Antibiotics: Research and Development
Chi Onwurah Excerpts(8 years ago)
Westminster HallRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Westminster 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
Julian Sturdy (York Outer) (Con)
I beg to move,
That this House has considered incentivising research and development of new antibiotics.
It is a pleasure to serve under your chairmanship for the first time in this hall, Mr Evans. I am delighted to have secured the opportunity once again to introduce a debate on the increasingly urgent issue of antibiotic resistance. I first debated this issue back in October 2014, when I discussed the wide-ranging causes of antimicrobial resistance—AMR—and our urgent need to address the problem head-on.
Today, I will focus on the most pressing elements of the issue: the need to incentivise more research and development of new antibiotics so that we have new drugs coming on stream to meet our future needs. Before I discuss the development of a new funding model for antibiotics, I will briefly explain exactly why AMR is such a pressing issue. This is far from being a problem only for the future; it came as a shock when, before my last debate, doctors in my constituency told me that patients were already experiencing the devastating effects of AMR. Across the country, we are seeing an increasing number of patients in intensive care units who have resistant infections, meaning that there is no effective treatment available. Antimicrobial-resistant infections already kill some 50,000 people every year across Europe and north America, but sadly the reality of AMR today is nothing compared with the nightmarish scenario of the future. The initial paper of Lord O’Neill’s AMR review concluded that
“a continued rise in resistance by 2050 would lead to 10 million people dying every year”.
That is more than the number of people who will die of cancer, and it is double the number of people who will die of cholera, diabetes, diarrhoea, measles, tetanus and road traffic accidents combined. Some might say that AMR is the biggest threat to mankind.
We have also been warned that the secondary health effects of AMR could result in a return to the dark ages of medicine. Our national health service and other modern health systems across the world rely heavily on antibiotics. When surgery is undertaken, for example, patients are given antibiotics to reduce the risk of infection. In a world in which antibiotics do not work, surgery will become far more dangerous. Many routine procedures, such as hip operations, will become too risky for many elderly patients, depriving them of their mobility and their active lives. Cancer treatments such as chemotherapy supress patients’ immune systems, making them more susceptible to infections. Without effective antibiotics to prevent those infections, such life-saving treatment could no longer be an option. As Jeremy Farrar, a director of the Wellcome Trust, said:
“We are sleepwalking back into a time where something as simple as a grazed knee…will start to claim lives.”
Thankfully, medical opinion is, in the vast majority of cases, that the looming global crisis can be avoided if we take action, but it must be taken sooner rather than later. It is encouraging that there have been numerous positive developments since this topic was last debated in Westminster Hall. The £20-million Fleming fund was announced in March 2015, and it will support the delivery of action plans for AMR laboratory surveillance across the world, with a particular focus on low-income countries. Just before the 2015 general election, I was delighted that the Conservative party manifesto said:
“Antibiotic resistance is a major health risk so we will continue to lead the global fight against it, taking forward the recommendations of the independent review launched by the Prime Minister”.
I promise that that will be my last reference to party politics, because this issue has the support and attention of every party in this House. AMR is such a huge issue that it transcends party politics.
Chi Onwurah (Newcastle upon Tyne Central) (Lab)
I thank the hon. Gentleman for securing this debate on an important subject. Before he completely passes on from party politics—I agree that this issue cuts across all party politics—does he agree that the nature of antibiotics, and the fact that we want to use them as little as possible when they are discovered or invented, drives against the free market system, in which new products and services are used as much as possible? For that reason, the Government and the public sector must take action, because to be effective, antibiotics should be used not as much as possible but as little as possible.
Julian Sturdy
I agree with the hon. Lady’s last comments. She is right that antibiotics must be used as a last resort, which is why, as I will say, the current funding model for antibiotic research is broken, and why we have to correct it.
Julian Sturdy
My hon. Friend is right. Later in my speech, I will discuss the model of how antibiotics are used across the country. It is chilling how antibiotics are used in different parts of the country. Testing to find out resistance to certain antibiotics is also important before any antibiotics needed are used. It is not just a matter of how we bring new antibiotics to market, which can take 15 years; it is also about how we protect our existing armoury of antibiotics to buy us time for those new antibiotics to reach the market.
The £1 billion Ross fund was announced by the Chancellor in the spending review of November 2015. Some £350 million will be spent fighting AMR by strengthening surveillance of drug resistance and laboratory capacity in developing countries, and by delivering the new global AMR innovation fund with China. In January 2016, at the World Economic Forum in Davos, 85 major pharmaceutical and biotech companies agreed to the declaration on combating antibiotic resistance, which demonstrates the industry’s willingness to take up the challenge. Earlier this month, the Chancellor addressed the issue once again by highlighting the importance of AMR at the International Monetary Fund in Washington DC. He confirmed what the industry has long been telling us: that the reimbursement models for antibiotics are broken. I entirely agree that a global overhaul is required, and I will focus on that issue today.
Lord O’Neill has also backed proposals to change the way we develop new antibiotics for the marketplace. We all look forward to the AMR review publishing its final set of recommendations in the months ahead, and the Minister might be able to give us a firmer timescale for that review. In my previous debate on antibiotic resistance, I raised the key issues at stake in the growing challenge of this continuing problem. We know that using antibiotics inappropriately increases resistance and the risk associated with routine treatments. In the last debate on the subject, I mentioned that in India, many prescriptions are purchased over the counter to treat a wide variety of unsuitable illnesses, often with no professional diagnosis. Such practices compound the problem. However, it is greatly encouraging that many countries around the world have now woken up to the impending disaster that we could face if we simply do nothing.
As a consequence, things are starting to move forward, which must be seen as positive. However, the central challenge of getting new antibiotics on stream remains. As the Chancellor said earlier this month and as we have heard, the current funding model is no longer fit for purpose. The O’Neill report makes it clear that it typically takes about 15 years for an antibiotic to go from the initial research stage to final delivery to the marketplace. For that to happen, a large amount of money is required up front to fund the project, at a stage when the company has absolutely no idea whether the drug will succeed. Astonishingly, only about 2% of products, or one in 50 proposed new antibiotics, successfully make it to the marketplace. In the vast majority of cases, large sums of money are invested with no financial return whatever.
Although to a certain extent that is true of the manufacture of all new drugs, the problem is far worse for antibiotics. Conditions such as cancer or diabetes often closely follow demographic trends, so new drugs are also used as the medication of choice for cancer or diabetes, as they are more effective than the older prescriptions. In the case of antibiotics, however, generic products can treat infections as well as new drugs for far less money, except where there is resistance. Furthermore, in the attempt to slow the development of resistance, new antibiotics are often held back and are prescribed only when everything else has failed. That is the right thing to do. The market for new antibiotics is therefore limited to a small section of patients, as new drugs are used only when existing drugs are no longer effective. They will be required as a first-line treatment only many years after their introduction, by which time their exclusive patents have often expired.
That may explain why so many pharmaceutical companies have, sadly, exited the market over the years. Of the 20 pharmaceutical companies that were the main suppliers of new antibiotics back in the 1990s, only four remain. Furthermore, only five new classes of antibiotics have been discovered in the last 15 years. Sadly, some companies are waiting for resistance to rise before they even explore the viability of investing in a new product, which is clearly not in the best interest of patient health and wellbeing, or of the future of health care as we know it. Under the current funding model, the profitability of any new drug depends entirely on how many units are sold. As discussed, that is not suitable for the development of new antibiotics. Incentivising the increased use of antibiotics only increases resistance in patients, which can have devastating consequences.
The O’Neill review therefore proposes the creation of a more predictable marketplace that will sustain commercial investment in antibiotic research and development. A key proposal that has the full support of many pharmaceutical companies is for profitability to be de-linked from volume of sales for new antibiotics. That would guarantee developers an acceptable return on their investment when they produce a new antibiotic that fulfils an unmet clinical need. That is especially important when volume would not be sufficient to make the product commercially viable, despite its value to the NHS. A de-linked model also has the added benefit of eliminating any incentive to oversell antibiotics needlessly as cure-all miracle drugs, which, sadly, still occurs.
Before being elected as a Member of this House, as many know, I was a farmer—a farmer who produces food, not a pharma who is part of the prescription sector—so I do not pretend to know exactly what model is right for our national health service. However, it seems to me that an insurance-based approach that shares financial risk is certainly worth the Government’s consideration. Providing developers of the most important antibiotics with a fixed fee would remove the current financial uncertainty from the marketplace. It would also limit financial uncertainty for the NHS: if there were an outbreak of an infection requiring the antibiotic, the costs would be capped at an agreeable level.
I understand that AstraZeneca and the Association of the British Pharmaceutical Industry have been working closely with the Department of Health to develop such a model. We must continue to encourage innovation while doing what we can to remove the financial uncertainty of developing key new antibiotics. At the same time, it is essential that any new funding model provides the best possible value to the taxpayer. There should be no additional support in areas that are already adequately supported by the marketplace.
Chi Onwurah
I thank the hon. Gentleman for being generous in giving way a second time, and for making an excellent summary of the case. Although the state—the national health service—should share the risk, does that not mean that it should also share the benefits and returns? As the economist Mariana Mazzucato sets out in “The Entrepreneurial State”, where the state invests, particularly in services such as this one, there should perhaps be a return to us as well, so that the upside as well as the downside is shared.
Julian Sturdy
I do not disagree at all. There must be a return, in the first place, for the companies looking to develop drugs, or they will not come forward. Delivering new antibiotics must be viable. At the same time, it is absolutely right that if the Government, the NHS or, ultimately, the taxpayer invests in those drugs, they also must see the benefit and the return. When we talk about risk, we are talking about shared risk, and if we are talking about shared risk, we should be talking about shared return.
I hope to receive the Minister’s undertaking that he will continue to work closely with companies such as AstraZeneca and with the Association of the British Pharmaceutical Industry to develop a model that supports innovation and removes financial uncertainty. The industry has asked for a clear timetable of action on the development of a new funding model, as it is essential that we turn our positive words into meaningful change.
However, it is worth saying that pharmaceutical companies do not have a monopoly on innovation, and they alone cannot solve the colossal problem of AMR. Within our rich medical marketplace across the country, there are a range of other organisations that are well positioned to offer invaluable assistance in this exciting area of discovery. In fact, the O’Neill review makes it clear that the research and development of antibiotics must be opened up, offering new opportunities for small and medium-sized enterprises, academic research teams and not-for-profit entities to compete with established players in the market.
I am proud to say that one such charity is based in my constituency: Antibiotic Research UK, or ANTRUK, is the first charity in the world set up to tackle the challenge of the scarcity of new antibiotics to treat resistant bacterial infections. Some of the country’s leading scientific and clinical experts form part of this team, and they all share the same concern about the slow progress made in combating AMR, as well as a passion for taking practical steps to take up the challenge.
The charity has three key missions: first, to develop a new antibiotic therapy by the early 2020s; secondly, to educate both practitioners and the public alike about the threat of AMR; and thirdly, to provide support to patients with antibiotic-resistant infection. In less than two years, ANTRUK has raised over £400,000, and it is working towards a programme of developing antibiotic resistance breakers. This technique reverses the resistance and extends the life of existing antibiotics. ANTRUK believes that is the best hope of finding a way of breaking AMR in the short term. Basically, it is a way of buying us more time to develop new antibiotic drugs.
Charities such as ANTRUK are ideally placed to work with both the Government and large pharmaceutical companies in finding a solution to AMR. However, to maximise its effectiveness, ANTRUK needs our support. Despite being a new player in the industry, it is already demonstrating the innovative ways in which it can help to inform public policy on AMR, an issue touched on earlier in an intervention.
In co-operation with an analytic database company, ANTRUK has published a heat map of England that shows how the number of antibiotic prescriptions varies across the country. I am happy to show this map to interested Members. The results are absolutely fascinating. The research demonstrates that the number of antibiotic prescriptions being given is rising at an alarming rate in some of the most hard-pressed areas of England. The key findings are that there is a widening gap in antibiotic prescription. For example, doctors in London prescribe 20% less antibiotics than doctors in the north, and doctors in the most hard-pressed coastal towns in Lincolnshire, Norfolk and Essex are prescribing the most. In Clacton-on-Sea, the number of antibiotic prescriptions by doctors is almost double the national average. Furthermore, doctors prescribe almost 60% more antibiotics in December than they do in August. At first glance, that might not seem surprising, but many illnesses treated by antibiotics are not seasonal in nature. Is this another example of the potential misuse of antibiotics? On a positive note, it appears that the number of prescriptions peaked at 3.4 million in 2012 and has since dropped by more than 5%.
Such research is absolutely vital in the fight against AMR. It demonstrates how charities can complement the vital work of Government and the large pharmaceutical companies. Consequently, I would be most grateful to the Minister if he would agree to meet me and a delegation from ANTRUK to discuss how the Government can assist it with its mission to combat AMR. A key request is for a relatively small amount of funding from the £12 billion foreign aid budget to assist ANTRUK’s work, which could have a revolutionary impact across the world, particularly in developing countries.
I have already had one such meeting with the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison), who has responsibility for public health, along with my hon. Friend the Member for Thirsk and Malton (Kevin Hollinrake), who is also my neighbour. Sadly, he could not attend today’s debate. That meeting proved to be immensely helpful, and I hope that the Minister will agree that charities, and not just the large pharmaceutical companies, have a key role to play in the fight against AMR.
Ultimately, antibiotics are often woefully undervalued, in the sense that their price often bears no resemblance to their overall value to society. Since Dame Sally Davies published her report on the threat of AMR back in 2013, there has been an unprecedented focus on the need to change how we tackle the threat of resistance. However, this concern and the widespread discussion of the topic need to be translated into action if we are to tackle the problem head-on.
Antibiotics are the fire department of our health service, and they need a better funding model. We do not pay our firefighters only when they put out a fire; nor do we think that it is a poor return on our investment when they are not in action. Instead, we ensure that we have a well-funded fire service in place at all times, to protect us in our hour of need. It is a service that we all take for granted, and exactly the same is true of our use of antibiotics.
It is probably fair to say that whoever discovers the cure for cancer will go down in history, but the pioneer who prevents a return to the dark ages of medicine through a new antibiotic discovery will probably be forgotten. Nevertheless, the clock is now ticking, and producing positive noises without taking action is simply not an option. I hope the Minister will agree to publish a clear timetable on reforming the antibiotic funding model, and I also ask him to meet me and representatives of ANTRUK, who I know have so much to offer in furthering the process of making our next great discoveries.
I hope that the Minister will work with Departments across Government to give due consideration to the idea of allowing a greater proportion of our generous foreign aid budget to be used in this vital area of study. We have the potential to be world leaders in this field. I have heard, as other Members probably have, reports that Sweden is exploring options for changing its funding model. We must not let Sweden steal a march on us.
It was British innovation that ushered in the golden era of medical discovery. Without action, we risk squandering that legacy for future generations, who may not have the benefit of antibiotics as we know them today. It is absolutely right that global action is required to solve what is ultimately a global problem, as drug-resistant bacteria do not recognise national boundaries. We have the opportunity to safeguard the future of medicine as we know it. To achieve that goal, we must both set the standard and rise to the challenge, and hopefully the rest of the world will follow us.
Junior Doctors: Industrial Action
Chi Onwurah Excerpts(8 years, 1 month ago)
Commons ChamberRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Urgent 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
Ben Gummer
I will join my hon. Friend. I only hope those on the Opposition Front Bench will also join him.
Chi Onwurah (Newcastle upon Tyne Central) (Lab)
The Minister has described those seeking to protect our national health service and their own work-life balance as being radicalised. Will he apologise for this insult to junior doctors and the English language and urgently seek a more consensual and inclusive resolution?
Ben Gummer
If the hon. Lady had been at the debate, she would know that I did not say that. It is important to understand that there is a wide gap between junior doctors and a few of the people who seek to represent them on the junior doctors committee, who have taken an increasingly militant view and whose motives, I would suggest, are not entirely in the interests of their members.
Ebola
Chi Onwurah Excerpts(9 years, 7 months ago)
Commons ChamberRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Mr Hunt
The hon. Gentleman is right, although the millennium development goals have been successful in making a start on the process of reducing health inequalities. We can see that in other areas, such as the provision of antiretroviral drugs to HIV-positive patients in Africa, and that has been completely transformed in the past decade. But he is right: while some countries have very underdeveloped health care systems, the risk of such public health emergencies is much higher and therefore the risk to the UK is higher.
Chi Onwurah (Newcastle upon Tyne Central) (Lab)
I should like to echo the tributes paid to our NHS volunteers and to all health workers. Today of all days, it is important to recognise the sacrifices that they make. The Secretary of State has indicated that Newcastle’s Royal Victoria infirmary in my constituency is next in line after the Royal Free to receive Ebola victims. Will he say a little more about what measures are or will be in place for public awareness, training, equipment, staffing and basic hygiene procedures to enable that to happen?
Mr Hunt
I am happy to let the hon. Lady have full details of what is being planned at the RVI, which is an excellent hospital. It was one of the hospitals that was part of the exercise that we did on Saturday to test preparedness. In that exercise, we modelled what would happen if someone became sick and vomited in the Metro centre and was then transferred to the RVI. We modelled the decisions about whether they would be kept there or transferred to the Royal Free, and so on. I am very satisfied with the measures in place at that hospital, but I will happily send her the details.
Mitochondrial Replacement (Public Safety)
Chi Onwurah Excerpts(9 years, 8 months ago)
Commons ChamberRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Chi Onwurah (Newcastle upon Tyne Central) (Lab)
I am proud that in Newcastle upon Tyne Central, my constituency, Newcastle university has pioneered research into variations on IVF treatments and procedures that can prevent the transmission of the genetic mutations that cause those devastating disorders. We also have victims of that devastating disease in Newcastle, such as Lily Cass, who is in her 70s. Some days she can hardly move due to a lack of energy caused by her faulty mitochondria. It takes all her strength away. She has four children, including a daughter, who is likely to pass the disease on to her children. She worries about that all the time. For those women and their families, the most important help we can offer are those potential treatments.
I want to focus on the so-called three parents issue. The embryo would carry just 13 out of 23,000, or 0.056%, of the genetic material from the mitochondrial donor. As the right hon. Member for Havant (Mr Willetts) said, it is not the nuclear DNA, so the child’s appearance, personality and other features are not affected. In Britain, the egg donation and surrogacy principle, whereby more than two parents can contribute biologically to the birth of a child, is already recognised. Medical procedures that introduce a donor’s biological material are also long accepted. The headlines, such as the BBC’s recent “Mum plus dad plus mum”, are not only sloppy and sensational, but unscientific. I would like the BBC’s other programme, “More or Less”, to comment on whether giving 0.056% of genetic material and 0% of nuclear DNA really constitutes being called “mum”.
The UK is carrying out pioneering research on mitochondrial diseases. This country has the opportunity to be at the leading edge of the world in preventing such terrible diseases. It has taken us years to get to this point. Never before has a technique had such rigorous investigation, and ethical and scientific analysis. It is therefore incredibly important that progress does not stall.
NHS Investigations (Jimmy Savile)
Chi Onwurah Excerpts(9 years, 10 months ago)
Commons ChamberRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Mr Hunt
I would like to reassure the hon. Lady that we have a Home Office committee, chaired by the Home Office Minister from her own party—the Minister for Crime Prevention, the hon. Member for Lewes (Norman Baker)—that is drawing together all the lessons from Savile across all Departments. It is then going to take that view as to what needs to happen next to prevent child sexual abuse, and I would like to reassure her that the Home Office and the Government as a whole have no higher priority than that.
Chi Onwurah (Newcastle upon Tyne Central) (Lab)
Jimmy Savile visited the Royal Victoria infirmary in Newcastle on a number of occasions—generally, it appears, around the time of the great north run. The Newcastle hospital trust’s investigation concludes that nothing untoward happened and there was constant supervision, but it refers to an NSPCC investigation that had access to other witnesses, which suggests that unsupervised access did occur. That is obviously a matter of huge concern for everyone who put their trust in the RVI, whether as a patient or as a child. Is not my right hon. Friend the Member for Leigh (Andy Burnham) right? It is not up to them to try to draw what could be horrendous conclusions from these somewhat conflicting reports. Do we not need an overarching independent inquiry?
Mr Hunt
We are having an overarching independent inquiry—that is what Kate Lampard is doing—but on whether we need to have further inquiries, we need to wait until we get the response, which we are hoping for this autumn, because at the moment, we have published individual reports, but we have not drawn any wider lessons for the NHS system-wide. One of the things that I hope will be a consequence of today is that if there are any victims who were abused at the RVI, they will use today as some encouragement to come forward. I have given instructions and I am absolutely clear as Health Secretary that I want every single one of the concerns of anyone who comes forward to be investigated thoroughly—as thoroughly as all the ones that are tragically coming to light today.
Severe Eating Disorders (North-East England)
Chi Onwurah Excerpts(9 years, 10 months ago)
Commons ChamberRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Catherine McKinnell (Newcastle upon Tyne North) (Lab)
I congratulate my hon. Friend on securing this really important debate. The point she is making reflects the concerns of a few of my constituents who have contacted me. A couple wrote to me and said:
“No one associated with the unit can understand the decisions being taken at a time when the incidence of eating disorders is increasing. Our daughter relies on the excellent treatment and support provided by the dedicated team at the RVI’s unit. We have no doubt that her own health and those of others would suffer if this service was withdrawn.”
Chi Onwurah
My hon. Friend makes an excellent point. Again, the testimony of those most intimately involved speaks to the excellence of the unit and the concern of people in Tyneside.
Guy Opperman (Hexham) (Con)
I congratulate the hon. Lady on securing this debate. Like her, I have had many letters of support from constituents who have been helped by the Richardson eating disorder service, and also from individual nurses and doctors, such as Dr Caroline Reynolds, the consultant psychiatrist at REDS, who have provided assistance to people with this terrible disease. Does the hon. Lady think it would be right for the mental health trust and NHS England, together and collectively, to review their decision and, going forward, address how they will recommission the service when the present contract ends?
Chi Onwurah
The hon. Gentleman makes an excellent point, and I certainly believe that the decision should and must be reviewed. It is clear that a number of hon. Members have been contacted by concerned constituents. Indeed, the right hon. Member for Berwick-upon-Tweed (Sir Alan Beith), who cannot attend this debate, asked me to say that he also had constituents who are affected.
Given that admissions in the north-east are 30% above the national average, and that the Royal College of Psychiatrists recommends that six beds per million of the population are needed for average admission rates, the north-east’s 2.8 million people need 23 beds. I will return to that figure, but first a word about the threatened unit that hon. Members have already referred to.
The Richardson eating disorder service is operated by Northumberland, Tyne and Wear NHS Foundation Trust. It is in the centre of Newcastle, with excellent transport links. It is acknowledged to be an outstanding unit, rated excellent by the Royal College of Psychiatrists and the Care Quality Commission. It has just won Beat’s clinical team of the year award. A stable, vastly experienced staff has been treating adult in and out-patients since 1997, and it has saved many lives. One sufferer said:
“I have suffered from anorexia nervosa for over 12 years and unfortunately during that time I have required many admissions to medical and eating disorder units”.
She names a number of them before going on to say:
“The admission to the Richardson was by far the most successful. I made such huge strides towards recovery and was the healthiest I have been since this all began.”
Mrs Mary Glindon (North Tyneside) (Lab)
In the light of what my hon. Friend says, and the fact that the unit’s model of partial hospitalisation of out-patient services has been so successful, does she not agree that NHS England should look at that model and perhaps reconsider its decision on the specification of specialised services?
Chi Onwurah
My hon. Friend makes an excellent point. Indeed, if the criteria on which this decision was made were publicly available, we could perhaps tell which models NHS England considered and what it hoped to achieve. Unfortunately, there is no transparency, which is one of the key issues.
Problems started in 2010, when commissioned adult eating disorder in-patient beds were tendered and the contract was awarded to Tees, Esk and Wear Valleys NHS Foundation Trust, although it did not then operate an in-patient unit. It quickly established a 10-bed unit in Darlington, but on a site with poor transport links to the north. For clarity for those Members who may not be familiar with the north, Newcastle is to the north of Darlington.
The award was a shock to many people, not simply because of the result, but because of the lack of consultation. I should like to ask the Minister a specific question: against what criteria were proposed services considered to be better than award-winning ones already on offer in the Richardson? If he does not know, I hope that he will promise to find out. Was cost the driving factor? What was the evidence basis for the centralising of these critical mental health services?
The National Institute for Health and Care Excellence guidelines specifically state that for severe eating disorders patients should be treated near their homes, with the support of family and friends. These are often young, vulnerable people, who are not yet independent of their family, either financially or emotionally. As one told me,
“Seriously ill anorexics are often cognitively impaired as a result of severe starvation and separation from loving support, together with that the challenge to dangerous and entrenched behavioural traits is often too much to bear.”
Given the lack of consultation, the north-east specialised commissioning group was instructed to strengthen its relationships with stakeholders and report any other substantial changes or developments to the NHS scrutiny committee.
NEEDAG, formed by carers and patients concerned about the threat to the Richardson, hoped that at least five of the beds in the Richardson would continue to be used by those in the north of the region, given overall regional demand. However, in April 2012, the commissioner increased the number of beds at Darlington to 15—again, without any consultation, scrutiny or performance data by which to make judgments. When challenged, I am told that the commissioner said they were not obligated to consult anyone. I hope that the Minister will correct them on this point. It is possible that the top-down reorganisation of the NHS instituted by this Government may have led to them forgetting their obligations under the NHS constitution.
When Darlington was full, commissioners started sending very ill patients out of the area, instead of to the Richardson, saying that every commissioned bed in England, no matter where it was, had to be filled before a patient from Tyneside could be sent to Newcastle. That is how we have arrived at the ridiculous and tragic situation of our national health service sending vulnerable Tyneside patients to Glasgow, Norwich and London when there are empty beds in the Richardson unit in the centre of Newcastle.
The impact on vulnerable young people of being separated from their families undoubtedly makes it more difficult to recover—hence the NICE guidelines. The cost of visiting for families is enormous, both financially and emotionally. One parent wrote:
“This will then have an effect on our family’s mental health as we are all struggling to come to terms with the condition and to help M recover. I would refuse to let M be admitted so far away from home and would rather give up my full time job to look after her in the familiar and safe surroundings of home.”
Another parent who fought to win a place for their daughter at the Richardson said:
“We were very angry to have been put in the position of having to fight for a bed for our dangerously ill daughter at a time when all our energy was needed to comfort and support her through a very difficult time. The added pressure and anxiety it caused the whole family was dreadful.”
It has been announced that the unit will be closed down, because it was said—cynically and cruelly—that it was not being used locally. If it was not being used locally, it was because NHS England was sending local people hundreds of miles away. Freedom of information requests submitted by NEEDAG show that Darlington’s 15 beds are full; that there are eight in-patients from the north-east in London, Sheffield, Leeds, Glasgow and Norwich; and that five patients have managed to win beds in the Richardson.
Guy Opperman
We all understand the need for and importance of centralised specialist services, whether they be stroke services or those under discussion, but given the number of people per capita in the north-east who suffer from this terrible disease, is there not a genuine case to be made for the two services to co-exist?
Chi Onwurah
The hon. Gentleman makes an excellent point. That is indeed the case. The number of in-patient admissions in the north-east as a result of severe eating disorders is 30% above the average, which suggests that about 23 beds are required. It would be possible to meet the NICE guidelines and retain the services in Darlington and in Newcastle, yet not meet the increasing demand for in-patient beds. There are a total of 28 in-patients from the north-east, but NHS England says that only 15 beds are needed; that clearly goes against the 23 calculated in accordance with guidelines.
NHS England argues that it is investing in the north-east, and that it is opening an intensive day unit in Newcastle that will reduce demand for in-patient care, but it has provided absolutely no evidence to support its claim. One parent said:
“For my daughter the thought of going back to the local community mental health teams fills her with dread.”
A day centre does not address the issues of isolation and support when in-patient care is needed.
Patients are so worried that two of them have decided to take both the trust and the commissioners to judicial review, based on the lack of consultation transparency. They are applying for legal aid, so we will be in the ridiculous situation of spending public money to both defend and attack a decision taken without the most basic public consultation.
Having written to the Minister of State, Department of Health, the hon. Member for North Norfolk (Norman Lamb), on the subject in the past, I know that he is sympathetic to the plight of sufferers of severe eating disorders and their families and friends. Both he and the Secretary of State have criticised sending patients hundreds of miles for treatment. I want the Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich (Dr Poulter), to answer the questions I have already asked and the following two in particular.
First, does the Minister support the concentration of mental health services? In the case of heart surgery for children, we are told that concentration saves lives, because surgeons must be operating on many patients to retain their skills, but the mind does not physically work in the same way as the heart. Does he believe that there is something to be gained from making mental health into a production line? Why is it not possible to maintain beds in Darlington and Newcastle? Why is NHS England not following NICE advice? If the aim is to save money, is this truly a cost saving, or merely moving costs from the NHS to the sufferers of this terrible condition and their family and friends? Is it not outrageous that NHS England should be moving costs on to the most vulnerable and risking lives by doing so?
Secondly, on transparency, how can the Minister possibly support a process whereby there is no consultation on decisions that are so important to the lives of patients and their carers? Is that not in itself a reason to reverse the decision, given that the commissioners did not consult the people to whom they are accountable and in whose interests they are paid—and often paid very well—to commission services?
I will leave the last words to someone more intimately concerned with this than I am, who wrote to me:
“My friend’s beautiful and talented daughter has battled this terrible condition for many years with the help of the Richardson and the support of friends and family every single day that she has been in there. I truly believe that if the unit near to home closes and she feels far from this lifeline of support, she will give up her fight and that could be the end not only of her dream to take up her place at University but possibly, it’s not too dramatic to say, her life.”
Dr Poulter
That is absolutely right, and it is important that there is a strong link between what happens in the community and what happens at the specialist centre. We know that there are advantages to commissioning specialist beds for eating disorders. We know that there is good evidence supporting the fact that that delivers better care for patients. But it is important that there is a strong link between that and what happens to the patient and the young person when they are discharged from that care, and that there is proper support in the community for those people afterwards. That is what will be supplied in this context by the newly commissioned services at Benfield House, which specifically focuses on providing high-quality day services and real support for young people and their families.
Chi Onwurah
I considered the importance of continuity of care and the unique nature of in-patient care requirements, and the Richardson unit had both out-patients and in-patients, and that continuity of care was very important. Please will the Minister address the issue of the Richardson unit?
Dr Poulter
In the brief time available to me now, I will come on to the Richardson unit specifically. The hon. Lady outlined the decisions made in 2010 and why they were made. We must recognise that under the criteria brought in by this Government, there are now strengthened criteria for public engagement in future decisions about commissioning. In future, they will have to be clinically led by local clinicians and made on the basis of strong public engagement. I would hope that those decisions would not necessarily have been taken in the same way had they been made under the criteria introduced by this Government.
I invite the hon. Lady to have a further meeting with the Minister of State, Department of Health, my hon. Friend the Member for North Norfolk (Norman Lamb), when she will be able to raise more of those concerns with him directly, but it is important to recognise that there is now a change in the way in which consultations are carried out. That was not there at the time, and that is part of the reason why there was not the transparency that the hon. Lady wanted and desired; transparency that we would all find desirable, but unfortunately the criteria were laid down by the previous Government. People often felt done to, rather than done for and cared for. That is why we have changed and improved the criteria.
As well as offering that meeting with my hon. Friend, I want to say that it is completely unacceptable for patients to be travelling long distances for their treatment and care at specialist centres and units. That is not good health care. We know that part of the recovery for people with eating disorders is having a community-based package where there is a strong link with family support. On the basis of that, my hon. Friend and I will raise with NHS England the specific issues arising from this debate, and I would also like the hon. Lady to meet my hon. Friend to discuss this further. I hope she finds that reassuring, and that she also finds reassuring the important early intervention measures that have been put in place in her constituency.
Question put and agreed to.
Oral Answers to Questions
Chi Onwurah Excerpts(10 years, 3 months ago)
Commons ChamberRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Mr Buckland
My hon. Friend raises an incredibly important point. Awareness is still far too low. We are now in a position where the legislation is in a good place and we have a good strategy, now being reviewed. There remains, however, an awful lot of work to do on implementation on the ground and on making a real difference to the lives of people with autism.
Chi Onwurah (Newcastle upon Tyne Central) (Lab)
7. What representations he has received on IT and data security issues relating to the GP extraction service; and if he will make a statement.
The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)
Sharing and linking GP and other data—lawfully, securely and appropriately—helps to improve care and provides a solid basis for research to benefit everyone. In addition to more than 100 items of correspondence on the GP extraction service received since July 2013, the Department of Health has also had representations on these issues from the Solicitor-General.
Chi Onwurah
I strongly support the better use of data and ICT to improve national health services, but it must be done securely and with informed patient consent, especially when the data are to be sold on. Yet the Health Secretary admits that he has not carried out any risk assessment of the move to a paperless NHS. Has a risk assessment been carried out for the extraction service and, if so, will he commit to publishing it and any recommendations made?
Oral Answers to Questions
Chi Onwurah Excerpts(10 years, 6 months ago)
Commons ChamberRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Mr Hunt
My hon. Friend speaks extremely well and I fully understand her concern about Mrs Julia Wild and the care she received. I cannot second-guess the clinical judgment of the GMC, but I agree that Mrs Wild is owed an apology. If the local NHS will not give it, I will give it now. We should have spotted the advanced lobular cancer and I apologise to her that we did not.
Chi Onwurah (Newcastle upon Tyne Central) (Lab)
On Friday I visited Cruddas Park surgery in my constituency to see the fantastic work that doctors and staff are doing in the face of huge levels of unmet need, health inequalities and rising mental health issues. If we hold doctors to account for their mistakes, is it not right that they should be able to hold Ministers to account for taking millions of pounds out of their funding and then telling my right hon. Friend the Member for Newcastle upon Tyne East (Mr Brown) that it was nothing to do with him?
Mr Hunt
Doctors should be able to hold Ministers to account, as should the public. That is why they will be pleased to know that we protected the NHS budget, and did not follow the advice of the right hon. Member for Leigh (Andy Burnham), who wanted it cut from its current levels.
Mitochondrial Disease
Chi Onwurah Excerpts(10 years, 10 months ago)
Westminster HallRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Westminster 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
Chi Onwurah (Newcastle upon Tyne Central) (Lab)
It is a great pleasure to serve under your chairmanship, Mr Davies. I am pleased to be able to lead a debate on this most important subject. I shall speak about mitochondrial disease, the devastation it causes and the new techniques developed by Newcastle university to prevent it. I declare an interest in that my father studied medicine at Newcastle, so I am a natural champion of that great university’s medical research and innovation. I am here primarily to champion not Newcastle university however, but the interests of my constituents struck down by mitochondrial disease, and indeed all those who suffer from it.
The subject is technical and I will attempt to be as clear as possible in setting out the arguments. Mitochondria are found in every cell in the human body, except red blood cells. They are the batteries generating energy for the cell. Mitochondria convert the energy of food molecules into the energy that powers the cell’s functions. About 200 children are born every year with a mitochondrial disease. Such diseases are passed from mothers to their children and are caused by faulty mitochondria. Like all DNA, the DNA in mitochondria can mutate and mothers can pass those mutations on to their children. Faulty mitochondria mean that the cells are unable to function normally and the diseases caused by them can have a devastating effect on families. The diseases tend to affect parts of the body that use a lot of energy, such as the brain, muscles, nerves, liver, kidney and heart, and vary widely in severity, from life-threatening to having few or no obvious symptoms. Symptoms vary, but can include poor growth, muscle weakness, tiredness, poor co-ordination, and sensory, respiratory or cognitive problems.
There are no effective treatments available for serious mitochondrial disease. When the cells go wrong, it can result in serious conditions, including blindness, fatal heart failure, liver failure, learning disabilities and diabetes, and can lead to death in early infancy. Prevention is the only realistic option. In 2010, Newcastle university scientists, with funding from the Wellcome Trust, pioneered research into variations of in vitro fertilisation procedures that could prevent the transmission of the genetic mutations that cause these devastating disorders. The techniques use part of an egg donated by a healthy individual, to replace the faulty mitochondria of the affected mother. The intention is to give affected families a chance to have healthy children that are genetically related to them, but born free of mitochondrial disorders. Such techniques are not currently permitted in the UK, but legislation allows the Government to introduce secondary legislation that would allow the treatments to be used.
Mitochondrial disease can blight families for generations, because, as I said, it is passed from the mother to child during pregnancy. The techniques could put a stop to it, by preventing the faulty mitochondria from being passed to the embryo. Mitochondrial disease affects about 6,000 adults in the UK. In my constituency, four families—Bumstead, Cass, Bland and Mahmood—suffer from mitochondrial disease. Although every effort is being made to help them, there is no cure. For example, Lily Cass, who is in her 70s now, has five brothers and three sisters, and one brother who died at 56. They are all affected in different ways by mitochondrial diseases, and some more severely than others. Some days, Lily can hardly move due to lack of energy caused by her faulty mitochondria, which takes all her strength away. She has four children, including a daughter, who is likely to pass the disease on to her children. She worries about that all the time.
For those women and their families, the most important help we can offer is potential treatments, to prevent the next generation of patients from being affected. The opportunity to have their own children free of disease is something that the patients understandably want.
As with all such advances, it is right that the ethics are properly considered before techniques are adopted, and the Minister will be aware that concerns have been raised. There are those who argue that the techniques create children with three parents, but the embryo would carry only a small number of genes from the donor—just 13 out of 23,000, or 0.056% of the genetic material. How much of a parent is that? The function of the 13 genes is restricted to powering the mitochondria; they do not affect personal characteristics such as eye or hair colour, or behaviour.
Last June, the Nuffield Council on Bioethics produced a report that found that the technique would be an ethical treatment option for affected families, as long as research showed that treatment was likely to be safe and effective, and families were offered full information and support. The council’s report found that no strong cultural or social emphasis is generally placed on mitochondrial inheritance as a specific element of personal identity. Many of the social and biological aspects that typically imply a “parent”, and may be relevant in egg donation for reproduction, do not apply to mitochondrial donation. The council therefore suggested that if the treatments were made available, mitochondrial donors should not have the same status in regulation as reproductive egg donors.
Mrs Mary Glindon (North Tyneside) (Lab)
My hon. Friend makes a good case about the serious effects that the diseases resulting from the condition have on families. If we think forward to any children who are fortunate enough to be born without disease because of the treatment, would there be any possibility that they might consider themselves to have three parents, whether or not they had any traits from the third one? Has thought been given to how that would be considered if it should happen?
Chi Onwurah
My hon. Friend is right. There has been some debate about the status not only of the donors but, most importantly, of the children. The Nuffield Council on Bioethics says that families must be offered full information and support, and that must also apply to the children, so that they understand the scientific nature of the very limited gene inheritance from the donation.
If mitochondrial donors were not given the same status as reproductive egg donors, it would be not legally required for them to be identifiable to people born from their donations. The council concluded that the proposed treatments would be a form of gene therapy that would permanently cure the disease in future generations. Changes resulting from the replacement of mitochondrial DNA would be passed on not only to the resulting children, but to the descendants of any girls born from the techniques, via their eggs.
Dr Geoff Watts, who chaired the inquiry, said:
“We understand that some people concerned about the idea of germline therapies may fear that if such treatments for mitochondrial gene disorders were approved, a ‘slippery slope’ would be created towards comparable alterations to the nuclear genome.”
That is an understandable fear, but he went on to make a very important point:
“However, we are only talking about the use of these techniques in the clearly-defined situation of otherwise incurable mitochondrial disorders, under strict regulation.”
In 2012, the Human Fertilisation and Embryology Authority—HFEA—launched a public consultation on mitochondria replacement. It interviewed almost 1,000 people, and a further 1,800 completed questionnaires. It also organised public workshops around the UK and spoke to individuals affected by the diseases, to gauge their views. It published the results in March of this year, and found broad public support for the use of the technique.
The HFEA asked four main questions about attitudes to the gene treatment of mitochondrial diseases. When asked about attitudes to the selection of embryos based on testing, 65% of those questioned were positive or very positive, with only 8% negative. When asked about altering the genetic make-up of an egg or an embryo, 56% were positive or very positive and only 10% were negative. Attitudes to the use of genetic material from a third person showed that 44% were positive or very positive, with only 15% negative. The HFEA therefore advised the Government that there was broad support for mitochondrial replacement being made available to families at risk of passing on a serious mitochondrial disease. It also advised that if treatment were to be authorised by Parliament, it should be under certain conditions, such as its being available only in licensed clinics.
The HFEA recommendations have been widely welcomed by campaigners. For example, Dr Marita Pohlschmidt, director of research at the Muscular Dystrophy Campaign, said:
“We welcome this outcome. There is currently no effective treatment available for mitochondrial diseases, and at this time, prevention remains our strongest option. By taking forward research into pro nuclear IVF, we move towards giving women living with these devastating and unpredictable conditions the choice to bear their own unaffected children. This technique does involve a step into new scientific territory. But it is a calculated, specific step with the sole aim of preventing a potential fatal condition from being passed down to the next generation, where possible.”
We are now waiting for a decision from the Government about whether secondary legislation that will allow the techniques to be licensed for use in patients will be introduced in this parliamentary Session. It has taken years to get to this stage, and it is important that progress does not stall because families are waiting for this. Introducing regulations now will ensure there is no avoidable delay in the treatments reaching affected families once research is completed and the HFEA considers there to be sufficient evidence that the techniques are safe and effective.
I called this debate to hear an update from the Minister on the progress that she has made, and to ask when we can expect a decision, and when we can expect to see legislation.
The Parliamentary Under-Secretary of State for Health (Anna Soubry)
It is a pleasure to serve under your chairmanship, Mr Davies. I congratulate the hon. Member for Newcastle upon Tyne Central (Chi Onwurah) not only on securing the debate but on highlighting the impact of mitochondrial disease on families, and the potential of the new techniques to prevent suffering and premature death and bring hope to the many families who seek to prevent their children from inheriting these sorts of diseases in the future. The hon. Lady does everyone a service in raising the issue. It is a controversial issue, and she has asked me some direct questions.
The Government fully recognise the sensitivity of the issues, and since researchers first approached my Department in 2010 requesting that we make regulations, we have been collecting expert opinion and public views. I will be up front, and say straight away that the chief medical officer has given the issue her careful consideration in the light of the advice and the findings of the Human Fertilisation and Embryology Authority, following the consultation period. I anticipate that she will set out the Government response before the summer recess and, even with my poor mathematics, I can work out that that should certainly be within the next few weeks.
I emphasise that the Department of Health has given careful consideration to the advice and information passed to us by the Human Fertilisation and Embryology Authority on 28 March. We have also taken account of other published reviews, such as the one in 2012 by the Nuffield Council on Bioethics in its report on “Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review”.
Our considerations are being led by the chief medical officer. It is right, if we are to move forward, that she should be the person to lead on the proposals—she may reject them—and, as the CMO, to make any announcement and to be at the forefront of any decision. I am told that her considerations are almost complete.
We recognise that allowing the treatment would give an opportunity for women who carry mitochondrial disease the choice—it is important to state that if regulations are introduced, they would have a choice—to have genetically related children without the risk of serious diseases; I am grateful to the hon. Lady for giving examples of those diseases, and it is the understandable desire of many parents, especially women, not to allow them to be inherited by a child.
This issue is about giving women a choice on whether or not their DNA is put into another woman’s egg. In effect, a woman would be hijacking the batteries, because mitochondria are the batteries that provide the energy, and when they do not work, they cause these diseases. This is not about any kind of genetic engineering, about which people would rightly be concerned.
When the science and the real benefits are explained to people, and the fact that the child who is born has the same genetic background as their mother, they will see that the press have perhaps been a bit misleading in saying that, if it all goes ahead, some children will have three parents. They really will not: they will have their biological mother and father. It is simply that the batteries have been taken from another woman’s egg so that they are sure that any child does not bear some of the very serious diseases that often lead to premature death.
We recognise the concerns that have been raised about whether such techniques are a form of germline or genetic modification in human beings and about whether it would be ethical to allow them in treatment, and those considerations are important. Technically, the resultant embryo would be formed from the eggs of two women, but the genetic material that relates to the child’s characteristics would have been removed from the donor egg, so the child will have genes from the patient and her partner—in other words, from the child’s mother and father—but they will also have healthy mitochondria.
Chi Onwurah
I thank the Minister very much for the constructive form of her response and for the new information. Her point about the child not having the genetic material is very important. Will she emphasise that the process is nothing like changing the eye colour or height of the unborn child? An important point to get across is that there is no genetic modification in that sense.
Anna Soubry
I absolutely agree. I am perhaps putting the subject in simple terms, but that is how it is. This is actually about the fact that if someone is effectively carrying this particular disease, the mitochondria—the batteries that charge things—are replaced to make sure that they do not have these diseases. Because the mitochondria cannot be taken out of the mother’s egg, a donor egg has to be found. The DNA is removed from that egg and the mother’s DNA is put in—taking those good healthy mitochondria or the batteries—so that she has a healthy egg that, in due course, can be fertilised by the father in the normal way. It is absolutely right that the genetic make-up of a resultant child will be the mother’s and father’s. That does not of course guarantee that the child will have the same colour eyes as their mother, as we all know, especially me as a blue-eyed mother with two brown-eyed daughters. As ever, Mr Davies, I digress, but this is a serious matter.
I pay great tribute to researchers at the International Centre for Life in Newcastle. The hon. Lady should not hesitate to do so, whether her father was there or not, because it is a fine institution. They have been developing their groundbreaking expertise for many years. In anticipation of significant advances in this field, the Human Fertilisation and Embryology Act 1990 was amended in 2008 to introduce a regulation-making power that, if implemented, would enable mitochondria replacement to take place in treatment.
The powers are therefore there, but it is important to say that they would not be implemented in some secondary way. I understand that the matter would have to come to this place and that, in any event, there would be a debate. That is my understanding, but if I am wrong I will correct that, as you would expect, Mr Davies.
In 2010, Newcastle researchers approached the Department of Health and, in the light of their progress, requested that we consider introducing regulations to allow mitochondria replacement in treatment. In response, the Department asked the Human Fertilisation and Embryology Authority to get independent advice about the safety and efficacy of the techniques.
An expert advisory group was established, and a report was passed to the Department in spring 2011. It found that the techniques were not unsafe, but it recommended that further research be undertaken. After careful consideration of that report, the Department of Health and the Department for Business, Innovation and Skills commissioned the HFEA in autumn 2011 to undertake a comprehensive set of public consultations to identify the public’s views about and understanding of this complex and sensitive issue. That consultation was held between July and December last year. It looked at the social and ethical issues raised by mitochondria replacement, as well as addressing a range of practical regulatory issues.
In collaboration with Sciencewise, which has a key role in helping the public to understand complex scientific issues, the HFEA took many different approaches to ensure that it gathered public views on the issue. It held workshops with members of the public, tracking their views over time and in response to new information. It ran what is called a representative survey, an online public consultation, two public meetings through which interested groups and individuals could express their views, and a focus group with families who are personally affected by mitochondrial disease, because their views are extremely important.
The HFEA report was published on 28 March and was passed to the Department. It provided us with three separate strands of advice: the outcome of its public dialogue and consultation; a scientific update on the safety and efficacy of the new techniques; and the issues to consider in introducing an appropriate regulatory framework. The public consultation indicated, overall, that there is general support for allowing the treatment techniques to be used, as long as they are safe and carefully regulated.
We appreciate and recognise, however, that a range of views, not all of which were in favour of a change in regulation, was strongly expressed through the consultation. A significant response came from the religious community, which was not in favour of allowing the techniques, whereas the scientific community, bioethics groups and patient and family groups were in favour.
The expert panel, which was reconvened by the HFEA, concluded that although there continues to be nothing to indicate that the techniques are unsafe, further research on some specific aspects should be undertaken. All the recommended research is currently being undertaken either in Newcastle or Oregon in the United States. The expert panel expressed the view that insufficient research is currently available to recommend one particular technique above another. It also recommended long-term follow-up monitoring of any children born as a result of the techniques.
I conclude where I began by saying that we anticipate that the CMO will announce the Government’s response very soon—before we break for the recess—which is at least some good news. As the hon. Lady said, the issue has been ongoing for several years, so it is important to find out whether it will reach the sort of conclusion that she wants, and we anticipate that that will be very soon.
Oral Answers to Questions
Chi Onwurah Excerpts(11 years ago)
Commons ChamberRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Norman Lamb
I understand that the manufacturer of ataluren has applied for conditional approval from the regulatory authorities. We await the outcome of that process, but I am afraid that I cannot give a time scale for it.
Chi Onwurah (Newcastle upon Tyne Central) (Lab)
Eculizumab is a high-cost drug that makes a profound difference to the lives of people with a rare kidney disorder, yet the Department has rejected the recommendation of the Advisory Group for National Specialised Services to make it available to all patients, instead referring it to the National Institute for Health and Clinical Excellence, which will delay any decision by at least a year. Will the Minister meet me and specialists from my Newcastle constituency to discuss how we can ensure those patients are not adversely affected by this delay?