(3 years, 10 months ago)
Commons ChamberThe world-beating test and trace system set up to control covid-19 has been an expensive failure. Covid-19 is having a devastating effect on lives and livelihoods at the speed we saw back in April, especially in less affluent areas and communities, such as Liverpool city region. The Government have difficulty admitting that, when the system has cost £12 billion, but recognise it and act they must, as lives are at stake.
For test and trace to work, the Government must learn lessons from the experiences and outcomes to date. Local knowledge is the key to success. When a business is looking to expand into new markets, local expertise is hired to help. This situation is no different. One centralised, outsourced system was destined to fail. For months, many people have called on the Government to support local authorities and public health and expand their role. Their teams have proven to be successful at controlling the outbreaks, once they have got over the business of testing and the lack of PPE in care homes in those areas.
National Test and Trace teams contact positive cases by phoning and leaving a message, but many do not get back to them. Sometimes, they pass those failures on to local government, and local government goes out, knocks on doors and gets responses, and that has been proven. These teams have invaluable knowledge of the people and places where they are working year in, year out. Higher contact tracing rates lead to reduced covid-19 spread. It is the only way to get it under control. Local authorities do not have the capacity to do it all themselves—they are already beyond stretched. One outsourcing company subcontracted 28 different companies with no knowledge or experience to succeed, and that has proven to be a failure.
Often, the solution is simple. We currently have too much of a disconnect between local and national teams. By the time the subcontractors contact local teams to help, days have passed with covid-19 on legs, spreading. Effective information-sharing leads to faster contact tracing. Redeploying the national pool of contact tracers directly with local teams would help that. That is how the country can get a test and trace system working, which is what we all want.
Local authorities and their public health teams should be given the lead on test and trace and the resource to do so. Adequate funding is necessary so that they can expand their teams, but it takes time to recruit, and that is why I urge that the 25,000 tracers employed by the private sector are redeployed somehow into local teams.
I am sorry, Marie, but we have to leave it there. I call Margaret Greenwood.
(3 years, 10 months ago)
Commons ChamberThese decisions were taken on false data owing to the Excel error. The situation in Knowsley and St Helens was worse than first thought. The infection rate is almost four times higher than that in Greater Manchester when restrictions were introduced there. I fear that, once again, the Government have acted too late.
There are bigger consequences of this mistake. For the past week, thousands of people across the country should have been told to self-isolate. Instead, they have been unwittingly spreading the virus. That has put lives at risk and could lead to many more families losing their loved ones. For our £12 billion world-beating test and trace system the public deserve better. Even before this error, 35% of contacts had not been traced in Knowsley. The Government have had months to fix this. Infection rates are back to the levels we saw in April but, with the serial incompetence that we have seen, I am afraid this is hardly a surprise. Local authorities and health officials have proved far more effective at contact tracing than private companies. If the Government had trusted them and invested in them in the first place, we would not be in the situation we are in now.
Like many colleagues, I have received emails asking me to oppose the restrictions. For me, health will always take priority over the economy. I understand that we need a strong economy to fund our national health service but the best way to repair the economy is to get the virus under control. The UK has had the highest number of covid-19-related deaths in Europe followed by the worst economic crisis. That is in stark contrast to Germany where many fewer deaths have led to a much better performing economy. This is no coincidence.
There is no trade-off between the economy and health. To improve the economy, the Government must get the virus under control. To get the virus under control, the Government must have a working contact tracing programme.
This announcement came with the promise of £7 million pounds for the councils affected, working out at less than £800,000 for each authority. For the size of the task in hand that is simply not good enough. These are the councils that were originally promised that they would be reimbursed with whatever it takes to keep communities safe. Hardly is the word the bond.
We are not yet out of this crisis. We may not even be halfway through. The reality is that even our top scientific and medical experts do not know how bad this could get. With this in mind, I urge the Government to share the scientific and medical evidence with local communities so that they may understand on what basis a decision has been made and for Government always to err on the side of caution to protect lives. It is better to be safe than sorry.
(4 years, 2 months ago)
Commons ChamberI thank the Minister for providing us with sight of her letter to the Minister for Asia. As she committed herself to doing in Committee, she communicated it to all Committee members. I sincerely thank her for that.
Amendment 19 would empower the appropriate authority to make provisions for the process of developing or manufacturing medicines in relation to the origin and treatment of human organs. This is necessary because of the actions by the Chinese Government in Beijing. The China tribunal, headed up by Sir Geoffrey Nice QC, launched the first independent legal analysis of all evidence relating to organ harvesting in China and found beyond reasonable doubt that forcible organ harvesting was taking place. China was invited to provide evidence to this tribunal but failed to do so.
Further, a study by the medical journal BMJ Open has raised ethical issues on over 400 Chinese medical studies, and there is clear evidence that China is abusing the human rights, including the right to life, of Uyghurs, practitioners of Falun Gong, conscientious objectors and political prisoners. There is no reason to believe that China is not also experimenting on such prisoners without consent and then harvesting organs to examine the results of such experiments, and we must protect the UK health system from being morally compromised by this.
The Minister stated in Committee that my amendment was not required as regulations are already in place under the Human Tissue (Quality and Safety for Human Application) Regulations 2007 and the Human Tissue Act 2004. There are codes of practice in respect of the 2007 regulations, but section 1(4) of the 2004 Act explains that subsection (1) does not apply for a body to which subsections (5) or (6) apply:
“Subsections (1) to (3) do not apply to an activity of a kind mentioned there if it is done in relation to…a body to which subsection (5) applies”—
which includes a human body that has been imported—
“or…relevant material to which subsection (6) applies”,
and that applies to “relevant material” if has been imported. “Relevant material” means material consisting of human cells, so imported human tissue does not require appropriate consent.
The importing of human body tissue for medical research does not require any consent or traceability—it is only advised, not required—meaning that human tissue from countries like China can legally be imported to the UK for the purpose of medical research without traceability, documentation or consent. Imported human body tissue for use in medicines requires traceability from donor to recipient. Although technically consent documentation does not legally require consent, in reality it would be difficult to demonstrate donor selection requirements without it.
Without my amendment, we have no assurance that harvested organs cannot find their way into our national health service. Although the legislation and regulations provide guidance, it is just that: guidance. Why should we not want to make it clear that harvested organs will not find their way into this country? International checks on the system are failing, with the World Health Organisation’s assessment of the Chinese organ transplant system actually being one of self-assessment, as stated by the WHO to the Foreign and Commonwealth Office. Thus, the regime breaking the ethical standards is also assessing whether it meets them.
The British Medical Association has called on the Government
“to reconsider its position on this issue in light of the findings of the Tribunal”.
My amendment would empower the Government to do just that and close the hole in the existing legislation. It aims not to shut down the trade in medicines between the United Kingdom and China, but to ensure that it is ethical. It would not force the Government to implement the regulations now; it would merely empower them and the relevant authorities to take the steps necessary to regulate on this issue, when and if they are prepared to do so.
I do not intend to push my amendment to a Division today, although frankly, I should not have to: the moral and practical case is as clear as day, and the Government should accept it. It seems that they will not do so at this stage, but they should when the Bill is debated in the other place. I want to make it abundantly clear that I will not let this matter lie. A growing group of cross-party parliamentarians, both here and in the other place, are determined to stop this from happening. We now need the Government to do their bit. I will leave it there.
It is a pleasure to be able to speak on this issue. The Minister knows how pleased I am to see her in her position. I have always followed her progress, and she has done very well. I am pleased to note how capably she responds to the issues that are raised in the debate. What a pleasure it is, too, to see the shadow Minister, the hon. Member for Nottingham North (Alex Norris), in his place.
(4 years, 2 months ago)
Public Bill CommitteesIt feels to a certain extent as if we are having this conversation the wrong way round. I have not been in Parliament very long, but I have been on quite a few Bill Committees—I am sad like that. Normally the Opposition try to put words in a Bill and the Government say, “We agree with the principle; it just does not need to be on the face of the Bill.” It feels as if on the attractiveness point we are doing that the other way round. I completely accept that there is no nefarious aim, but I personally think that it is superfluous. We can perhaps pursue that at a later stage.
I agree, too, that those things are not necessarily in conflict but, as my hon. Friend the Member for Bethnal Green and Bow said, I can see circumstances in which they might be, in the sense of pressure to drop our standards in order to get certain investments. For the Opposition, that has been a fear throughout, and we can certainly see it in this place, which is why we would like to enshrine a provision in the Bill.
Finally, I accept the point that patient safety must come first, but I do not think that the Bill—although it was written with lots of lists in it—creates hierarchies in those lists. It does not specify what falls down, that A is better than B which is better than C which is better than D, so that does not quite cover the point. I will not press the amendments to a vote, but with permission, we might come back to them later. I beg to ask leave to withdraw the amendment.
Amendment, by leave, withdrawn.
Clause 1 ordered to stand part of the Bill.
Clause 2
Manufacture, marketing and supply
I beg to move amendment 1, in clause 2, page 2, line 23, at end, insert—
“(o) the origin and treatment of human organs used in the process of developing or manufacturing medicines”.
This amendment empowers the appropriate authority to make provisions on the process of developing or manufacturing medicines in relation to the origin and treatment of human organs.
It is a pleasure to serve in Committee under your chairmanship, Mr Davies.
The purpose of the amendment is to empower the Government to make regulations providing for the treatment of human organs in the development of the manufacturing of medicines. This is necessary due to the actions of the Chinese Government in Beijing.
The China tribunal launched the first independent legal analysis of all evidence related to organ harvesting in China. The tribunal is headed by Sir Geoffrey Nice, QC, who served as the lead prosecutor of Slobodan Milošević. It stated:
“Forced organ harvesting has been committed for years throughout China on a significant scale”.
I have forwarded copies of this document to all members of the Committee. I am trying to be as transparent as possible—this is not about trying to kid or trick on our commitment. I am sure that people in the country would agree. All members have copies, which I sent out over the weekend. I have given a short version of what the independent public tribunal said. Clearly, on the second page, it stated:
“Forced organ harvesting has been committed for years throughout China on a significant scale and that Falun Gong practitioners have been one—and probably the main—source of organ supply. The concerted persecution and medical testing of the Uyghurs is more recent, and it may be that evidence of forced organ harvesting of this group may emerge in due course.
The Tribunal has had no evidence that the significant infrastructure associated with China’s transplantation industry has been dismantled and absent a satisfactory explanation as to the source of readily available organs concludes that forced organ harvesting continues till today.”
There is therefore clear evidence that China is conducting medical testing on organs forcibly harvested from Uighurs, the Falun Gong, conscientious objectors and political prisoners. Indeed, a study by medical journal The BMJ raised ethical issues about more than 400 Chinese medical studies. The harvesting of organs from those people not only is an abhorrent act in and of itself, but often involves forced brain damage and vegetation of the person involved, of course leading to their eventual death.
Those papers that I sent to all Committee members refer to a debate in the House of Lords on 2 March, which raised the issue of the tribunal on forced organ harvesting in China. On that harvesting, Lord Alton commented that the
“organised butchery of living people compares to ‘the worst atrocities committed in conflicts of the 20th century’, including the gassing of Jews by the Nazis and the Khmer Rouge massacres in Cambodia”.
The UK Foreign and Commonwealth Office informed the UK House of Lords that the World Health Organisation, which previously advised that China’s transplant system is ethical, responded:
“The evidence that it uses is based on the self-assessment made by the country that is a signatory, and in this case that is China.”
That comes from the UK Foreign and Commonwealth Office. The British Medical Association calls on the Government to reconsider their position on this issue in the light of the findings of the tribunal, and to use their influence with the international community to ensure that a full, proper investigation takes place.
We therefore need to take the necessary steps to protect the United Kingdom’s healthcare system from being morally compromised through an injection of Chinese medicines developed in a way that breaches some of the most basic human rights. This amendment does not aim to shut down trade in medicines between the United Kingdom and China. Leaps in progress made for preserving human rights should be readily shared and traded across the globe. However, these leaps in progress should not come at the expense of innocent human lives, and we must do all that we can to ensure that this practice cannot be profited from.
By passing this amendment, the Government will be empowered to make regulations ensuring that medicines supplied in the United Kingdom meet basic human rights standards with regard to how organs have been obtained in their development and manufacture. Any medicines that meet these standards and any other standards set by the Government will, of course, be welcomed into the United Kingdom.
This amendment does not force the Government to implement these regulations now; it merely empowers the Government and the relevant authorities to take the necessary steps to regulate around this issue when they are prepared to do so. I can therefore see no moral or practical reason why members of the Committee would not wish to see this amendment added to this Bill, and urge the Committee to consider it.
My hon. Friend has made a persuasive and powerful case, as she did on Second Reading. From the debate on Second Reading, I took away the phrase that this gives us a chance to “strike a blow” against this heinous industry. I certainly support her in that regard.
I am sorry about this—really sorry—because I understood that being a Minister was about co-operation, patience and morals. I do not disbelieve what the Minister says. However, there has been a public and independent inquiry, which found beyond all reasonable doubt. Those running the inquiry were people of stature and good regard, with a history of working for human rights.
I cannot withdraw the amendment. I ask that, at the very least, the Committee considers meeting Sir Geoffrey Nice and a Chinese surgeon who was forced to carry out the removal of organs in China, and who is now a taxi driver in London. They could meet somehow—I am sure we could do it on Teams or something like that. Before we get to Report, I urge the Committee to agree to such a meeting or to listen to and read the evidence. I cannot in all conscience accept that the learned people who sat on the China tribunal would have not researched and challenged—people such as Lord Alton, Lord Hunt and others in the House of Lords. Indeed, many hon. Members spoke about China’s treatment of Uighur Muslims in a Westminster Hall debate that was led by a Conservative Member on 11 March. I am sure some of them would have looked and questioned.
I will not and cannot withdraw the amendment, but I urge the Committee to have neutrality and meet the relevant people so that we can check. I would certainly have to check with learned people before I can begin to consider withdrawing the amendment. I cannot accept that the learned people who have engaged with this issue for so long—we have worked on it for nearly two years and, coincidentally, the Bill came along. I have tried to get a private Member’s Bill but have not succeeded. I have tried every nook and cranny to do anything I can to stop this practice. I do not want to risk our health service or our country’s reputation, which could be tarnished by being involved. I have dear friends who are Chinese, but I do not trust the Chinese Government in any way. I urge the Minister please at least to let us meet and consider this issue before Report. I have not sat on a Bill Committee before, Mr Davies, so I am not sure of procedure and, as you know, I am profoundly deaf. I urge the Minister please not to throw out amendment 1 without us doing that and rechecking every nook and cranny.
I understand the hon. Member’s passion for this area. As she said, she has tried to find every nook and cranny. I gently repeat that the Bill is not the right place for amendment 1, but I commit to writing to my Foreign and Commonwealth Office counterpart on this point and to exploring it further, if that would be of assistance to her. However, I say again that the Bill is not the vehicle for the amendment and I ask her to withdraw it.
The hon. Member for St Helens South and Whiston said she was inexperienced in Bill Committees. I can happily tell her that at this moment in time she is in charge and it is entirely down to her whether she wishes to press her amendment to a Division or to withdraw it. It is for her to indicate which of those options she would prefer.
(4 years, 5 months ago)
Commons ChamberIt is a pleasure and a privilege to follow the hon. Members for Central Ayrshire (Dr Whitford) and for Bosworth (Dr Evans). I agree with everything they said.
I welcome this Bill and the steps that will be taken to improve patient safety and the availability of medicines and medical devices. I will keep my comments short today, as I hope to be further involved in the Bill’s later stages. There are some key points to make on Second Reading, however, as the Bill has the potential to affect so many people’s lives, both domestically and abroad.
As we all know, patient safety is vital and should not be compromised. Sadly, we have seen patient safety standards disregarded in the cases of valproate, Primodos and surgical mesh, which shows a clear need for the legislation in this area to be tightened. The experience of those patients shows the life-changing effect that medicines and medical devices can have on people if they are not thoroughly tested—a medical intervention designed to drastically improve a patient’s quality of life can, instead, leave them in a more dire situation.
We not only need to be aware of, and have concern for, patients in our own nation when we look at the medicines entering our national health service; we must also ensure that due care is given to the patients involved in the development of those medicines. We cannot sacrifice the health, rights and dignity of other human beings just to gain medicines for people in our country.
When we look to China, for example, we see that the evidence supplied by the independent China tribunal, which was released in full yesterday, overwhelmingly shows that organs have been harvested from unwilling political prisoners and prisoners of conscience such as members of Falun Gong and the Uyghur Muslims.
It is important that is put on the record. There was a question in the other place today on this very issue of organ harvesting. The hon. Lady and I, like others in this House, recognise that commercial organ harvesting is happening in China. Is it not important for our Government, and for all responsible Ministers, to contact the Chinese authorities directly to ensure that organ harvesting does not take place? It is not just the Uyghur Muslims but Christians and those of other ethnic minorities, too. They are all being discriminated against for being alive.
The China tribunal report was issued yesterday, and it clearly states that organ harvesting is being done in a commercial, business-like manner. It is absolutely horrendous. People are being taken into prison for nothing, and their DNA is taken. A doctor who now drives an Uber taxi in London was forced to remove the liver and kidneys of a Uyghur Muslim while he was still living, which is horrendous. I and a number of others intend to get this resolved. We must ensure that medicines entering the United Kingdom have not been tested on or developed using those organs or any other human rights abuses, and I am sure the Government are aligned with me on this issue.
If appointed to the Public Bill Committee, I hope to move an amendment on this issue, on which there is cross-party support in both Houses. In the light of this week’s stories in The Guardian and The Daily Telegraph about major companies profiting from Uyghur slave labour, it seems there is no indignity, no suffering, that those poor people are not forced to endure. The trade in their organs must surely be one of the most wicked crimes against humanity of the 21st century. This Bill will provide the House with one small opportunity to strike a blow on their behalf.
Domestically, we must ensure that regulators are properly equipped with the resources and financial support to take on the new responsibilities outlined in this Bill so that we do not place more stress on an already overstretched NHS system. We must also better understand how the Government intend to monitor the effectiveness of those regulations and regulatory bodies, as well as the nature of their role in doing so.
The NHS is one of our nation’s greatest achievements, and any attempt to make it stronger is always to be welcomed. We must make sure that the United Kingdom’s health industry and the NHS help to make the lives of our citizens and those abroad safer, healthier and more dignified.
I am happy to give my hon. Friend the assurance that there will be that continuity. That is precisely the aim of the Bill.
The shadow Secretary of State asked me to comment on reports that he had read in the papers today about health security. The UK is open to exploring co-operation between the EU and other specific narrowly defined areas when it is in the interests of both sides—and on matters of health security, it would be foolish not to.
Several Members discussed clinical trials, with a particular eye to the rare diseases cohort, which is obviously, by its nature, small. It is only sensible to ensure that we have the ability to collaborate across Europe to determine that we have the best environment for the development of drugs. I would caution people to breathe before we go forward. We are committed to ensuring that we remain the best place for those on rare disease trials.
The Medicines and Healthcare Products Regulatory Agency has taken steps to ensure that there is absolutely no disruption to clinical trials and that they can continue seamlessly. It is important that we are tempered in tone to ensure that people’s clinical trials carry on. We want a world-leading regulatory system for clinical trials that allows us to collaborate effectively—not only across Europe, but globally. We have one of the best life sciences industries in the world, for which effective collaboration is important.
Now that we have left the European Union, it is important to make it clear that UK sponsors will still be able to run multi-state trials across the world. We want a regulatory system that maintains and enhances the attractiveness of the UK as a site for global co-operation in research.
I move on. We will extend prescribing rights to physician associates through other means. We are discussing the extension of physician associates’ rights for prescribing in the context of the increase in clinical professionals who will be working in the health service. The broader ability of the Bill to ensure prescribing rights will be carried through only in collaboration with the appropriate regulatory oversight, whether from the General Medical Council or the Health & Care Professions Council, depending on whether allied health professionals or physician associates are involved.
The hon. Member for St Helens South and Whiston (Ms Rimmer) asked whether clinical trials data would include those forced to participate. I assure her that clinical data used to support regulatory activity in the UK needs to comply with international good clinical practice standards, including ethical considerations such as the critical principle of informed consent. That means that the appalling cases to which she alluded could not be involved in clinical trials.
There are signs up in Chinese airports saying “Organ transplants this way” in English; there is a clear path through. I am not saying that it is the English who are going, but the system is international. People are going out. France is already taking steps to stop organ tourism.
I thank the hon. Member for that intervention.
Let me point out to the shadow Secretary of State that it is possible that the use of artificial intelligence—to determine what treatment to give a patient, for example—would fall within the scope of the regulation-making powers in the future. It is right that we have the tools to respond to this kind of technology in the years ahead. I was most interested by the comments of my hon. Friend the Member for Bolton West (Chris Green) about better patient outcomes. I could not agree with him more about the importance of the life sciences sector, and about using data to inform as we go forward. The MHRA will be able to conduct inspections for manufacturing, distributions, clinical trials, laboratories and pharmacovigilance, and it is important that that continues to ensure that we uphold standards.
There were numerous other comments, particularly about the medicines and medical devices lists and register. I look forward to ensuring that we have a robust debate in Committee about what is best for the patient and the clinician. My hon. Friend the Member for Bosworth (Dr Evans) made an important point about clinicians perhaps annotating patients’ notes with information about why they used a particular medicine or device.
We have spoken about medical devices perhaps being manufactured at a patient’s bedside. The shadow Minister mentioned having a barcode on each device. It would be quite hard to barcode a device when it was manufactured in order to put it on to a register. I hope that having this discussion in later stages will inform us all how best to do this.
I hope that the spirit of this debate—one in which we are all in support of a common purpose—carries through to the examination of the Bill. This legislation offers an opportunity for the UK to protect patients, support the development of an exciting and important sector, and do what is best in the UK for the UK’s interests. I commend this Bill to the House.
Question put and agreed to.
Bill accordingly read a Second time.
Medicines and Medical Devices Bill (Programme)
Motion made, and Question put forthwith (Standing Order No. 83A(7)),
That the following provisions shall apply to the Medicines and Medical Devices Bill:
Committal
(1) The Bill shall be committed to a Public Bill Committee.
Proceedings in Public Bill Committee
(2) Proceedings in the Public Bill Committee shall (so far as not previously concluded) be brought to a conclusion on Thursday 23 April 2020.
(3) The Public Bill Committee shall have leave to sit twice on the first day on which it meets.
Proceedings on Consideration and up to and including Third Reading
(4) Proceedings on Consideration and any proceedings in legislative grand committee shall (so far as not previously concluded) be brought to a conclusion one hour before the moment of interruption on the day on which proceedings on Consideration are commenced.
(5) Proceedings on Third Reading shall (so far as not previously concluded) be brought to a conclusion at the moment of interruption on that day.
(6) Standing Order No. 83B (Programming committees) shall not apply to proceedings on Consideration and up to and including Third Reading.
Other proceedings
(7) Any other proceedings on the Bill may be programmed.—(James Morris.)
Question agreed to.
Medicines and Medical Devices Bill (Money)
Queen’s recommendation signified.
Motion made, and Question put forthwith (Standing Order No. 52(1)(a)),
That, for the purposes of any Act resulting from the Medicines and Medical Devices Bill, it is expedient to authorise the payment out of money provided by Parliament of:
(1) any expenditure incurred by a Minister of the Crown, a government department, a person holding office under Her Majesty or any other public authority by virtue of the Act; and
(2) any increase attributable to the Act in the sums payable by virtue of any other Act out of money so provided.—(James Morris.)
Question agreed to.
Medicines and Medical Devices Bill (Ways and Means)
Motion made, and Question put forthwith (Standing Order No. 52(1)(a)),
That, for the purposes of any Act resulting from the Medicines and Medical Devices Bill, it is expedient to authorise the charging of fees, or other charges, arising by virtue of the Act.—(James Morris.)
(5 years, 1 month ago)
Commons ChamberUrgent Questions are proposed each morning by backbench MPs, and up to two may be selected each day by the Speaker. Chosen Urgent Questions are announced 30 minutes before Parliament sits each day.
Each Urgent Question requires a Government Minister to give a response on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
We are putting record amounts of funding into the NHS, but I would rest again on the independence of the NICE process and the fact that it is experts and clinicians who are making these decisions. I agree that these are dreadful decisions and it is very hard for us to make them, which is why we rely on that expert advice. I would say to the hon. Gentleman that other jurisdictions are not always a good comparison.
I thank the hon. Member for North East Somerset (Mr Rees-Mogg) for securing this urgent question.
Will the Minister, while working to secure the funding of the drug Brineura to help sufferers of Batten disease such as my young constituent Kaycee Bradshaw, look at how we can help to prevent companies such as BioMarin from charging extortionate fees for life-changing drugs? Sadly, this company also charges beyond the NICE framework for Kuvan, a vital drug needed by my young constituent Liam, who suffers from PKU. BioMarin made a net-product revenue increase for 2018 of $31.3 million from Brineura and $26.1 million from Kuvan, and $1.5 billion from across its range of drugs. This, by my standards, is a clear example of playing profits with people’s lives. It hurts even more that it is children who are suffering. It is not on. It is time that Governments got together and took heed. We do not know what other countries are paying. It might be less than our £300,000 or it might not, but something must happen. Get together and put the pressure on, but please, please secure these drugs for our children.
I pay tribute to Kaycee and Liam. The hon. Lady makes a very important point. We want pharmaceutical companies to develop their medicines here, so that they are brought to the market here first and our constituents have access to them. However, we also have an obligation to spend taxpayers’ money in a very fair way, so that every penny we spend is spent correctly and appropriately. When it comes to PKU, Orkambi or Brineura, what we are all—NHS England and all of us here—saying to the drug companies is that we will pay a price, but we want it to be a fair price.
(5 years, 1 month ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
It is a pleasure to serve under your chairmanship, Mr Pritchard. I applaud the hon. Member for Burton (Andrew Griffiths) for securing this debate. Children and young people’s mental health is incredibly important. I appreciate the contributions of other Members. I have similar situations of children suffering in my constituency, but I will not repeat them.
I want to focus on three issues that are important to the mental health of our young people. First, I want to raise the issue of young people’s mental health within our judicial system, which I spoke about in this Chamber only a few months ago when I highlighted how young people with mental health issues had been forgotten in the Government’s response to the Justice Committee’s report on the disclosure of youth criminal records. I emphasise that when we look at the Government’s funding plans for young people’s mental health—they are welcome, but could stand to go further—we should not forget the vulnerable young people who have been taken out of mainstream schools and placed under the care of the UK’s judicial system. Many of those young people may not understand why they are there, and they are placed under stress and pressure that even we as adults would struggle to cope with. We must ensure that does not lead to the degradation or further degradation of their mental health, which may damage their chances of rehabilitation.
Secondly, I want to raise the issue of personal, social, health and economic education—also known as PSHE, and formally known as citizenship—for those young people still within our education system. Frankly, the provision is woefully inadequate for the issues it is trying to tackle. There is little to no guidance from central Government, and how the provision is conceived and delivered is almost completely up to the school. That has produced an almost laughable system where each school can have a completely different interpretation of the curriculum and its requirements. One school might require just 15 minutes a week during form time, yet 30 minutes down the road, another school might give an hour’s lesson once a week.
Within that time, teachers are expected to cover everything from mental health to how mortgages work, to sexuality, to how Government and this place works, all with little to no guidance. Many schools simply do not provide the time required to tackle the subjects properly. The lesson material is often put together by a teacher who happens to have the time or by a third-party company that knows little to nothing about it. Neither of them may have the necessary subject matter expertise. I call on the Government to get to grips with the issue and make PSHE a statutory subject with guidelines on the content of the subject area, so that the situation does not essentially amount to, “It’s up to you.” There should be a key focus on mental health, which is too important to have such vague guidelines.
Finally, I want to touch upon the subject of loot boxes in video games. For those who do not know, loot boxes are a mechanic in video games that require someone to pay money to get a box or a pack. Within the box, they might get a piece of very good equipment, a rare boost or a character that will give them an edge when playing online against other people, or they might get something that is rubbish. If they already have it, it is virtually useless to them. To put it in plain English, loot boxes or “surprise mechanics” are essentially gambling. The mechanics also have no impact on the age rating for a game, meaning that young people of all age ranges can be exposed to what are basically gambling mechanics.
I am not someone who believes that video games are bad for young people and rot their brains, as some would put it, but such gambling can have a negative effect on young people’s mental health and cause addiction. There is a reason why we have age restrictions for fruit machines and gambling websites. Even then, we can see the negative effect on adults. I therefore call on the Government to follow the lead of countries such as Belgium and step in to deal with gambling mechanics and their impact on the mental health of our children.
(5 years, 6 months ago)
Commons ChamberThere are several points here. On local community services, as the hon. Lady heard, we are putting an extra £4.5 billion into community and local health services. Through the National Institute for Health Research, we fund brain injury research into how technology and other innovations can be used to better support people.
The social care Green Paper will bring forward proposals to ensure that all adults, including those living with dementia, receive high-quality care whenever they need it. The Government also remain committed to delivering Challenge on Dementia 2020, making dementia care in England the best in the world.
Sadly, there are an estimated 3,000 people over 65 living with dementia in my constituency. It is clear that the social care crisis is a dementia crisis. Alzheimer’s Society research shows that dementia care providers often charge a premium rate of over 40% more than the standard rate. Will the Minister consider introducing a new dementia fund, as part of the Green Paper process, to end the unfairness facing dementia patients and their families?
The hon. Lady is absolutely right to raise dementia. It is a massive issue in everybody’s constituency and there is hardly a family that is not affected by it in some way. We are on track to meet our pledge to invest £300 million in dementia between 2015 and 2020. We continue to fund research for dementia treatments and cures. The Care Act 2014 introduced a national threshold that defines the care needs local authorities must meet, eliminating the postcode lottery of eligibility across the UK.
(5 years, 7 months ago)
Commons ChamberAbsolutely. I look forward to working on that with my hon. Friend and local commissioners, and also to working with my hon. Friend before the spending review, when the next round of the capital allocations will be set.
Yes, 100%. That is exactly what is in the plan, and I am delighted to have such support. This is precisely the direction in which we need to go in integrating care to ensure that patients are served better, whoever is the ultimate funder of the service.
(6 years, 5 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
It is a pleasure to serve under your chairmanship, Mr Evans. I congratulate the hon. Member for Sutton and Cheam (Paul Scully) on securing the debate. For good reason, the issue has galvanised popular opinion.
As we all know, cystic fibrosis is an extremely serious, debilitating and life-limiting—yet thankfully rare—diagnosis. As we have heard, in February, Vertex proposed a portfolio approach whereby all current and future cystic fibrosis medicines, including Orkambi, would be made available to eligible patients through a fixed budget cap to the NHS.
I was extremely disappointed to hear NHS England’s response on Friday that there will not be further funding for Orkambi. As it is a treatment that is proven to improve and prolong the lives of 50% of sufferers, that decision is a cruelty to cystic fibrosis sufferers across the country. The portfolio approach has been accepted and agreed in the Republic of Ireland, Austria, Denmark, France, Germany, Luxembourg, the Netherlands, Italy, Greece and the US, but sadly, discussions here—with the world’s best health service—have broken down.
CF causes a build-up of mucus in the lungs that means that patients require physiotherapy, almost from birth, to keep them breathing properly. CF patients are more susceptible to lung infections and can suffer from malnutrition owing to the effect of the condition on the pancreas. When NICE made its initial evaluation of Orkambi as a treatment for the devastating condition, the evidence that it slows lung deterioration by 52% and reduces hospital admissions was not available, and therefore not costed. NICE is simply not fit for purpose any longer; it cannot evaluate a portfolio approach and precision drugs. For NHS England to turn its back on the small group of patients that suffers with this rare, debilitating illness and to ask Vertex to reapply to NICE is shocking. If it did reapply, it would get exactly the same answer—so why do it? Does NHS England understand that? Does NICE understand that? Are we going to send these seriously affected families around and around?
Vertex now has a broader pipeline of 18 drugs that will follow Orkambi in the next seven years. If the portfolio is agreed, it will advance on to those medicines. Will the Minister work towards a more flexible approach? Simply, he must get involved to benefit the small group of patients for whom a much better quality of life is in sight, but just out of reach, otherwise they will never get the treatment that they deserve and that they should be getting.
The parents of two constituents, Christian Jones and George Barton, contacted me. Christian’s mother, Hayley, wrote to me and said that Orkambi
“is not a cure but it is life altering, as it lowers admissions and reduces lung deterioration by 42%.”
She believes that Christian’s other medications will only increase unless he can access the drug. She also wrote:
“This genetic condition is awful to live with as a parent, wondering whether you will bury your child before they reach 20. I can’t begin to know how it must be for my son and other patients when they can’t breathe properly or speak without coughing or how his lungs must burn.”
She has nothing but praise for the NHS, in particular Whiston Hospital in my constituency where Christian has been treated since he was just weeks old. He is now two. In trials, Orkambi has been shown to help children aged between six and 11 to improve their oxygen uptake by up to 10%.
Orkambi would also be of immeasurable benefit to my constituent George Barton. George’s mother, Louise, wrote to me when she heard that the NHS’s provision of Orkambi was going to be debated in this place. George is eight years old and, like Christian and most other CF sufferers, was diagnosed as a young baby. CF is progressive, so George’s lungs are beginning to degenerate. Every day, he takes 30 to 40 tablets, has an hour of physio and takes two nebulised antibiotics. Louise told me that when he catches an infection, he can quickly become so seriously ill that he needs extra physiotherapy and intravenous antibiotics three times a day for a full two weeks. At times, George has to stay in Whiston Hospital, or, because he and Louise live nearby, the nurses come out and take care of him at home. In fact, when Louise first wrote to me, she was in hospital with George on a two-week stay. She wrote that although
“the damage to his lungs is becoming more serious, Orkambi can slow this down”.
George, Christian and thousands of other CF patients need that niche treatment, and there is the political will in this place to fight for them. Only about 3,000 people would benefit from the drugs. I urge the Minister to get involved, to facilitate further discussions between NHS England and Vertex, and to push for a flexible solution. Orkambi is a different type of drug that we cannot evaluate at this time. This is not only about licensing Orkambi, but the promise of those 18 drugs still to come, which Vertex will advance on to. NICE simply cannot evaluate and I urge the Minister to intervene.