 The final item of business is a member's business debate on motion 12545 in the name of Maurice Corry on Orkambi. This debate will be concluded without any questions being put. Can I ask those members who wish to speak in the debate, to press the request, to speak buttons now, and I call on Mr Corry to open the debate seven minutes, please, Mr Corry? Thank you, Deputy Presiding Officer, and thank you to the members who supported my member's motion so very enthusiastically over the last week or so. Cystic fibrosis is a devastating genetic disease, which has a terrible effect on patients and families. From very early in life, children who have cystic fibrosis can exhibit multiple manifestations of the disease, including structural lung damage, abnormal lung clearance, which is a way of measuring airways health, and also face nutritional impairments. The damage that they sustain to their lungs is progressive, worsening over time, and leads to increasing impairment of lung function. One consequence being that people with cystic fibrosis are more susceptible to life-threatening lung infections. Due to geographic origins of cystic fibrosis, the UK has a very high prevalence of the disease and accounted for some 12 per cent of global population of patients. NHS Scotland has estimated that one in 24 Scots has a genetic mutation that, if present in both parents, can lead to a child being born with cystic fibrosis. According to the Cystic Fibrosis Registry Scotland, there are approximately 900 people in Scotland with cystic fibrosis. They have a median age of just 21 years old and the median age of death is just 31 years old. Only 5 per cent of cystic fibrosis will live to see their 50th birthday. I want you to think about that for a second. My 31st birthday is but a distant memory, but for those with cystic fibrosis reaching that milestone is just 50 per cent chance of getting to a 50th birthday is just 5 per cent chance. Now I want you to imagine if you had died before one or both of those birthdays. Think about what you would not have got to do. Think of the experiences you would have missed, the memories created with loved ones that would never have happened. That is the reality for so many that suffer from cystic fibrosis. Surely it is incumbent on us to make sure that those cystic fibrosis have the best chance of having many of those experiences and for as long as possible to create those memories. That is what Orkambi can do. As I note in my motion, clinical data has shown that the drug is able to slow decline in lung function, which is the main cause of death from the condition, by 42 per cent and it has cut the number of infections requiring hospitalisation by 61 per cent. According to the Cystic Fibrosis Trust, around 40 per cent of those who are cystic fibrosis in Scotland would benefit from the treatment with Orkambi. Orkambi is different as well from traditional treatments for cystic fibrosis because it is a precision medicine. Traditional treatments for cystic fibrosis aim to reduce symptoms and complications, but progressive damage still occurs, which means that symptoms and complications increase with age. What precision medicine does is target the root cause of cystic fibrosis, the dysfunctional protein that causes cystic fibrosis. Precision medicines have the potential to preserve or restore lung function, slowing decline and improving life expectancy and quality of life for patients. Further, precision medicines are being developed. Within five years, around 90 per cent of people with cystic fibrosis could be treated with new medicines that could transform cystic fibrosis from a condition that kills you to one that you can live with. However, people with cystic fibrosis are worried that they will not get access to these life-changing medicines in Scotland due to the process that the medicines need to go through to become available to the NHS. Orkambi received its licence two years ago but is still not available here, but it is available to all eligible patients in Austria, Denmark, Germany, Luxembourg, the Netherlands, Italy, Ireland, Greece and the United States. That is because the Scottish Medicine Consortium announced in 2016 that they are unable to recommend a drug due to its cost. That is despite them acknowledging that the drug is important and effective. Since then, those suffering from cystic fibrosis alongside organisations such as Cystic Fibrosis Trust have called for negotiations and a fair, sustainable pricing deal for Orkambi. There can still, sadly, be no progress and still has not been. People with cystic fibrosis are still waiting for help, while their health and quality of life declines. I know that elsewhere there have been success in negotiating prices with Governments and Vertex, the company that makes Orkambi and Caledadaco another cystic fibrosis precision medication are doing so and have done so. Caledadaco is available in Scotland via the new medicines fund following the intervention of ministers in 2013, but Orkambi had not and has not the same intervention. It means that the inequality has been created by cystic fibrosis patients and between them, depending upon what treatment they require. A good example of different ways of opening up new medicines is the Republic of Ireland by a greener portfolio approach, which is a long-term solution. That means that when new medicines are cystic fibrosis are manufactured and licensed, they have become available for patients in that country. That deal means that the medicines, both current and future, are capped at overall prices for a set of amount of time, meaning that doctors can move the patients on to new medicines if they would better address the patients' particular type of cystic fibrosis. That approach has made major benefits. Science is now moving so quickly now that I worry that the older models no longer work for bringing medicines into the system. In conclusion, I want to quote Mr and Mrs O'Neill of Lensie from my region, who wrote to me and encapsulated what I think this debate is all about. My son is 15 months old and he has a future. He should not be denied access to precision medicines that will support him to live the life that he so rightly deserves. Although not now, Conan's health has deteriorated at some point. His life should not be shortened even further by denying Conan and the other 907 people in Scotland who live with cystic fibrosis access to the medicines that they need. It is not just about Okambie, it is about what comes after Okambie, and that is why it is so important that an approach can be made that allows access to the pipeline of the future of life-giving medications and treatment. Scotland led the way with access to Caledico, and it must lead the way again. We must have unity throughout the United Kingdom, along with nice who have approved the medicines of Okambie in England and Wales, and we should have the same in Scotland. I remind all members who wish to speak, please press your request to speak button. I see some folk have woken up. I now call for the open debate, Alex Neil, to be followed by Miles Briggs. Thank you very much indeed, Deputy Presiding Officer. I congratulate Maurice Corry on obtaining the debate and, indeed, in his opening remarks, which I think were very informative and well balanced. One thing that Maurice Corry did not mention was that the impact of cystic fibrosis from birth is, on average, to result in a decline of the lung function on average by about 2 per cent a year. That means that, by the time a cystic fibrosis sufferer gets to the age of 10, they have lost about 20 per cent of their lung function. By the time they get to 20, they have lost 40 per cent, and by the time they get to 30, they have lost 60 per cent of their lung function. I emphasise that because this debate is as much about timing as it is about anything else, because time is marching on for cystic fibrosis sufferers. Therefore, the longer it takes to complete the process to get approval for the new drug or can be, and successor drugs, the more time it will be lost for the sufferers of cystic fibrosis. Therefore, I think that this has got to be treated as a very urgent case indeed. The good news is that, as Maurice Corry said, we are on the brink of a major transformation in the treatment of cystic fibrosis because of the advanced nature of the new drugs that are coming on the market. However, as a former health secretary, I know the challenges that arise when you have expensive new drugs being made available, whose impact is demonstrable. However, clearly, when you are looking at the entire picture of the health service, you have to be mindful of the cost, not just the unit cost, but the overall cost of any new drug. That is why the SMC system was set up to take an objective, non-political look at it. However, sometimes it is necessary for the Government to knock heads together. The stage that we are at just now, particularly with Orkambay, is that we need the Government to knock the heads together of Vertex, the manufacturer, and the SMC and the NSS who are responsible for the procurement on behalf of the Scottish Government. It is right that politicians are not directly involved. The role of politicians is to set the framework and, if necessary, to intervene where there is undue delay. Therefore, what I want to concentrate on for the rest of my speech is to make a suggestion to the Scottish Government and to Vertex about the way ahead. The one thing that we are all united about is the need to do everything that we possibly can within our power, budget and resources to make sure that the sufferers of cystic fibrosis get the treatment that they need and get it at the earliest possible opportunity. I welcome the decision, which became effective about two weeks ago, to make Orkambay available under what used to be called the individual patient request system. That is progress, but it is not enough progress. As we know, getting approval is not always fast and it is not always guaranteed. That is why the quicker we get general approval for this drug, the better. I believe that the time has come— I am sorry, but you have only 30 seconds. I am sure that you want to use them. The time has come for the Scottish Government to knock heads together, Vertex on the one hand and the NSS on the other. I think that the two things that are necessary are this. First of all, the agreement of the Government to enter into what are called portfolio negotiations is out with due process. That is a novel way of negotiating access to those drugs, but do not let bureaucracy and being outside due process hold us up. Authorise the start of those discussions. They will not be finished quickly, but in the meantime, I believe that Vertex should make the drug available at some kind of reduced price so that, when the deal is done, both sides end up with where we are trying to get to, but let us do it sooner rather than later. I call Miles Briggs to be followed by Anna Sarwar. I apologise that I am unable to stay for the whole duration of the debate as I am chairing the cross-party group on cancer this evening. I would like to begin by congratulating my colleague Maurice Corry for securing today's debate and to commend his excellent speech in which I wholeheartedly agree with. I also very much welcome the broad cross-parties that exists on this issue, and I pay tribute to the work of the Cystic Fibrosis Trust and constituents in my own Lothian region who are campaigning hard to ensure that a Cambie is available on the NHS to all those who need it. And one such constituent of mine is Jenny Landers from Musselbur, who emailed me just a few days ago about her daughter Freya who is five years old and has Cystic Fibrosis. Jenny told me that every day Freya takes up to 30 tablets, two nebulisers and does 45 minutes of physiotherapy just to keep well. Even with these treatments her health is slowly declining. She's already been admitted to hospital three times for up to two weeks at a time. Currently her future is very uncertain as many people with CF are still dying in their 20s. In one year she will be eligible for a Cambie. This drug has a potential to slow the pace of disease, giving her a much better chance of staying well into adulthood, having a career, living independently and having a family. Things that most people take for granted. It's not right that we are denying people with CF the chance of that better life. None of us will be able to disagree with Jenny's sentiments, which are shared by so many parents, families and friends of people with CF in Scotland and across Scotland. The challenge, as Alex Neil laid out to us, is how each of us as elected representatives of the Scottish Government, the manufacturers and the processes within SMC translate the desire and the acceptable fact that this medicine is a beneficial treatment and is so effective into access to that drug on the NHS and an affordable rate that is fair for everyone involved, which is sustainable for our NHS. In quite a few ways, the campaign to access or Cambie mirrors that of Projetta and the campaign that I have been involved with recently, where women with breast cancer want access to another life-extending drug. I am pleased that the Projetta manufacturers have a name that they will be resubmitting to SMC, and I hope that we will see vertex do similar for or Cambie in the shortest possible time. I want to commend vertex's scientists. They have a large pipeline of potential CF treatment in development, which could offer a great deal to so many patients in the future. That is something that we should celebrate, but how we make sure that SMC meets that challenge is something that I think that we all should be looking at. I welcome the fact that recent reforms mean that clinicians can make requests to NHS boards on individual patient basis for them to access drugs that are currently not approved by SMC, but such requests will not always be successful, and campaigners understandably want or Cambie to be available to everyone who needs it without delays or extra processes to go through. Maurice Corry referred to the process through which or Cambie was made available in the Republic of Ireland, and I think that we need to examine that and look at whether our systems are capable of mirroring this situation as well. I again welcome today's debate. It is a real chance for our Parliament to focus and has brought the campaign for a Cambie to our Parliament. I hope that the whole Parliament will unite in supporting our constituents whose lives have been so improved by access to a Cambie, which is routinely now available in so many other EU countries and elsewhere. I hope that the minister in responding will be willing to meet MSPs from across-party who are working with his CT trust and others on this, and I hope that she will be able to, in her closing speech today, ensure that she will be doing whatever she can to facilitate in getting to a position where vertex can put this in an acceptable way now and put in another application. Patients with cystic fibrosis in Scotland, so many of whom face such limited life expectancies, and their families rightly expect the Scottish Government to step up and get things moving forward. I and other MSPs from across the chamber will keep the pressure on the Government, and I believe that above all we need to see action on this so that our constituents can see and realise their potential. Annas Sarwar, followed by John Finnie. Thank you, Deputy Presiding Officer. I start by congratulating Maurice Corry for bringing forward this debate. It is an important and timely issue, and one that has far-reaching consequences is literally an issue of life and death. Our Cambie is a life-changing drug. It improves the quality of life for cystic fibrosis patients. I think that the genuine cross-party support and nature of this debate emphasises how important this issue is. I recognise that this is not an easy issue for any minister or any Government, and I hope that, collectively, we can find a solution in the best interests of patients. It is worth noting, though, that our Cambie is available in many countries across the world, including our European neighbours, Ireland and Holland. It has been more than two years since the drug received its European Medicines Agency license, and it has almost a decade since the first clinical trial started in Scotland. Yet, today in Scotland, it is still not available to Scottish patients. The reason given, and I quote directly from a letter from the cabinet secretary's office in inverted commas, is that justification for the treatment's cost in relation to its benefit was not sufficient. What price do you put on life? What price for life for individual families, for individual patients? That will not be very much comfortable. I recognise the difficulty that the Government has and the difficult decisions that the SNP has to make, but we have to do that in the context of having a genuinely humane approach on those issues, particularly when we are talking directly about people's lives now. Miles Briggs mentioned that it is not an isolated case. There is the issue of perjetta, which is also a current running issue. That demonstrates the challenge that we have around making access to vital medicines. That is a vital medicine available to breast cancer patients in other parts of the UK, but it is not available to patients here in Scotland that will impact on their life expectancy. That requires a robust response and approach from the Government. I echo what Alex Neil said about the very fair-minded approach that he took, the call that he made on the pharmaceutical company, the call that he made on the Scottish Government and the SNP to please do knock on their heads together and find a solution in the best interests of patients and their families. I will make a few other really quick reflections on the letters that we received from the cabinet secretary. I was really disheartened prior to the letter that came in today, but I was disheartened by the letter that came on 31 March that was addressed to Jackie Baillie and Alex Neil. I was disheartened because it was a former health secretary, a genuine cross-party approach, and there was not a personal response from the cabinet secretary. I think that that was really ill-judged on behalf of the cabinet secretary. I am pleased that she has followed up today with a letter to both Mr Neil and Ms Baillie directly on the issues, but it should not take the front page of a national newspaper or a debate in this Parliament for the cabinet secretary to respond directly to fellow parliamentarians. It should not take that. I can also make a comment about the IPTR process and the ease of the access to the IPTR process. I am welcome from the discussions that we had on Projeta about the change in approach and how it will not be judged on money, but based on the clinical efficacy, that is to be welcomed. Alongside that, we have to recognise that it will still impact on budgets of health boards, so we need the Government to back up the health board budgets to make sure that there is money available to make those drugs available if those IPTRs are independent. Individual patient treatment requests are approved. In closing, I will say about the SMC review. Although perhaps that is more far-reaching than the SMC's review itself, there were recommendations in the SMC review that could have dealt broadly with the challenges that we face on Arkambi and Projeta—the ability to negotiate, the ability to make the drug available while the negotiations take place through an interim accepted period. I please urge the Government to knock heads together on the issue of Arkambi and Projeta, but also get on and implement the recommendations in the SMC review so that we can stop situations or limit situations like that happening again in the future. I am about to tell you off. I say gently to the members of the public in the gallery that we do not permit applause from the public gallery. I know why you are doing it. It happens regularly, but I am afraid that it is not permitted. I now ask John Finnie, followed by Jackie Baillie. Thank you very much indeed. I would like to congratulate Maurice Corry on bringing this here. Colleagues will have noticed that my colleague Alison Johnstone has waited until the last minute. She has to chair a meeting tonight, but I am going to refer Alison Sir Health spokesperson. I am going to refer to some of her work on that and also some personal reflections. One of them is that I have great admiration for the achievements of the pharmaceutical industry. However, public health should not be in the hands of profit makers. I am quite uncomfortable with what I see as some of the wheeling and dealing that is openly talked about in relation to this. This is individuals that we are talking about. My attention has been drawn to the just treatment campaign and the Crown Use Licence, which I know that Alison Johnstone has written about. First, accepting that that is not a quick solution to anything, I think that there is a feeling that the scrutiny and public concern that might be directed at companies is a relative of that intended approach, which is a legal mechanism that allows patent law to be overridden and another producer put in place might result in reduced prices. Alison Johnstone did write to the cabinet secretary in the following terms when she said that she was concerned about a lack of clarity about the basis in which the Scottish Government intervenes directly in decisions about drug approval and purchasing. On this specific, understandably, many cystic fibrosis patients feel that it would be inequitable for the Scottish Government to intervene in order to make cystic fibrosis treatments that act on one genetic stratification available, but not so for others. I am not a legal person or a health person. I understand about the Montgomery view and the Scottish Government is committed to implementing it. I think that what is incredibly important is that decisions are medically led, but of course there is a role for parliamentarians and politicians in this. People will be aware that there is a concern about what is seen as the politicisation of access to medicines. Alison Johnstone touched on that when she said in that very same letter, that she believes that we now have an opportunity to develop a robust, transparent and equitable approval process that is open to scrutiny. One of the review's recommendations is that the comparative review of arrangements for the introduction of medicines in other countries should be undertaken. Alison Johnstone goes on to commend New Zealand's pharmic model and the potential to adapt aspects of that model in the Scottish context. Other members have alluded to some drugs, and I suspect that next week there will be another one, and in the future months there will be another one. We must get the process right. I think that that is most important that we get the process right. I am very uncomfortable when we are talking about people's lives to be talking in terms of some of the sums of money. The reason that I have a particular interest in this is because I have a constituent Hannah McDermid, and I was delighted that her and her mother came to the Parliament as my guest in January this year. Many of you actually signed a motion about Hannah. Hannah was the University of the Hinds and Islands higher education student of the year. She achieved BA honours in Gaelic language and culture at Salma Rostig, which she did laterally as a distance learning. She was diagnosed at 17 weeks with cystic fibrosis, and her health has deteriorated indeed in the time that I have known her. Most recently she has been coughing up blood due to a condition that I am unable to pronounce. She has just managed to get her lung function back up to 50 per cent after it had recently declined to 45 per cent, spending two hours a day doing physio to clear mucus from her chest and lungs. Hannah has given me a whole list of her condition symptoms. She is a charming young woman and she is very grateful for the assistance that she gets from her nurse Leslie. Her mother is deeply affected by the condition. Yes, it is very important in relation to this drug that there are other drugs that are very important. We must get a process right. We must get it right. As someone said, what price are life? Thank you, Mr Finlay. I call Jackie Baillie to be followed by Emma Harper. Presiding Officer, let me congratulate Maurice Corry on securing this debate. It was a few weeks ago that I organised a cross party meeting of MSPs with Alex Neil, who, of course, was the former health minister that made Kaleidico available for cystic fibrosis sufferers in Scotland. That meeting was attended by a substantial number of MSPs from every single party in this chamber, many of them here tonight. It was hugely encouraging that, for things that matter, we can put aside our differences and join together to fight on a common cause. I organised the meeting because of my constituent, Kelly Gallaker. Kelly has cystic fibrosis. She is bright, intelligent, and is a happy young woman. She recently bought a home with her boyfriend, much to the delight of her parents, because it meant that she left the house. She works with the local council, she has dedicated her spare time to raising awareness of the illness and raising thousands of pounds to help improve the day-to-day lives of those with cystic fibrosis. The debate is happening. I promised that I would not do this. The debate is happening because she and hundreds of others cannot get access to or can be a drug that is available to CF sufferers in Ireland, in America and in the Netherlands. It is a drug that would enhance her life. It does not just stop at or can be. The next generations of medicines that will effectively ensure that those with CF live to a ripe old age are just around the corner, so we have a historic opportunity to literally save lives. Instead of one drug at a time, the pharmaceutical company is offering, as Alex Neil described, a portfolio deal for all the drugs, something already in existence in Ireland. They are in discussion with the NHS in England, in Wales but not on the same terms in Scotland. Instead, we are talking about one drug, which is all the Scottish NHS seems to want to do when we should be talking about the opportunity to access them all. I wrote to the Cabinet Secretary for Health and Sport on 25 April, along with Alex Neil, asking her to meet Kelly in a cross-party group of MSPs. I wrote again on 30 May, following our cross-party meeting, with the same request. I received a response on 31 May, saying that her diary was too busy to meet MSPs but that she would meet Kelly, and that was welcome. I received a further email from her office yesterday, simply noting the second letter, and when I contacted her office immediately to ask if that was it, I was told that she had nothing to add. I have to say that I am genuinely disappointed. I was then very happy to receive a letter about two hours ago, just before the debate, outlining the PACS2 process, which, of course, is for individual patients to apply for drugs and the method for appealing decisions. It is helpful, as Alex Neil said, but it takes time and time is something that CF sufferers do not have. The drug was licensed two years ago, and it is still not available. The Cabinet Secretary for Health and Sport has also now agreed to meet Kelly. That is great. Alex Neil and I have been included, but only at Kelly's request. Let me at this point thank the daily record for their very moving and robust campaign for Kelly and for all the cystic fibrosis sufferers in Scotland. Today they have highlighted Kelly's plea to the First Minister and I would encourage members to read her letter to the First Minister. They previously also covered comments from Gordon MacGregor, who is Kelly's consultant. I absolutely understand John Finnie's approach that says that clinicians need to be on board, but Gordon MacGregor told us and bravely spoke out about access to medicines. He had to stand by helplessly while, and I quote, a young man is dying in a hospital bed, while the drug, which will save his life, sits untouched along the corridor. When Alex Neil and I agree, there is something quite extraordinary happening, but we need the Scottish Government to get things moving, because the portfolio deal plus interim access now is what is needed. Let me finish with what Kelly Gallagher herself said. We should not have to fight for drugs that could save our lives. Some of us do not have time to wait. I would like to thank Maurice Corry for bringing this important date to debate to the chamber this evening. I remind members that I am a registered nurse and I am convener of the cross-party group for lung health, where this evening the CPG will be happening, and I am sure that it will be late starting, but cystified roses and orcambi are already on the agenda this evening for us to discuss. I inform members that I have sought permission from the Deputy Presiding Officer to exit the debate before final speakers, as I have this long-standing engagement to attend to. The opportunity to acknowledge the work of the cystic fibrosis trust needs to be in the forefront of that, because there has been some great work done to raise awareness of the issues. I acknowledge that there has been a lot of important work done to raise awareness. Cystic fibrosis affects 70,000 people across the world, 30,000 in the US and 900 people here in Scotland. That seems to be like a wee drop in the ocean compared to who is out there. For us, the ability to have access to the medications that can help to support people to have a healthier, more prolonged life out of hospital and support for the families needs to be considered. For us, there are other new disease-modifying drugs, including orcambi and other meds that will present soon. I will not go into the details about cystic fibrosis, but I know that it is not just a condition that affects the lungs, it is a condition that affects the pancreas as well and the ability to digest protein, carbs and fats. The amount of medications that people have to take every day—Miles Briggs mentioned up to 30 meds for some people—is a lot. There is a real commitment that patients need to demonstrate as far as adherence to therapy with the adjunct of the meds, the care, the physio and the exercise in order to manage their health. That is important to consider when we are looking after the patients. When I spoke to my sister, who is a respiratory nurse consultant, and her colleague, Stewart Little, she assured me that she was working really hard with all the patients and colleagues, and Phyllis said that the drugs that will be available, such as Cymdeco and orcambi, are increasing evidence to say that the research is progressing, the research is looking really good, and it is showing that those medications have a direct ability to support the way that protein is activated or pushed in order to make salt and water transfer across cell membranes. I think that when we are engaging with the health professionals and the clinical consultants, like Gordon MacGregor, when you hear the work that they are doing, I think that we obviously need to make sure that the clinical consultants are part of all of this process. When I hear about Alec Neill and Jackie Baillie, I speak about the way that the drugs are being managed in Ireland when we have a portfolio approach. My first thought was, how can we introduce a portfolio of drugs when some of them have not even been presented yet? I was concerned about the safety aspects of the introduction of a portfolio of meds, but I was assured when I met the vertex representatives that each drug would still be presented as an individual drug, even though a portfolio option is an option that could be approved. It would be worth considering the idea to have an individual approach right now as an interim approach while negotiations are taking place. I would be interested to know how the Scottish Government can support engagement with the drug company and the national NSS, as well as the Scottish Medicines Consortium. If we are looking at that as a year of young people, we are trying to look at promoting the extension of the young people's lives. My sister says that some people are living to age 51. In the year of young people, I think that it would be great for us to see more healthier out-of-hospital support for the lives of those folks in Scotland with cystic fibrosis. I thank Maurice Corry for bringing this debate to the chamber today. I want to recognise the work of the cystic fibrosis trust. I would also like to thank Robert Barker, who is a constituent of mine, for allowing me to tell his remarkable story of how he received or can be at what he thought would be near the end of his life. His father is in the gallery today and they are close family friends as it happens, so I have seen the progress of his improvement, but also the other side of it. He is in the gallery with many others today. Robert said, I started or can be in January 2017. Prior to this, my health had been deteriorating over the years due to my cystic fibrosis. I was having more regular stays in hospital, more chest infections and was now experiencing many other problems associated with the condition. He goes on to tell of the progressive challenges that he was facing. In 2016, I spent nearly 100 days of the year in hospital receiving strong IV drugs to treat the symptoms. On the few occasions that I was well enough to stay at home, I was hooked up to Oxygen 24-7 and could not even get around my own home without being severely out of breath. I could no longer look after my family, go to work, drive or walk anywhere. On top of that, I had to spend most of my day doing my daily treatments and taking nebulizers, doing physio and taking a long list of other medication. By the end of 2016, my weight had dropped to 50 kilograms, my lung function had dropped to a very serious 17 per cent, despite all the medication and care that I was receiving. I knew that I did not have long left and my wife and I would soon have to explain this to my six-year-old daughter. Fortunately, all that changed in January 2017 when I was prescribed or can be on compassionate grounds, as a lung transplant had not been an option for me. After three to four weeks on the drug, my lung function had risen above 30 per cent and I was able to come off Oxygen. After three months on the drug, it had climbed to 45 per cent and I was able to return to work full-time. By the summer, I felt great and I was able to take my family on holiday. I had my life back. A year on, from first taking or can be, my lung function is now nearly 60 per cent. My weight is up to 65 kilograms and I am able to do everything that I need to do physically. I have no chest infections, no hospital stays, no sick days from work. On top of that, my doctor has even reduced the several other drugs that I have been taking before I got sick. Or can be is an excellent drug. It may not be effective for everyone, but it should still be available to all CF sufferers who may benefit from it, as many of them are running out of time like I was. I am sure that everyone in this chamber will agree that Robert's story is both heart-rending and also filled with hope for the future that he can now spend time with his family, lead a normal life, which before or can be, would simply not have been possible. As Robert has stressed and many others have in this chamber and beyond, it may be expensive. As Robert has said, it does not work with all patients. However, the price of a drug should not prevent it from being available on the NHS. It is important to face the fact that this is about young children and how they are developing and needing a life, as Maurice Corry has highlighted. It is about preventing progressive deterioration. It is very disappointing that the response from the cabinet secretary's private secretary only denied a meeting with a very strong group of cross-party MSPs. I have never been to an evening meeting with MSPs that were so well attended and so passionate in my short six years in this Parliament. I, for one, wholeheartedly condone or can be's approval for all those who might have their life saved. I urge the chamber—I urge beyond the chamber, but particularly the cabinet secretary—and the minister who is here today to listen to calls across the chamber and beyond and to ensure that Robert's pleas and those of many others, for all can be, may be made available and it should be recognised. I now call Eileen Campbell to close the Government Minister. Seven minutes are there abouts, please. Thank you, Presiding Officer, and can I, like other members, first of all commend Maurice Corry for bringing forward this debate and speaking with a clear passion and authority and all the members who have contributed this afternoon. It is a timely debate as it precedes Cystic Fibrosus Week and I pay tribute to the Cystic Fibrosus Trust for their significant campaigning efforts across Scotland and beyond. It has also been a very difficult and emotional debate—difficult and emotional because who can fail to be moved by the lived experience and stories of people articulated so powerfully by MSPs across the chamber. Maurice Corry spoke about Mr and Mrs O'Neill's wee 15-month-old boy and their hopes and concerns for him as he grows up with Cystic Fibrosus. Similarly, Miles spoke about Freyrlanders and we also heard about remarkable young women, Hannah McDermid from John Finnie and Kelly Gallacher, who will be meeting the cabinet secretary soon. I am pleased to see Ralph Barker in the chamber, who I know as well, and to know how close Claudia is to Ralph and his boy. I again thank Claudia for what was quite a distressing thing for her to say. I am sorry, minister. I will have to. I did not want to intervene, but we must stop using first names throughout what you have been doing. I apologise, Presiding Officer. I would probably like everyone else to have got up in the motion of it and did not intend to disrespect the Parliament, but I wanted to make sure that I had on record and acknowledge Claudia Beamish's sincere contribution about somebody she knows and who she holds dearly to her and her family. The tributes and testimonies that we have heard this evening, Presiding Officer, highlight the debilitating impact that Cystic Fibrosus can have, the limitations that it puts on life and the need for us to think clearly how to help in the best way that we can. Much of that consideration on how to best help those living with Cystic Fibrosus was based on the availability of the appropriate medicines. The Government absolutely shares the chamber's desire to increase the availability of medicines that patients in Scotland need. That is why we sought to reform the systems in place and to introduce changes that are currently enabling us to get medicines to those who need it and we want to build on those positive changes. Between 2011 and 2013, the combined acceptance rate for orphan and cancer medicines was 48 per cent, but from 2014 to the end of 2017, under the new approach that we brought in, the SMC approved 79 per cent of those medicines. The SMC provides a clear and consistent process to consider medicines being appraised. From that appraisal, the SMC determines whether a medicine should be accepted for routine use within the NHS in Scotland or not, a decision currently and rightly independent of ministers and this Parliament. However, although those positive changes are all well and good, I know that what members tonight are interested in, and more importantly, those who have Cystic Fibrosus and who we have heard about this evening are interested in, is the fact that our can-bait is currently not routinely available on the NHS anywhere in the UK. To clarify the position that I think was suggested by Maurice Corry, NICE has not accepted this medicine. That is why last year the cabinet secretary strongly encouraged Vertex to enter into discussions with NHS national procurement, and we are pleased that that has happened. Those confidential talks are on-going, and we are hopeful that, as part of those discussions, Vertex will make its best offer on price and indicate that it will resubmit to the SMC as soon as possible. Many members have been contacted by constituents who are taking a close interest in the issue. In my case, the grandparents of a five-year-old girl who has Cystic Fibrosus. One of the main features of the debate today has been how we can reduce the amount of time between the drug given the green light, if it is indeed given the green light, and actually it being available for use. I would ask for an assurance that that will be addressed in terms of reducing that timescale as much as possible. I will go on to talk more about some of the improvements that we seek to make. Again, I think that that is why it is important that across the chamber we make a clear message to Vertex to make sure that they resubmit to the SMC as soon as possible. The cabinet secretary has also recently updated the health and support committee on further work that we are undertaking to deliver on the recommendations from Dr Brian Montgomery's review of access to new medicines in order to maximise the benefits that are available to patients in Scotland. In doing so, we are continuing to work very closely with our partner organisations, stakeholders, patient representatives and the pharmaceutical industry. I think that a call that was heard, I heard certainly from MSPs for us to do. The use of real-world evidence that captures the outcomes of medicines is also becoming an increasingly important element of our work and was one of a number of data-related recommendations in the review. That is particularly relevant in this debate, as so often there can be uncertainty and the robustness of the clinical evidence where the clinical trial data is limited due to small population sizes. We will look to build our use of data to support that. Anna Sarwar, for the intervention. Can she clarify by which date we will have a full implementation of the review findings? I will certainly undertake to ensure that that will get information to Anna Sarwar regarding some of the timetables around the implementation of the review, if he would find that useful. We will also continue to support access to new medicines through our new medicines fund. Officials are actively examining an improved negotiating function that seeks to ensure that NHS Scotland pays the same effective price for medicines as the rest of the UK. We are also recognising that the current appraisal pathway is less well suited to medicines for very rare conditions. We are seeking to include a wider assessment of lived experience, including quality of life issues. That is an important element, given the need to have that holistic picture of the way a condition impacts upon the life of the individual. However, despite the progress that I have outlined and the plans that we have in place to improve that further, that will provide some limited comfort to patients who need access to medicines that are not yet available. However, it is important to recognise that an SMC not recommended decision does not mean the end of the journey for Scottish patients. As members have spoken about now, there is a new process in place enabling doctors to request medicines on an individual patient basis for medicines such as or can be. The new peer-approved clinical system PACS Tier 2 process was introduced at the start of this month and replaces the old individual patient treatment requests. That introduces refreshed national decision-making criteria, standardised processes and a new national review panel to enhance consistency of decision-making right across the country. That new system requires doctors to now present an evidence-based case to demonstrate their opinion that their patient can achieve a clinical benefit comparable to or better than the population previously considered by SMC. Importantly, the guidance is explicit that the cost of the medicine must not form any part of the decision-making process and that arrangements should be only for exceptional cases. That is why we would again urge Vertex to do everything that they possibly can in their discussions with the NHS national procurement to find a solution at a fair price and to do so as quickly as possible in order for the SMC to consider a new submission to Alex Neil. Alex Neil, I thank the minister for taking an intervention. The crucial issue, and it seems to be the one that is preventing the real discussions between Vertex and NSS, is that Vertex is saying that the Scottish Government will not give approval to portfolio discussions because it is, quote, outside due process. Can we get clarification? Will the Scottish Government now, in the meeting next week between Vertex and the chief pharmaceutical officer, instruct the pharmaceutical officer to open discussions based on the portfolio discussion, because that seems to me the sensible thing to do and would open up the way for an interim arrangement? It is absolutely crucial that that happens. Just to clarify again that the confidential talks are on-going with Vertex and procurement officials. I know that he remembers during his office that there are always considerations that we have to make as a Government in order to seek to do the best that we can for the people that we serve. I know that the portfolio approach sounds appealing, but we must recognise that this approach involves the NHS potentially entering into agreements to purchase and licence medicines, the safety of which remains unproven. Despite some of the assurances, the risk is there and is real for our Government to have to consider. The approach also risks stopping the NHS getting access to future medicines that may be better and have better value. Again, I will seek to get our officials to look at this. However, I think that we need to recognise that the risk is there around purchasing and licence medicines and reducing the NHS getting access to future medicines that might be of better value. I think that we need to be mindful of those things. Again, we will ensure that I have taken a number of information interventions, Ms Bailey, so I will bring my marks to a conclusion. However, I will certainly make sure that you get the information, as I promised to Mr Neil, on the issue of portfolio discussions. It is not an easy debate to respond to. The stories and the testimonies that we have heard about tonight are powerful and they are real. I pay tribute to those individuals who have sought to campaign and make a difference because they are inspiring. However, I hope that it is also clear that this Government's determination to create a system that is fair and consistent, but where needed has within it the agility to respond to exceptional clinical need and has a greater cognisance of that lived experience. I think that those measures illustrate progress, but I certainly look forward to continuing to work with members across the chamber. I know that that was something that members called for this evening on that important issue. Where I have pledged to get back to members with additional information, I will do so as quickly as we can. Thank you and I commend members on their contributions. That concludes the debate and I close this meeting of Parliament.