanced colorectal cancer in the western world and now in England, with the introduction of the cancer drugs fund. Again, a drug is being made available to patients in England and Wales but not to patients in Scotland.
Cancer Research UK welcomed the English drugs fund and said:
“This cancer drugs fund could make a real difference for some cancer patients, allowing them to get the treatments they need.”
I know that other cancer charities take a different view, and it is clear that opinion is divided, but patients in England are undoubtedly benefiting from the fund. That is why cancer sufferers, many clinicians and many experts can see the evidence of the £600 million cancer drugs fund working for cancer patients.
The Rarer Cancers Foundation has estimated that achieving a comparable level of access in Scotland would cost the Scottish Government £5 million. That amount is insignificant in the context of the health budget. In our manifesto for the Scottish election earlier this year, we identified where that money could be found from. It would be money well spent.
I, and we, do not believe that cancer sufferers in Scotland should be treated less well than those elsewhere in the United Kingdom. It is time for the Scottish Government to think again on the issue. I have pleasure in moving the motion in my name.
I move,
That the Parliament notes with concern the findings of the Rarer Cancers Foundation (RCF) report, Nations divided? An assessment of variations in access to cancer treatments for patients in England, Scotland and Wales, which states that there are now 23 cancer medicines not routinely available in Scotland that may be available in England through the Cancer Drugs Fund; recognises that patients in Scotland are now three times less likely than patients in England to gain access to a cancer medicine that is not routinely available; further notes the comments of the RCF that the Scottish Government has displayed a concerning degree of complacency over access to cancer treatments, and calls on the Scottish Government to set up a Scottish cancer drugs fund to be reviewed once the current pharmaceutical price regulation scheme expires.
09:24
I welcome the debate. As all of us in the chamber will recognise, the issues are complex, emotive, sensitive and often very challenging. Because of that, however, there is an obligation on us all to debate the issues rationally, responsibly and accurately at all times.
First of all, comparisons between Scotland and England are not always valid; indeed, they are often extremely misleading. The simple fact is that lists of medicines do not tell the whole story of improvements in cancer care. One cannot simply say that, at any one time, a single fixed list of cancer medicines is being provided in England but not in Scotland.
I have studied the Rarer Cancers Foundation report; it is helpful in many respects. Furthermore, I respect the organisation’s work. Nevertheless, the report contains errors, and some of the claims that have been made and the basis on which the conclusions have been reached are open to serious challenge. For example, some of the medicines that have been listed as being not available in Scotland are, in fact, available. There has been double counting, and some of the “not recommended” decisions were made because the pharmaceutical company in question had not made a submission to the SMC. I will discuss those issues with the Rarer Cancers Foundation in due course.
There are, and will continue to be, differences between Scotland and England. There are drugs available in Scotland that are not available in England. The position changes rapidly because of the number of new medicines that become available. We should also remember that although the National Institute for Health and Clinical Excellence in England reviews only a selection of new drugs, the Scottish Medicines Consortium quickly reviews all new drugs that get a licence.
Of course, making such comparisons suggests that there is a uniform position across England. That is not the case. From what we can see from published policies on the interim cancer drugs fund, it appears that English regions are adopting different approaches to its application.
The key point is that the Scottish Government has been anything but complacent on the issue. We have worked collaboratively to put in place continuously improving and robust arrangements for assessment and introduction of new medicines. Indeed, that was demonstrated in the substantial amount of work that was carried out with the Public Petitions Committee. It is instructive that, in closing the petition in question, the committee highlighted improvements that have been made in the national health service in Scotland.
I say again—and will continue to say—what I have said previously: I am and always will be open-minded about what more can be done and I will always consider any ways in which we can further improve access to clinically evidenced and cost-effective medicines that improve patients’ outcomes. We are keeping the existing arrangements under review and will make changes where necessary.
We are also looking to the future. The position continues to evolve with, for example, the UK Government’s plans to introduce value-based pricing. I have written to the Secretary of State for Health and we are working with the Department of Health in England to ensure that our interests are fully recognised and that we can consider the wider implications for Scotland.
Our fundamental efforts remain focused on three principles: first, our having robust and independent national and local arrangements for timely assessment of new medicines to ensure that they are clinically evidenced and cost effective; secondly, our having consistent arrangements for consideration of individual cases where a particular medicine has not been recommended by the Scottish Medicines Consortium—I note that a vast majority of individual treatment requests are granted; and thirdly, there must be a clear focus on equity.
Although I absolutely understand the prominence that is given to cancer drugs and although I can, at first glance, see the attraction of a cancer drugs fund, my concern about equity leads me to agree with Breakthrough Breast Cancer, Macmillan Cancer Support and Myeloma UK. In a briefing for this debate—a briefing, I should point out, that recognises and welcomes the extent of the improvements that have been made and acknowledges the need for them to bed in—those respected cancer charities have said that, in their opinion, a cancer drugs fund is not a necessary policy for Scotland.
I have two key concerns about equity. First, I am concerned about the risk of a cancer drugs fund creating inequity between those who suffer from cancer and those who suffer from other serious conditions, such as Alzheimer’s and heart disease. We should continue to improve access to drugs; however, in my view, that should mean access to all drugs—not just to cancer drugs.
I entirely understand the cabinet secretary’s point about equity. However, at the heart of that very question is the fact that we are where we are in relation to decisions that have been made by the Department of Health in England and Wales. As a result of those decisions, patients in England and Wales are getting access to cancer drugs that are not available in Scotland. Surely in the interests of equity that question must be addressed.
I have already challenged that proposition and am happy to do so in greater detail in discussion with Murdo Fraser.
The second key equity issue is the risk of inequity within cancer care. Drugs are an important weapon in the battle against cancer, but they are not the only weapon. Radiotherapy and surgery are increasingly the treatments of choice. We need to invest in them too, and we need to do more to prevent cancer in the first place.
Murdo Fraser quoted Cancer Research UK, but he did not quote its opinion that the cancer drugs fund
“has been criticised for funding non-cost-effective chemotherapy treatments, rather than other, possibly more effective, interventions such as drives for earlier diagnosis or more advanced radiotherapy.”
That is a key, fundamental point. Our broader and more comprehensive approach has involved our investing £22 million in new radiotherapy equipment. For those reasons, we are committed to improving cancer survival rates through earlier detection of cancer. Our detect cancer early plan is backed up by investment of £30 million.
In short, we are committed to, and we will continue to be committed to, tackling cancer on all fronts, and we are seeing major improvements in the quality of care and outcomes for cancer patients. We will continue to prioritise further improvements through a consistent, evidence-based approach to the introduction of new medicines, treatments and support, alongside our crucial commitment to detecting cancer early. In looking to the future we will, of course, ensure that our interests are fully represented in the development of value-based pricing arrangements.
I look forward to the debate.
I move amendment S4M-00956.2, to leave out from “notes with concern” to end and insert:
“notes the Scottish Government’s significant and proactive developments in policy for the introduction and uptake of new medicines and the positive endorsement of these by the Public Petitions Committee; agrees that Scotland has robust arrangements for the introduction of newly licensed clinically and cost effective medicines, including cancer drugs, through the Scottish Medicines Consortium (SMC) and Healthcare Improvement Scotland, which operate independently from the Scottish Government; notes that, in certain circumstances, there are opportunities for local clinically led consideration of SMC “not recommended” medicines for individual patients; notes that Breakthrough Breast Cancer, Myeloma UK and Macmillan Cancer Support do not agree that the Cancer Drugs Fund is a necessary policy measure in Scotland; notes that the Scottish Government is working with the UK Department of Health with regard to the introduction of value-based pricing, and welcomes the intention to improve cancer survival rates through the detect cancer early implementation plan, backed up by the investment of £30 million.”
09:31
Back in 2009, in response to the Public Petitions Committee inquiry, the cabinet secretary outlined three steps that her Government would take to improve access to medicines on the NHS, and we welcomed that approach. She said at the end of that debate:
“My objective is to ensure that we have a system in place that is, from end to end, robust, fair and well understood. Such a system should ensure that, when a patient can derive demonstrable benefit from a drug, it is available on the NHS through either SMC approval or exceptional prescribing.”—[Official Report, 25 March 2009; c 16130-31.]
The situation in Scotland that Murdo Fraser has outlined is that
“patients in Scotland are now three times less likely than patients in England to gain access to a cancer medicine that is not routinely available”.
There are geographical variations in the rate of exceptional prescribing applications as well as variations in patients’ chances of making a successful application. Those variations are not acceptable. Relying on the exceptional prescribing process can, of course, also be stressful and time consuming.
The Rarer Cancers Foundation report entitled “The Scottish Exception? An audit of the progress made in improving access to treatment for people with rarer cancers” says that an increasing number of Scots have to rely on exceptional prescribing applications, that nearly a third of NHS boards have no written policy governing exceptional prescribing applications, and that NHS boards use variable criteria to assess exceptional prescribing applications. It is therefore clear that more work is needed to ensure that a transparent system is in place that is
“from end to end, robust, fair and well understood.”
Expenditure on drugs amounts to almost 10 per cent of the NHS budget in Scotland. I understand that tough decisions will always need to be made in the area. Weighing up effectiveness against resources is an extremely difficult task, and it must be done in a rigorous and scrupulously objective way. It may well be that the criteria that are used to make those decisions need to be examined to see whether they disadvantage drugs that are designed to treat rare diseases, but the Scottish Liberal Democrats do not agree with the argument that we should bypass the Scottish Medicines Consortium for cancer drugs. That argument is intellectually unsound, unsustainable and unfair for people who suffer from other conditions. Politicians should not second guess the SMC.
Like Macmillan Cancer Support, Breakthrough Breast Cancer and Myeloma UK, we do not support the creation of a separate cancer drugs fund. The SMC’s role is to make objective decisions about individual drugs, and recent initiatives should be given a chance to demonstrate their efficacy. Cancer Research UK has admitted that the bigger prize is the achievement of a decent settlement in negotiations about value-based pricing. I urge the Scottish Government to engage with the UK Government to ensure that the new scheme meets the needs of patients in Scotland.
The evidence that we have seen is that record keeping in NHS boards is still poor. Nearly two thirds of NHS boards do not hold information about the costs associated with funding exceptional prescribing applications. I would like to see that change. In order to help to make progress, the Government must increase transparency throughout the system and should consider commissioning research into what factors contribute to situations in which drugs are seen to be safe and effective but not cost effective and clinically evidenced.
One step that the cabinet secretary outlined in 2009 was the introduction of a set of modifiers that the SMC can apply when considering new medicines. Has an assessment been made of the impact that that more flexible approach is having on access? Have, as a result of the modifiers, any drugs been approved that would not have been approved under the standard methodology?
We seek a much greater contribution from the pharmaceutical industry, which should work with the Scottish Government to encourage patient access schemes and risk-sharing approaches. In our manifesto, we focused on improving early detection rates to increase survival and we set out plans for a new target on urgent referral for cancer diagnosis: every patient should expect to see a specialist within two weeks. We must focus on increasing early detection in order to tackle the unacceptably high number of cancer cases that are detected for the first time only during emergency admission to hospital. The subject is emotive, but it benefits from the calm and impartial consideration that the SMC can bring.
I move amendment S4M-00956.1, to leave out from “through” to end and insert:
“and that patients in Scotland are now three times less likely than patients in England to gain access to a cancer medicine that is not routinely available; notes that the Cabinet Secretary for Health, Wellbeing and Cities Strategy made a statement to the Parliament on 25 March 2009, outlining three steps being taken to improve access to new medicines, during which she said “All the developments that I have announced today will, individually and collectively, improve patients’ access to medicines on the NHS”; recognises that an earlier RCF report, The Scottish Exception? An audit of the progress made in improving access to treatment for people with rarer cancers, published in March 2011, found that increasing numbers of Scots are having to rely on exceptional case applications, that nearly a third of NHS boards have no written policy governing exceptional case applications in place and that NHS boards use variable criteria to assess exceptional case applications; believes that more work is needed to ensure that there is a system in place that is, from end to end, robust, fair and well understood, and calls on the Scottish Government to outline its response to the findings in the RCF reports, work with the Scottish Medicines Consortium and NHS boards to increase transparency around decision making and work constructively with the UK Government to ensure that the new value-based pricing scheme meets the needs of patients in Scotland.”
09:36
I, too, thank the Conservatives for bringing the debate on access to cancer drugs to the chamber, because it gives us all an opportunity to consider how well or otherwise the system is working in Scotland and what changes might be necessary. However, we do not support the development of a cancer drugs fund in Scotland. We know that treatment is changing—more and more cancer patients are diagnosed early and use of surgical intervention and use of radiotherapy are increasing. The real prize will be gained by investment in early diagnosis and treatment, which we know lead to better outcomes for patients.
Our lack of support for a cancer drugs fund does not mean that we believe that the current system is functioning as well as we all wish it to. The recent changes that the Scottish Government made, following a petition to the Parliament, are welcome and have made substantial improvements to the system. A process has been introduced whereby a clinician can initiate an individual patient treatment request. Let us look at that in a little more detail.
We are all aware of the role of the Scottish Medicines Consortium in making decisions about which drugs are licensed for use, based on clinical evidence and cost effectiveness. However, we then have 14 separate area drug therapeutic committees—one for each health board. Given that the same guidance applies to all health boards, it is difficult to understand why NHS boards take such different lengths of time to decide on cancer drug use. I will illustrate that with one example. A cancer drug that the SMC deemed to be okay to use in April 2009 was agreed by two out of the 14 health boards within a month, but it took a further 16 months before the drug was agreed for use across Scotland. We still have a postcode lottery.
A second issue that I want to raise concerns the system of individual patient treatment requests. We absolutely approve of that innovation to improve our system, because it enables clinicians to make judgments in the interests of their patients and was supposed to be our equivalent to the cancer drugs fund in England. When the process works effectively, it should support clinicians to make medicines available to those who will benefit most, regardless of cost. However, there is a growing body of anecdotal evidence to the effect that the process is being undermined in several ways: by local rules that prevent initiation of individual patient treatment requests; by routine rejection of requests; by refusal even to consider requests in the first place; and by the considerable administrative burden that is placed on clinicians, which poses an added difficulty in getting into the system. Frankly, it is hard to determine whether that perception is correct, because the Scottish Government has no mechanism that I am aware of to compare the number of requests with the number of approvals.
This is a point of information rather than a question, but Jackie Baillie will be aware—if she is not, she will be soon—that as part of the improvements that began through the Public Petitions Committee, we are gathering data on requests and approvals so that we can assess the situation across the country.
That will be helpful. I hope that we can access the information soon.
I encourage the Scottish Government to make further improvements. I pose the question whether we need 14 area drug committees. Perhaps we do, but they seem to act as a block in the system, in that they duplicate the work of the SMC and delay availability of drugs. If we are monitoring and collecting data, can we apply that to ensure that the individual patient treatment request system works effectively in every health board?
We value the work that is being done on value-based pricing of medicine, and we support any approach that leads to early detection and treatment of cancer, but we should not be proud of the fact that cancer patients in Scotland are perhaps three times less likely than cancer patients in England to have access to treatments. We need to make a difference by ensuring that our system enables access to cancer drugs.
We move to the open debate. I remind members that speeches should be of four minutes. Time is really tight.
09:40
The debate is an emotive one. I thank Breakthrough Breast Cancer, Macmillan Cancer Support and Myeloma UK for their briefing.
Murdo Fraser used the word “morally” in the context of deciding whether we should have a cancer drugs fund in Scotland, but my challenge to him would be that I think it slightly immoral to challenge the competency of the SMC in the work that it does.
The cabinet secretary mentioned fairness and equity. If a cancer drugs fund were set up in Scotland, I believe that it would not be too long before other groups would make submissions to Parliament about the fact that they did not have a particular fund. I refer to problems such as diabetes, stroke, heart disease, asthma and chronic bronchitis.
It is worth trying to ensure early detection and prevention, and the work that the Government has done in providing £30 million for early detection and prevention is a route to ensuring that patients are given the best possible care at the best possible time. I respect the work of clinicians and their judgment, and I approve of virtually all the points that Jackie Baillie made about the work that is being done to make progress. Treatment is up to clinicians; if they feel that a patient warrants a particular drug, the mechanism exists for them to make an individual patient treatment request for that drug. I welcome the information from the cabinet secretary that such requests are being monitored and that measurement is in place, so we should get that evidence eventually.
Of the devolved countries, England is the only one that is moving forward with an interim cancer drugs fund—Wales does not seem to be moving forward with such a fund and Northern Ireland has no intention of setting one up. I believe that there is no need for one in Scotland.
The debate will probably raise many issues, but I return to equality. I believe that every person who has an illness requires the best possible treatment at any given time. To ensure that that happens, we must not set up individual funds for specific conditions.
09:43
I very much welcome the debate, which highlights dilemmas that we face now, and which will become far more acute in the near future.
On a recent visit to the labs at the Edinburgh cancer research centre, I heard David Cameron—the very highly regarded David Cameron, who is the new professor of oncology at the University of Edinburgh—describing how new cancer treatments are targeting specific subtypes of cancer, which means that the already expensive cancer drugs are likely to become far more expensive in the future because they will be used on smaller subgroups of patients rather than on everyone who has a particular type of tumour. He highlighted what difficult choices we would have to make as the drugs budget increases exponentially in the next decade.
My second general point is one that the cabinet secretary made: drugs are not the only weapon against cancer. In a recent talk, Professor Alan Rodger, who was director of the Beatson oncology centre until quite recently, gave figures on the contribution that different treatments make to curing of cancer. For surgery, the figure was 68 per cent; for radiotherapy, it was 28 per cent; and for chemotherapy, it was 4 per cent. That is not to downgrade or to devalue in any way the role of chemotherapy, but we need to see cancer treatment in that broader context.
We can justifiably be proud of the Scottish Medicines Consortium, which is the foundation of our system for cancer drugs. I remind members that the director of Cancer Research UK said at the Public Petitions Committee on 29 April 2008 that
“the SMC is the envy of clinicians who work in England”,
and that it is
“a model of good practice”.—[Official Report, Public Petitions Committee, 29 April 2008; c 709.]
We can justifiably be proud of it—without being complacent.
Some years ago, guidance on the Scottish Medicines Consortium was issued that, I think, said that NHS boards should ensure that recommended medicines are made available to meet clinical need. I am concerned that there still seem to be issues with NHS boards’ implementation of SMC decisions. The briefings from Cancer Research UK and from Breakthrough Breast Cancer, Macmillan Cancer Support and Myeloma UK highlight the need for more transparency not only on decisions but on boards’ implementation of them. I am sure that everybody would like that to happen.
The briefing by Breakthrough and others also makes the key point that they want recent initiatives to have the chance to bed in. The cabinet secretary should be commended on the announcements that she made in 2009 on exceptional prescribing becoming more transparent. She talked about
“greater transparency in the flexibility that can be used by the SMC”
and
“a national framework for assessing ... patient access schemes”.—[Official Report, 25 March 2009; c 16129-30.]
That was all good but, in the interest of transparency, it would also be good if the developments on those policies could be explained to MSPs and the wider public—the cabinet secretary will probably not have enough time in her closing speech to address that point. For example, I am told that guidance on exceptional prescribing was issued in March 2011, but most people probably do not know the contents of that guidance or how it is operating. If there was more confidence in exceptional prescribing, there might be less demand for the drugs fund.
In many ways, I sympathise with what Murdo Fraser said and can see exactly where he is coming from. However, as Cancer Research UK reminds us, we should remember that a cancer drugs fund could exacerbate regional inequalities and may be doing that in England. Therefore, guidance on exceptional prescribing may be a more equitable way to deal with the problem.
09:47
For a country that is reputedly obsessed with sport, Scotland’s health record is not good and we all know it. For much of the time that the Parliament has existed, its key effort has been to improve Scotland’s health. Our record on heart disease and cancer exemplifies the problems that we face. We know that our poor health has industrial causes, we have seen improvements in relation to smoking, and we are trying to work on alcohol. The good work that has been done proves that success is possible.
Our problem now is that statistics appear to indicate that patients are less likely to survive cancer in Scotland—they are less likely to have a prolonged life here than they are in much of North America or comparable countries in Europe. I will address that concern.
Nicola Sturgeon rose—
I will not take an intervention because I have only four minutes and need to get one key principle across.
Some years ago, I visited a research unit at the University of Dundee and spoke to a senior researcher, who looked into the future and suggested that he could see a time when there would be a cure for every cancer. The problem was that every cancer would have an individual cure and he could imagine the economic problems that would arise in funding such health provision.
New medicines are becoming available, and we all know of cases, such as the one that my colleague Murdo Fraser highlighted eloquently, of individuals who believe that a particular drug treatment would be effective for them but cannot have it funded through the Scottish system, although they would have it funded through the system in England.
We are dealing with a principle that must lie at the heart of our national health service: that it must provide for everyone and be seen to do so. However, an opposite argument has been put in the debate, and I will explain why it is an opposite argument.
When the minister and others, including Jackie Baillie, talk about the principle of equity and needing to ensure that resources are allocated equally across the board, they articulate a fundamental principle of collectivisation. When we hear the major organisations that have submitted briefings for today’s debate saying that there is no need for a cancer drugs fund in Scotland, I suggest that that collectivisation of opinion is not benefiting us in the argument.
The fundamental principle that lies at the heart of my political point of view is that the rights of the few must, at times, outweigh the needs of the many. The minister has made the opposite argument today, saying that resource cannot be made available in individual cases because it could so effectively be used in other areas. While there are individual cases in which people who could benefit from the treatments are not receiving them because of the principle that the needs of the many outweigh the rights of the few, our system has a fundamental weakness.
The only party in the Parliament that has proposed a means by which we can deal with that weakness in the short term is the Conservative Party, and I therefore support Murdo Fraser’s motion.
09:51
I know that my time is limited so I will try to be brief. This debate is on another emotive subject and I take on board the story of Murdo Fraser’s constituent Gillian Bauld and her family, and what they have suffered.
I come at the issue from a different angle. I can add to Dennis Robertson’s list of diseases: as the cabinet secretary knows, my wife Stacey Adam suffers from multiple sclerosis. Scotland has a higher number of people per head of population who suffer from that condition than anywhere else in the world. The list of people who think that they should have a certain drug could go on and on. A cancer drugs fund would divert resources from other conditions such as multiple sclerosis. We need to work with and help as many people as possible.
I am not aware of the Tory manifesto: it was not required reading in Paisley during the election. I do not therefore know where the £10 million would come from. If Mr Fraser wants to tell me, I would be happy to hear it.
If the member had read our fully costed manifesto he would have seen that, among other things, we do not think that it is right to be giving free prescriptions to people such as him and me, who can well afford to pay for them. That money would be better spent on other things.
I am glad I did not read the manifesto. The people of Paisley have an entirely different idea. They do not want to have to decide to pay either for their messages or for their medication. When it comes to people who are dealing with long-term conditions, we have a completely different argument.
As the cabinet secretary rightly said, early detection is definitely the way forward. In relation to some cancers, preventative care can help. We should not kid ourselves: we are talking about lifestyle changes. As Alex Johnstone said, we have to deal with alcohol and smoking at an early stage so that we can help people.
We have to look at Scotland as a whole and at the vast number of people who suffer from long-term conditions. The Scottish Government and the cabinet secretary have considered the issues within the limitations of the resources that they have.
09:53
Everyone has said that the debate is very emotive, and it is. There is probably no one in the chamber or watching the debate who has not been touched by cancer in some way, whether directly or through family or friends. I am in the chamber today having been selected for the Aberdeen Central seat at the last minute because the lady who was originally selected was diagnosed with cancer. Everyone has been touched by the disease.
However, the solution is not a separate drugs fund. Colleagues have touched on the issue already but the argument is worth repeating. If we created a separate drugs fund for cancer, what other drugs funds would we have to create? That is the key question for me in this debate. There are huge numbers of other diseases, some of which are terminal, for which it could be argued that patients would benefit from a separate drugs fund. Where would it end?
Alison McInnes summed up the issue in her speech. She quoted her colleague Ross Finnie, who criticised the Tory plans for a cancer drugs fund, saying:
“The Conservative plan for a Cancer Drug Fund is unfair. The Scottish Medicines Consortium is the independent body designed to recommend the cost effectiveness of drugs. Politicians shouldn’t be second guessing the SMC.”
I agree with those comments. I think that members from all sides of the chamber, apart from the Tory side, would agree with them, and we should take cognisance of that.
Would the member concede that, although it is not the job of politicians to decide what drugs should be available, it is certainly the job of politicians to ensure that the rights of individuals are protected in relation to a policy that may take resource away from them to benefit other activities?
I listened to yesterday’s debate on mental health in which there seemed to be agreement that it was up to clinicians to decide what to prescribe. For the situation that we are debating, physicians can submit individual patient requests. That is the way to do it. I do not see a problem with that at all. As politicians, we should not second-guess those who are experts in their field.
Will the member give way?
I have given way once and I have only four minutes.
I wish the debate was more about prevention than about setting up a separate drugs fund. We have heard about the early detection fund, and I certainly welcome the moneys that have been put into that, as I am sure members across the chamber do. However, sometimes we do not deal with prevention very well. MSPs often have the opportunity to meet folk in the Parliament who are involved in various health organisations, such as Melanoma Action & Support Scotland, whose representatives Ken Macintosh invited to the Parliament the other week. Mary Fee attended that event as well. We could have simple solutions to deal with some problems. Melanoma is on the increase, but we charge VAT on sunblock and sunscreen. That makes no sense to me whatsoever.
The member really needs to wind up.
Thank you, Presiding Officer.
We should think about prevention rather than necessarily having to deal with cures all the time.
09:58
I welcome the opportunity to speak in such a sensitive but crucial debate. The Scottish Conservatives are right to bring the issue to the chamber today.
I support any initiative to improve the treatment of cancer patients, but I do not believe that a cancer drugs fund is the answer. A drugs fund would not solve the problem of the drug approval system but would simply bypass it. The Conservatives’ proposals do not address the root causes of why patients might be denied access to some treatments—a view shared by Breakthrough Breast Cancer, Myeloma UK and Macmillan Cancer Support.
Murdo Fraser’s motion is right to point out the findings of the Rarer Cancers Foundation, but it does not address why there are treatments in England that are not given north of the border. The drug approval systems in both countries are very complex, and we must improve transparency around the Scottish Medicines Consortium, its decisions and their implementation. I back calls by Breakthrough Breast Cancer, Myeloma UK and Macmillan Cancer Support for an investigation into the factors that contribute to the SMC rejecting drugs on the basis of cost and clinical effectiveness, and how we can address such situations.
I find it worrying that the Conservatives would pay for a cancer drugs fund by bringing back prescription fees. To me, that is a tax on certain illnesses to pay for others. The money that would be used in a drugs fund should instead be used to improve the early detection of cancers and reduce the waiting times that patients experience, as the Labour manifesto pledged to do.
It is wrong that someone with suspected cancer should wait four weeks to see a specialist. As much as we need to improve and extend the life of a cancer patient, a drugs fund does not go far enough. More early detection and prevention of cancers are needed.
Even the Society and College of Radiographers has criticised the cancer drugs fund in England—the system that the Scottish Conservatives have based their plans on. Audrey Paterson, director of professional policy at the Society and College of Radiographers, said:
“it would only take a fraction of the £200 million budget to deliver cutting edge radiotherapy services across the country and the impact would be immense.”
That is an example of how the professionals feel about the fund in England. Miss Paterson is correct to say that more money should be invested in more effective treatment services.
I understand that some patients might be beyond the stage at which radiotherapy would help with their cancer, and that is where I feel that the heart of this debate must lead. Should we be providing drugs that improve the life chances of the cancer sufferer or drugs that simply extend their life? I would hope that any drug approved by the NHS, the SMC or any Government would do both.
As I said, this is a very sensitive debate, and party politics should play no part in it. We need more investment in early diagnosis and successful treatment and we need to rid each health board of the postcode lottery.
10:00
Like many in the chamber and in wider society, I have experience of losing a family member to cancer. It is worth noting that none of us in the chamber is immune to the situations that people across Scotland face in that regard. That said, we must always try to avoid becoming too emotional during debates on this issue; we must be rational as well as emotional when we discuss cancer and, in particular, cancer treatment.
It is fair to say that the cancer drugs fund has not met with the universal acclaim that one might have assumed it received if one had listened to the speeches from Conservative members. Indeed, a recent article in the oncology commission journal of The Lancet stated of the fund:
“because these decisions are regional, it reintroduces the postcode lottery”—
thereby leading to disparities in England, as the cabinet secretary outlined.
Mary Fee referred to an article in The Daily Telegraph, which pointed out that the Society and College of Radiographers had stated clearly that the fund was diverting money away from treatment and areas such as radiotherapy services. There is clear evidence that the cancer drugs fund is not all that it is cracked up to be, so we should exercise a degree of caution about it.
It is entirely appropriate that we focus our efforts on prevention and preventative spending, which the Government is seeking to drive forward. The Government is extremely keen on early detection, which is an approach that I support because the earlier a cancer is detected, the greater the patient’s chances of survival. We should focus our efforts on early detection, rather than diverting money towards end-of-life treatments for cancer patients. I fully accept that this is an emotive issue, but we must always take into account the fact that in many cases prolonging life does not increase quality of life. The key consideration for any health professional looking at life-prolonging treatments, must be the quality of life for the individual, not necessarily longevity.
In that regard, we must ensure that there is expenditure on end-of-life and palliative care. I am concerned that if we were to focus our efforts simply on directing money towards the treatment of cancer, as well as neglecting early detection we could neglect appropriate end-of-life care for individuals who no longer respond to treatment or who require simply to be made comfortable towards the end of their life.
The oncology commission journal of The Lancet states:
“Today, early detection and cancer-specific treatment advances have resulted in increased cancer survival”
rates. I support the Government’s focus on early detection, because it increases cancer survival rates—it is where we should be targeting our efforts.
This is a worthwhile debate, but the establishment of a cancer drugs fund would be a distraction. Other organisations that deal with terminal conditions would ask us, “If cancer drugs are a priority, why not drugs for heart disease or Alzheimer’s?” We must ensure that, at all times, the health of the nation in general is the priority for this Parliament. Yes, there will undoubtedly be individual cases that need to be dealt with—there always are—but the appropriate way to deal with them is as individual cases, as the cabinet secretary said.
Where there are local difficulties, it is entirely appropriate that they are highlighted to Government so that it can see whether it can make changes to the mindset at a local level, but dealing with local difficulties on a national basis is using a sledgehammer to crack a nut.
Mr McDonald, will you conclude?
I will conclude with one final quotation from the oncology commission journal of The Lancet:
“prevention is also essential and this too demands political will, ample funding, and a substantial change in mindset”.
This Government has demonstrated the political will, provided the funding and made the change in mindset required to ensure that prevention is at the heart of what we do.
We turn to closing speeches. I call Alison McInnes, who has kindly offered to take less than her allocated time.
10:05
I listened carefully to the cabinet secretary’s speech this morning and found it illuminating. The situation is not as clear-cut as the Conservatives have suggested, and her point that comparisons are not always valid was telling.
Most of us have acknowledged that a great deal of work has been done here in Scotland since the Public Petitions Committee inquiry. We know that the SMC is actually quite responsive. The cabinet secretary reminded us that the SMC reviews all new drugs, while NICE reviews only a selection. It is easier for the system to be more responsive in such a small country, but Jackie Baillie rightly questioned the geographical variations in the approach of area drug and therapeutics committees and whether they are putting a brake on the system. I support her request for a review of that, which seems a sensible suggestion.
I re-emphasise the need to invest in early detection. Alex Johnstone referred the fact that our outcomes are poorer when compared with those in the rest of Europe, but I agree with the comments of most other members on the need to focus on early detection. That is the way to drive down that problem. At the moment, too many cancers are detected only during unplanned admissions.
The truth is that at the heart of the debate is a question of fairness. I do not mean to sound harsh—I understand the suffering caused by these dreadful illnesses—but I really do not understand why medicines for one particular set of illnesses should be exempted from the process of balancing clinical effectiveness with health economics. Dennis Robertson among many others echoed that point, drawing attention to the needs of stroke patients, heart patients and those with MS.
Pharmaceutical companies could do much more to bring drugs into the mainstream more quickly, and the value-based pricing approach that is being developed in Westminster should open up access to more drugs more quickly by factoring in more considerations. There are questions about how the new scheme would interact with the existing arrangements and with the work of the SMC, so again I urge the Scottish Government to work with its colleagues in Westminster to ensure that the new proposals serve the needs of Scotland.
10:07
I welcome the fact that the Conservative Party has raised what is an important issue. Although it could have been an emotive debate, it has been conducted in a sober manner. That is only as it should be.
As the cabinet secretary, Jackie Baillie, Mary Fee and Mark McDonald have all said, and as others have alluded to, early diagnosis and treatment must be our priority. We have agreed that, and the funding has been put in place. We may slightly disagree on how that funding is being applied, but nevertheless that is the priority, which is very important.
As with everything, we must start with the needs of the patient. New medicines for cancer are in the pipeline—possibly eight more this year, and many more to come—but new medicines for other conditions will also be in the pipeline.
The Scottish Medicines Consortium has served us extremely well. As Alison McInnes and Malcolm Chisholm indicated, it has been highly praised and internationally accepted for its speedy work. The industry has also been happy with the SMC and the interactive approach that it has adopted, apart from some problems around orphan and ultra-orphan drugs.
We cannot ignore the fact that, unlike the equivalent situation in England, SMC approval does not mean automatic availability. In Scotland, we have the additional hurdle of 14 area drug and therapeutics committees, which can make different decisions on licensed and approved drugs. As my colleague Jackie Baillie said, it can take between one and—in at least one instance—16 months to introduce an approved drug. That variation is unacceptable, and it is questionable as to whether the system is fit for purpose.
Why is that relevant? If not approved by the Scottish Medicines Consortium, a medicine enters what was known as the exceptional needs system. If the area drug and therapeutics committee does not approve a medicine that is licensed and approved by the SMC, it also enters that system.
The approach in England of a transitional fund followed by value-based pricing is wrong. The fund will almost certainly be inadequate. The number of drugs in the pipeline will outstrip demand and England will be faced yet again with the same problems that we face.
A further reason why the fund is inadequate is that, as many members have said, it discriminates between cancer and other conditions. New drugs will be developed for many non-cancer conditions. Will they, too, be given specific funds? Discrimination, as opposed to some form of clinical rationing, will not be tolerated for long. As George Adam and Kevin Stewart indicated, discrimination could be a major problem.
England has not eliminated the regional variation. The equity to which Alex Johnstone referred is not occurring in the cancer drugs fund in England. We need to look at that.
Is there a problem? Yes—there is a problem, if Scots are obtaining substantially fewer cancer drugs than people elsewhere. A petition led to chief executive letter 17 in 2010. The new system of individual patient treatment requests, or IPTR, came into effect only in April. I have a number of questions for the Government about the IPTR system. Is it in place across all 14 health boards? Is the whole process, and not just rejection and acceptance, transparent to the public and individuals? Is it fair to the individual patient, their family and their clinician? Is it uniform and consistent both within individual boards and across Scotland, or is it yet another postcode lottery? To whom is the system accountable in the community? Is it accountable to Parliament? Do the 14 health boards have the capacity to consider the complex issues involved? Is the membership of the panels broadly similar? Is the community represented? Is the cost-sharing mechanism adequate?
I hope that those questions will be answered openly and transparently.
10:12
Like others, I think that this has been a good debate. It has been a calm, rational and high-quality debate. Kevin Stewart helpfully reminded us—if we needed reminding—that this is not an abstract debate. All of us, at some point in our lives, will be touched by cancer. It is important to keep that in mind.
Although I do not agree with the motion, I thought that Murdo Fraser and Alex Johnstone made good points. Our cancer survival rates are not as good as they should be and not as good as I would want them to be. I think Parliament recognises that. However, I challenge the proposition that that is entirely down to access to drugs. In my view, it is largely down to co-morbidities and late diagnosis. Those are what we need to tackle effectively if we are to make significant improvements to cancer survival rates. That is what this Government has committed to, backed by resources.
Alison McInnes, in a good speech, reflected on the improvements that have been made, and the need to monitor them and ensure that they have the desired effect. She specifically asked whether any drugs had been approved as a result of the new SMC modifiers. The quick answer to her question is that, so far during 2011, the SMC has approved three cancer medicines in relation to which modifiers could be applied.
Jackie Baillie rightly said, as did others, that we should always look critically at how the system is operating, not just in principle but in practice. I am happy to give further consideration to the points about area drug and therapeutic committees. Points were made by Jackie Baillie, Richard Simpson and others about individual patient treatment requests. As I said to Jackie Baillie in an intervention, we have asked all health boards to provide us with information on the number of requests, the number of approvals, the number of appeals, and the drugs and the indications concerned. That will be important information to inform our judgment as to how the system is operating.
Members will be interested to know that information made available in January this year as a result of freedom of information requests showed that over the past three years, 92 per cent of such individual patient requests had been approved by boards.
Malcolm Chisholm and others rightly pointed out—and I echo and endorse this point—that the Scottish Medicines Consortium is respected not only in Scotland but throughout the UK and the world. That does not mean that its decisions should be set in stone and that it should never look to improve how it does its work, but it is a respected organisation that applies respected methodology.
Malcolm Chisholm used the key word in the debate: transparency. Transparency is crucial in determining how fairly and flexibly the system is working. I could not agree with his point more strongly. We have been seeking transparency and will continue to seek to bring it to the whole process. I say in response to Malcolm Chisholm that I am happy to issue the guidance and other information to MSPs—or at least to those who are interested in receiving it.
Although a number of considered speeches have been made, I cannot respond to all the points that were raised by Mark McDonald, Mary Fee—who made a particularly considered speech—and other members.
I will make two key points. I hope that the first is a point of agreement rather than a point of contention: we should be working continuously to improve access to drugs. For me, that part of the debate is not in contention. I believe that we should be working to improve access to all drugs, not just some drugs, in a way that is fair and consistent. George Adam very powerfully summed up the importance of that.
I get letters from cancer patients who passionately believe that a particular drug can benefit them. Such situations are heartbreaking, but I get similar letters from patients with Alzheimer’s, MS or heart disease, who also believe that a particular drug could have benefits. I therefore believe that fairness, consistency and equity are very important in this debate.
The second key point is that we must tackle cancer in every way that is at our disposal. A couple of weeks ago I visited the Western general cancer centre to see new state-of-the-art radiotherapy equipment. The Western general is one of only a handful of cancer sites in the whole of Europe that has such equipment, which will transform how radiotherapy and surgical procedures are delivered.
Members also highlighted the need for earlier detection. As I said, our relatively poorer cancer survival rates are down to the fact that, for a variety of reasons, we present later with symptoms and we are diagnosed later. Therefore, no matter how short our waiting times are, and often no matter how good our drugs or other treatments are, the chances of survival are reduced because the disease has progressed too far.
There are big challenges. I do not underestimate them and I am committed to doing everything that we need to do, but let us do it comprehensively, fairly and consistently.
10:18
I welcome the debate and also the tone of all members’ speeches. We note the cabinet secretary’s commitment to look further into many of the issues that have been raised in the debate. We might disagree on many things, but many members raised concerns about transparency and so on.
There is no doubt that huge progress has been made in cancer treatments and recovery rates. Discussions around cancer are now generally about treatment, hair falling out, Maggie’s Centre and getting back to work. No longer do we say, “How long has he got?”
Although I acknowledge the progress that has been made on so many of the common cancers, there is undoubtedly still much more to be done on cancers such as pancreatic cancer, melanoma—which Kevin Stewart raised; I was also at the dinner that he mentioned—and cancer of the oesophagus, to name but three.
As Murdo Fraser said, 14 treatment requests per million population in Scotland are approved under the individual patient treatment scheme. In comparison, 48 per million population are approved in England under the current system.
I commend the work done by the Rarer Cancers Foundation to highlight the needs of people with more exceptional cancers. It was always going to be the case that drugs for the treatment of such cancers would be more expensive, given the lack of economies of scale in production and the smaller patient group for purchasing. The foundation said in its briefing for the debate that it has been contacted by patients in Scotland who have been unable to access treatments that their clinicians wanted to prescribe, which are available through the cancer drugs fund to patients who live in England. Therefore, it is right and proper that we have this debate to flesh out the differences between the two jurisdictions and ensure that patients in Scotland are treated equally and fairly.
As the cabinet secretary said, the UK falls behind most European countries on the number of cancer drugs that are prescribed and on the amount of money that is spent on the drugs, according to a report from Cancer Research UK today. We should not just compare ourselves with England.
As members said, even if a drug is approved by the Scottish Medicines Consortium, it might not be routinely available in NHS Scotland. As Richard Simpson said, the opinions of local drug and therapeutic committees can vary between the 14 health boards. The Liberal Democrat motion, in Alison McInnes’s name, makes a good point in saying:
“nearly a third of NHS boards have no written policy governing exceptional case applications in place and ... NHS boards use variable criteria to assess exceptional case applications”.
I am pleased that the cabinet secretary will look further into the matter. The Rarer Cancers Foundation’s reports, “The Scottish Exception? An audit of the progress made in improving access to treatment for people with rarer cancers” and “Exceptional Scotland? An audit of the policies and processes used by NHS boards to determine exceptional prescribing requests for cancer treatment”, showed that a number of treatments that had been applied for via exceptional case requests in Scotland were SMC approved.
One or two members said that the individual patient treatment requests system is subject to serious and considerable delay. That is time that cancer patients often do not have.
Malcolm Chisholm, Richard Simpson and Mary Fee talked about the need for greater transparency and clearer communication on the rationale for SMC decisions so that patients and clinicians fully understand why certain drugs are not approved for use by the NHS in Scotland. We have a nation of patients who are much better informed, through online information, and who clearly understand why drugs that are recommended in one country are not recommended in another. However, when a drug that the SMC has approved is refused by the local health board drug and therapeutic committee, it is natural that the patient feels that they have been denied something. It is also obvious that these difficult financial times could lead to postcode prescribing in Scotland.
For all those reasons, the Conservatives support a £10 million national cancer drugs fund for Scotland. I understand that the cancer drugs fund in England has helped more than 5,000 patients. Mark McDonald made a good point about patients’ quality of life, which is precisely what cancer drugs bring. I remind members that Mike Gray, from Buckie, who lodged a petition on cetuximab, worked until three weeks before his death.
On value-based pricing, I note that the Scottish Government is working with the UK Government to ensure that the scheme that is due to be implemented in 2014 will meet the needs of patients in Scotland.
I thank all members who spoke in the debate. It is right that we highlight the progress that has been made, but much more can be done and is being done to diagnose and treat cancer. It is right that we continue to examine how we can improve treatment for all people with cancer in Scotland. I support the motion in Murdo Fraser’s name.