argyrotsipi/train-dataset huggingface dataset:
NICE Appraisals: Rare Diseases Treatments — House of Commons, 2019-03-21
Topic: Health
Mary Elizabeth Twist (Labour, Centre-left): I beg to move, That this House believes that NICE appraisal processes do not properly address the medical treatment needs of people with rare diseases such as muscular dystrophy, phenylketonuria and cystic fibrosis; and calls on NICE to urgently review the appraisal process I thank my hon. Friend the Member for North Tyneside (Mary Glindon), who is chair of the all-party group on muscular dystrophy, and the hon. Member for Strangford (Jim Shannon), who is chair of the all-party group on cystic fibrosis, for their help in securing this debate My constituent Archie McGovern is 12 years old. He is bright and lively, and full of beans now, but it has not always been like that way because Archie has PKU— phenylketonuria. Putting it simply, PKU is a genetic condition that means Archie and others are unable to handle phenylalanine, which is found in protein—so no meat, no fish and no dairy products. There is a whole range of other things that we would not think had protein in them: the list is endless. On top of that, he has to take a protein substitute drink—if we can call it that, as it is very unpleasant—to keep the balance right At present PKU is not curable, and a hugely restrictive diet is the only way of controlling the condition throughout childhood and adult life. The condition is picked up by the pinprick test at birth, and for those identified as having PKU that is the start of a difficult lifetime of dietary control. For children that is especially difficult, but it is also very important because failure to control the condition can lead to serious neurological problems That is how it was for Archie until quite recently, but there is a treatment that can help to control PKU. It is called Kuvan, and although it was licensed 10 years ago and is widely available in many countries in Europe, and further afield, it is not available to patients in the UK. Not everyone with PKU responds to Kuvan, but it is believed that more than 20% of people will respond well and see a significant improvement in their life.
NICE Appraisals: Rare Diseases Treatments — House of Commons, 2019-03-21
Topic: Health
Mary Elizabeth Twist (Labour, Centre-left): Like the hon. Gentleman, I took part in the PKU diet for a day challenge. It was indeed very restrictive, even though I knew it was only for one day Archie is one of those who responds well to Kuvan, and last year, his parents took the difficult decision to pay to buy him the drug. That took a great deal of soul searching on their behalf, and it cost them dear—£25,000 a year, even though Archie is currently on just half a dose. They know that for many people with PKU, or for parents with more than one child who has PKU, it is simply not possible to self-fund, and they are acutely conscious of the unfairness of that. The difference that Kuvan has made to Archie is real and significant: increased concentration and energy, so that he can make the best of his education; no recurring mouth ulcers, which were a real problem; and a chance substantially to increase the number of exchanges he can have, and eat a more normal diet. For Archie, Kuvan has made a real difference Archie’s case, and those of many others in other constituencies, prompted us to form the all-party group on phenylketonuria, and to consider how Kuvan could be made available to those who would benefit from it. Nearly 10 years after Kuvan was approved, that treatment does not seem to have been an appraised, and in England it is still not available on the NHS. Since we set up the group, there has been a move for Kuvan to be appraised by NICE, and discussions have been held with NHS England about a managed access agreement. We were disappointed to learn just before Christmas that no agreement had been reached on that managed access agreement, and that the NICE appraisal was to be via the single technology appraisal route, and not the highly specialised technologies programme. I understand that following a legal challenge, the Department of Health and Social Care is again considering the appropriate appraisal route, and the all-party group has made representations on that point When talking about the NICE appraisal system it is easy to get lost in technical details—QALYs, and everything else, that means nothing to people on the street—but what really concerns people is whether or not there is a fair chance that the drugs they need will be fairly assessed and made available on the NHS.
NICE Appraisals: Rare Diseases Treatments — House of Commons, 2019-03-21
Topic: Health
Thelma Doris Walker (Labour, Centre-left): I thank my hon. Friend for securing this debate. One of my constituents suffers from Batten disease and is receiving cerliponase alfa on compassionate grounds. However, NICE will not now recommend that treatment, which in part is due to cost. Does my hon. Friend share my view that allowing patients on to clinical trials when there is no funding to deliver the treatment, places them and their families in an incredibly difficult and uncertain position regarding their future?
NICE Appraisals: Rare Diseases Treatments — House of Commons, 2019-03-21
Topic: Health
Mark Richard Tami (Labour, Centre-left): I have certainly found that NICE sometimes says that the pool of people is not big enough to evaluate, but the clue is in the title: these are rare diseases. NICE cannot carry on doing that, particularly in cases where it is clear that the drug has a really positive effect.
NICE Appraisals: Rare Diseases Treatments — House of Commons, 2019-03-21
Topic: Health
Mary Theresa Glindon (Labour, Centre-left): It is an honour to follow the hon. Member for Reigate (Crispin Blunt) I thank the Backbench Business Committee for agreeing to the debate. I also congratulate my hon. Friend the Member for Blaydon (Liz Twist), who is, as she said, my fellow member of the all-party parliamentary group for muscular dystrophy. She made a lucid and compelling case for the review of the NICE appraisal process I have had the honour of chairing the APPG for several years. It works closely with our secretariat, Muscular Dystrophy UK, and with patients and carers, on a number of issues that affect the lives of those with muscular dystrophy and other neuromuscular conditions. Perhaps one of the most important issues that we consider is the ability of patients to access treatments for their conditions For more than a year, access to the drug Spinraza, manufactured by the company Biogen, has been the focus of the APPG’s concerns about, and frustrations with, the NICE appraisal process. Spinraza is the first and only treatment for patients with spinal muscular atrophy, a rare inherited neuromuscular condition that leads to the gradual loss of the ability to walk, move, breathe and swallow. It currently affects about 2,000 adults and children in the UK. There are several types of SMA, with type 1 being the most severe, usually resulting in the death of infants before they reach their second birthday. However, clinical trials of Spinraza have had amazing results for many of the patients who have tried it. It has been so positive for children with type 1 that over two years ago Biogen opened its global expanded access programme to provide the drug free to type 1 patients Spinraza is currently available across 24 European countries and in the US, but for patients in this country access to the drug is being held up by lengthy delays to the NICE appraisal process.
NICE Appraisals: Rare Diseases Treatments — House of Commons, 2019-03-21
Topic: Health
Lyn Carol Brown (Labour, Centre-left): The hon. Gentleman is absolutely right. This is a political issue—what we are discussing today is political. It is about which of our constituents get access to which medicines, and when; who our public healthcare service helps with our public money; and who we allow to die without help Members on both sides of the Chamber have recently urged the Government to use their Crown use licensing powers in the case of Orkambi. Those powers can get around medicine patents when pharmaceutical companies are simply refusing to deal honestly with the NHS, and they are an option. There are always options for the Government if they wish to use them, but they seem to be content with voicing frustration. They do not do anything—they will not even threaten to do anything that might help. If the Patents Act 2004 is not working, as Ministers have said, we need to do something to replace it. Maryam’s family and others want action now. They need Spinraza now; when will they get it?
NICE Appraisals: Rare Diseases Treatments — House of Commons, 2019-03-21
Topic: Health
Sharon Hodgson (Labour, Centre-left): Exactly Behind profit forecasts are thousands of people and families who need access to life-saving drugs, and they simply cannot wait any longer. We must not put businesses before patients. Because of the NICE appraisal process, patients and their families are being left in an awful limbo. The processes can be long-winded, confusing and difficult to navigate. Some medicines can undergo multiple assessments while others are not assessed at all, and that creates an unpredictable and unattractive system. As a result, patients are left in the dark about when, or if, they will have access to innovative treatments for their conditions When a drug is being appraised, patients live in hope that this time it will be approved for use by NICE—as in Maryam’s case, which was described so powerfully by my hon. Friend the Member for West Ham (Lyn Brown)—but they are almost always left to feel disappointed and helpless. Patients and their families must be involved in the processes, and the processes must be transparent The wait for access to drugs is excruciating, especially when the drug is available in nearby countries, or even—as we have heard—in Scotland. Spinraza is available to patients in Scotland, but not to those in England. My hon. Friend the Member for West Ham spoke passionately on behalf of her constituents and their seven-month-old baby Maryam. This sounds blunt, but she is dying, because she has been denied access to medication that could extend and enhance her life The pain and anguish that the parents of a critically ill child must feel when they are told that there is medicine available that will help but it is not available for their child are unimaginable. Knowing that if your child lived a few hundred miles away, in Scotland or perhaps somewhere in Europe, the drug would be available is heartbreaking and infuriating. Patients in England should not be left behind. We should be working to find ways to get these medicines to the patients who need them, on the NHS. I hope that the Minister will consider the motion seriously, for the sake of patients with rare diseases and their families. They cannot be left behind any longer: they must have access to these life-saving drugs now.
NICE Appraisals: Rare Diseases Treatments — House of Commons, 2019-03-21
Topic: Health
Mary Elizabeth Twist (Labour, Centre-left): I hope that hon. Members will forgive me if I do not list them all, but I want to respond to the Minister. First of all, Minister, it is not easy for us on the Back Benches to criticise and lobby. It is really difficult for us, because these are our constituents. They are real people who have real conditions. We have tried to be constructive in the debate and said that we have identified issues around the NICE appraisal system that we think need to be addressed urgently. I notice that he mentioned the review and said that our concerns would be drawn to its attention, but will he ensure that there is dialogue and input before the review takes place to ensure that it is not just technical, but addresses the concerns that we have raised?
NHS Pension Scheme — House of Commons, 2019-05-21
Topic: Health
Questions: What assessment the Government have made of the effect of the annual tapered allowance on the (a) recruitment and (b) retention of doctors in (i) hospitals, (ii) primary care and (iii) the armed forces.
Ruth Lorraine Jones (Labour, Centre-left): A number of hospital consultants who live in my constituency have written to me to express their concern at the implications of the tapered annual allowance. With GP numbers continuing to fall, ongoing shortages across consultant specialties and armed forces doctors currently experiencing a 23% workforce shortfall, how is the Chancellor going to help doctors and patients by resolving the unintended consequences caused by the annual tapered allowance and lifetime annual allowance that are leading to doctors who would otherwise be happily continuing to work having to leave the profession to avoid disproportionate and unfair tax bills?
Topical Questions — House of Commons, 2019-05-21
Topic: Defense
Questions: The Government have an excellent track record in tackling climate change, notwithstanding what Opposition Members said earlier, and I applaud their commitment to doing more. Will the Chancellor consider introducing incentives in the comprehensive spending review to encourage occupiers and owners of industrial and agricultural buildings to improve their energy efficiency?; We are the last generation that can act to prevent irreversible harm from being done to our planet, so we need to act with urgency. Will the Chancellor bring forward the tax on the use of virgin plastic to boost recycling and incentivise plastic-free options? We do not have three years to wait.; Out- sourced low-paid workers in both the Foreign and Commonwealth Office and the Department for Business, Energy and Industrial Strategy are on strike because their employers, Interserve, ISS and Aramark, are refusing to pay the London living wage, and in some cases have not paid staff wages for weeks. Will the Chancellor stand up for those employees, and do whatever he can to help Departments bring outsourced contracts back in-house?; According to the Sunday Times rich list the 10 wealthiest people in the country have a combined wealth of £143 billion; half of them live in my constituency. Meanwhile, according to the Child Poverty Action Group, across Kensington and Chelsea 8,500 children—37%—live in poverty, and in one ward nearly half do. Inequality in my constituency is getting worse. When will the Chancellor reverse this trickle-up economy by chasing tax-dodging plutocrats who are stealing food from the mouths of our children, many of them from working poor families?; The Government’s Social Mobility Commission recently stated that social mobility in the UK has stagnated over the last four years. One of its key recommendations is that the Government should significantly increase funding for further education in the upcoming spending review. Given that Bradford College plans to cut 131 of its staff, will the Chancellor listen to his Government’s own commission, boost FE funding and give the most disadvantaged students the opportunities they deserve?; I have listened in astonishment to the answers from the Financial Secretary and the Chancellor about the loan charges. Given that the Financial Secretary admitted that the Government were pursuing six companies on a legal basis over this—they are admitting they are the companies responsible—why do they pursue constituents like mine, many of whom were obliged to undertake these tax changes in order to get work?
Luke Pollard (Labour, Centre-left): Wherever the Royal Navy deploys, the Royal Fleet Auxiliary deploys alongside it, but instead of getting the 2.9% pay increase that the sailors got, RFA personnel got a below-inflation 1.5% increase. As the total cost of the difference is only £400,000, will the Government think again and give our brave RFA crews the pay rise they deserve?
Topical Questions — House of Commons, 2019-05-21
Topic: Health
Questions: The Government have an excellent track record in tackling climate change, notwithstanding what Opposition Members said earlier, and I applaud their commitment to doing more. Will the Chancellor consider introducing incentives in the comprehensive spending review to encourage occupiers and owners of industrial and agricultural buildings to improve their energy efficiency?; We are the last generation that can act to prevent irreversible harm from being done to our planet, so we need to act with urgency. Will the Chancellor bring forward the tax on the use of virgin plastic to boost recycling and incentivise plastic-free options? We do not have three years to wait.; Out- sourced low-paid workers in both the Foreign and Commonwealth Office and the Department for Business, Energy and Industrial Strategy are on strike because their employers, Interserve, ISS and Aramark, are refusing to pay the London living wage, and in some cases have not paid staff wages for weeks. Will the Chancellor stand up for those employees, and do whatever he can to help Departments bring outsourced contracts back in-house?; According to the Sunday Times rich list the 10 wealthiest people in the country have a combined wealth of £143 billion; half of them live in my constituency. Meanwhile, according to the Child Poverty Action Group, across Kensington and Chelsea 8,500 children—37%—live in poverty, and in one ward nearly half do. Inequality in my constituency is getting worse. When will the Chancellor reverse this trickle-up economy by chasing tax-dodging plutocrats who are stealing food from the mouths of our children, many of them from working poor families?; The Government’s Social Mobility Commission recently stated that social mobility in the UK has stagnated over the last four years. One of its key recommendations is that the Government should significantly increase funding for further education in the upcoming spending review. Given that Bradford College plans to cut 131 of its staff, will the Chancellor listen to his Government’s own commission, boost FE funding and give the most disadvantaged students the opportunities they deserve?; I have listened in astonishment to the answers from the Financial Secretary and the Chancellor about the loan charges. Given that the Financial Secretary admitted that the Government were pursuing six companies on a legal basis over this—they are admitting they are the companies responsible—why do they pursue constituents like mine, many of whom were obliged to undertake these tax changes in order to get work?
Diana Ruth Johnson (Labour, Centre-left): Has the time not come for the Chancellor to heed the call from the Westminster leaders of seven Opposition parties to fund proper compensation for those infected and affected by the NHS blood scandal across the whole United Kingdom?
British Steel — House of Commons, 2019-05-21
Topic: Defense
Nicklaus Thomas-Symonds (Labour, Centre-left): The forthcoming Government project to build the Royal Navy fleet solid support ships will clearly use enormous amounts of steel. Quite simply, why can the Minister not ensure that those ships are built of UK steel?
Parliamentary Buildings (Restoration and Renewal) Bill — House of Commons, 2019-05-21
Topic: Defense
Margaret Olivia Hillier (Labour, Centre-left): I think we are all willing to decant, so that is good news. I thank the right hon. Lady for her chairmanship of the Committee, whose work was concluded with dispatch but thoughtfulness. She will be glad to know, hot off the press, that the Public Accounts Committee has received a letter from the permanent secretary at the Ministry of Defence that should speed up our departure because we have now, I hope, resolved the issue of the MOD car park.
Parliamentary Buildings (Restoration and Renewal) Bill — House of Commons, 2019-05-21
Topic: Defense
Lindsay Harvey Hoyle (Labour, Centre-left): The right hon. Gentleman has raised a very important matter and, absolutely, the veterans of this country need to know what is going on. Promises have been made to this House, and I do not think it is acceptable that no written ministerial statement has been laid. However, it has now been raised, and I am sure people will look into this as a matter of urgency and find out where this written ministerial statement is. I hope that it will soon be available for all Members—I am hoping it is only seconds or minutes away—because I too do not understand why, at this time of day, it has not been laid for Members to take it on board. I am sure this will now be looked at as a matter of urgency.
Parliamentary Buildings (Restoration and Renewal) Bill — House of Commons, 2019-05-21
Topic: Defense
Lindsay Harvey Hoyle (Labour, Centre-left): Before I call the Minister, I want to make an announcement. There was a point of order about the written statement from the Ministry of Defence. It is not online, but copies are now available for Members to read.
Christmas Island Nuclear Testing: Compensation — House of Commons, 2019-05-21
Topic: Defense
Kevan David Jones (Labour, Centre-left): The hon. Lady is making a very good speech. When I was the Under-Secretary of State for Defence in 2009, a settlement proposal was made to the test veterans’ lawyers. Having reviewed the file recently, I can confirm that the barrister did pass that over, but for some reason the very generous settlement offer was refused.
Exiting the European Union (Food and Agriculture) — House of Commons, 2019-03-19
Topic: Health
Sharon Hodgson (Labour, Centre-left): I absolutely agree. My hon. Friend makes a good point, and I discussed with the Government and Opposition Whips where responsibility for these SIs fell. There is so much crossover between food and health policy, and we are doing the best we can with the hand we have been dealt, but we should probably look more into this issue going forward.
Male Suicide — House of Commons, 2019-06-18
Topic: Health
Conor Patrick McGinn (Labour, Centre-left): It devastates me to have to tell the House that St Helens has the highest rate of suicide in the country, and three quarters of those who take their own lives are men. We know that working class men in deprived areas are 10 times more at risk than those in the most affluent areas, so will the Minister recognise class and community, and poverty and place, as key factors in male suicide and its causes? Will she come to St Helens to see and support the vital work that is being done to prevent the tragic crisis of suicide that is affecting more families in my community?
Mental Health Services — House of Commons, 2019-06-18
Topic: Health
Kerry Gillian McCarthy (Labour, Centre-left): In Manchester on Saturday, people were giving away free "Unknown Pleasures" t-shirts, partly to mark the 40th anniversary of one of the greatest albums ever made. But, as anyone who knows the history of Joy Division will know, there is also the important related issue of male suicide and people were being encouraged to donate to charities, particularly those that work with young men at risk of suicide. I was sent one of the t-shirts, Mr Speaker, but I thought you might rule it out of order if I wore it. These charities obviously do great work, but they are trying to fill real gaps in the system. How can we ensure, when we consider long-term health plans and long-term mental health services, that there are not gaps that people fall between?
NHS: Changing Places — House of Commons, 2019-06-18
Topic: Health
Nicholas Dakin (Labour, Centre-left): There are only about 40 Changing Places facilities in the NHS at the moment. I congratulate the Minister on the work she is doing on this, but will she continue to work with campaigners like Lorna Fillingham in my constituency to make sure that it not only happens quickly and on a timely basis but that we build on it in the future?