As Shadow Minister for Public Health, Sharon responded in a Westminster Hall debate on Orkambi and Cystic Fibrosis on behalf of the Opposition.
During her speech, Sharon called on the Government to work with the drug company, Vertex, and NHS England to ensure that Orkambi can be available free on the NHS so that the thousands of patients who can benefit from the drug no longer have to suffer.
You can read the full debate here: Orkambi and Cystic Fibrosis
You can watch Sharon's speech here on Parliament TV: Orkambi and Cystic Fibrosis
You can read Sharon's full speech below:
Mrs Sharon Hodgson (Washington and Sunderland West) (Lab):
It is a pleasure to serve under your chairmanship, Sir Roger. I thank the hon. Member for Sutton and Cheam (Paul Scully) for his excellent opening speech, and I thank the 114,000 people who signed the online petition to enable us to debate it. As we have heard, the petition received more than 107,000 signatures in just 11 days—probably a record for such a petition—which shows how important Orkambi is to people with cystic fibrosis and their families.
I also thank my hon. Friend the Member for Dudley North (Ian Austin) for his sterling campaigning on this issue over a number of years, for his passionate speech and for organising the excellent roundtable in Parliament. I was unable to attend the roundtable, but a member of my staff took extensive notes and briefed me fully. I also thank all hon. Members who spoke in the debate. I was going to list them all, but so far there have been 23, and with me and the Minister that will make 25, so I will save everyone from the roll-call. Indeed, at the start of the debate it was standing room only, which shows the strength of feeling on this issue across the House. We have heard very moving accounts about family members and constituents, and that alone should be more than enough to make the case for Orkambi to be made available on the NHS as soon as possible. Finally, I thank the Cystic Fibrosis Trust for its continued “Stopping the Clock” campaign and for all the work that it does to support people with cystic fibrosis.
As we have heard, cystic fibrosis affects about 10,400 children and adults in the UK today. It affects one in 2,500 people, and one in 25 of us carries the gene that causes it. It is a life-shortening genetic condition, with the median survival for an individual with cystic fibrosis currently at just 47 years. Patients with cystic fibrosis therefore have to spend three to five hours every day on aggressive and indiscrete physiotherapy, and need nebulised treatments and strong antibiotics just to keep well. The medicines tackle the symptoms of cystic fibrosis rather than the root cause. That is why new precision medicines such as Orkambi will change cystic fibrosis care for the better.
Kalydeco is the first precision medicine used in this country for people with cystic fibrosis. It has transformed the lives of those receiving it. Patients report no longer needing a tank of oxygen to support their breathing, and greater health stability, so that they can plan their lives more securely. Some are taken off the transplant waiting list, as their clinical status improves dramatically. However, it works for only one in 20 people with cystic fibrosis. In comparison, Orkambi works for eight in 20 people. About 50% of individuals with cystic fibrosis in the UK have the genetic mutation that Orkambi tackles, so the approval of Orkambi for use on the NHS could benefit about 5,200 people living with cystic fibrosis.
Orkambi has been shown to slow decline in lung function by 42% and cut the number of infections requiring hospitalisation by 61%. It gives patients not only more control over their lives but a greater quality of life. Orkambi is available for patients in nine other countries: Austria, Denmark, France, Germany, Luxembourg, the Netherlands, Italy, Greece and the United States. Yet here in the UK, NICE has deemed it to be cost-ineffective, and at least two and a half years after being approved for use it is still not available for cystic fibrosis patients on the NHS. I welcome reports that, after over a year of waiting, dialogue between the drug company Vertex, NHS England and NICE has reopened, and that last month Vertex announced it had proposed a new portfolio approach to the Government on the funding of Orkambi.
I would be grateful if the Minister would elaborate on that in his response and tell us whether the Government are considering the offer seriously. I understand that some hon. Members may have had an update email from Vertex this morning, although I did not; there may be news on that front. I would also appreciate it if the Minister would acknowledge that, given the example of Orkambi, more needs to be done to change how drugs for rare long-term conditions are assessed by NICE. The longer patients go without those precision drugs, the longer they go on suffering irreversible lung damage. That is why we need urgent change.
Mr Paul Sweeney (Glasgow North East) (Lab/Co-op)
Many hon. Members have referred to the Scottish Medicines Consortium. Of course, healthcare in Scotland is a devolved issue but the issues are the same: there is still a two-year wait to get the matter through. Does my hon. Friend agree that there is a need for a closer working relationship between NICE and the SMC? Perhaps sometimes, with collective bargaining, a deal on price could be reached sooner.
Absolutely, I agree. I do a lot of work, as the Minister does and has done in the past, on access to cancer drugs. The same can be said in that context—that it is a postcode lottery not just within nations but between the nations, and that it need not be. The issue could be explored further.
NICE considers all the different benefits that a treatment could give, including living longer, but also having a better quality of life. That is hard to establish for some rare long-term conditions such as cystic fibrosis, making it hard for drugs to meet NICE’S requirements. There is a need for high-quality data on treatments, so that an accurate quality-adjusted life year model can be created. However, that is very difficult to achieve in short trials, particularly for rare long-term diseases such as cystic fibrosis, where “powering” a trial with enough patients is very difficult. People with long-term conditions often score their quality of life more highly than people who have developed acute conditions after being well, often because of differences of perception. If, during trials, people score their quality of life as high prior to treatment, subsequent quality-adjusted life year gains are lower.
The cost of developing a treatment for a rare disease is also high. Understanding the condition, developing an effective treatment and running the required trials in a small population is expensive. Treatments often have no competitors, so there is dampening of market forces, with negative consequences for the consumer or payer. NICE found that Orkambi was important and effective, but that the cost was too high. Vertex must therefore work as a matter of urgency to bring down the cost of Orkambi, so that thousands of cystic fibrosis patients can benefit from the drug on the NHS. The Opposition are committed to ensuring that all NHS patients get fast access to the most effective new drugs and treatments.
In response to the online petition, the Government responded:
“We want patients to benefit from clinically and cost effective treatments.”
What steps are they taking to bring that about? NICE’S guidance on Orkambi is scheduled to be reviewed in July 2019. Will the Government work with Vertex, NICE and NHS England to ensure that the review is brought forward so that thousands of patients can benefit much sooner from the drug on the NHS? It is clear from today’s debate that we need more and better treatments for cystic fibrosis in the UK. Last year, half of all people who died with cystic fibrosis were under the age of 31. It is unacceptable that while pharmaceutical companies, NHS England and NICE barter, people’s lives are at stake. The Government must therefore take responsibility for negotiating an agreement as soon as possible. I hope that the Minister will take on what he has heard today. I hope he will acknowledge how important it is to find a solution that guarantees that the current situation affecting the pipeline of treatments for cystic fibrosis will never happen again, and that thousands of patients will get access to the most effective drugs and treatments as soon as possible.
As Shadow Minister for Public Health, Sharon responded in a Westminster Hall debate on Orkambi and Cystic Fibrosis on behalf of the Opposition. During her speech, Sharon called on the... Read more
Government Call for Evidence.
The Government has recently launched a consultation on how to improve safety for all road uses and boost active travel.
Government Call for Evidence. The Government has recently launched a consultation on how to improve safety for all road uses and boost active travel. Read more
Although this letter was not addressed to Sharon Hodgson MP directly, Sharon asked Rolton Kilbride (via Coast Communications) if they were agreeable for her to publish this letter on her website for balance (as other letters have also been published here), and to answer some constituents' concerns and clear the matter. Rolton Kilbride agreed to this (15/03/2018 via Coast Communications).
Although this letter was not addressed to Sharon Hodgson MP directly, Sharon asked Rolton Kilbride (via Coast Communications) if they were agreeable for her to publish this letter on her...
As the Chair of the All-Party Parliamentary Group on School Food, Sharon spoke in a debate on the Government's proposals to introduce a £7,400 net income threshold for families on Universal Credit and eligibility for free school meals. In her speech, Sharon raised concerns that the threshold would see over 1 million children in poverty miss out on a free school meal.
You can read the full debate here: Universal Credit and Free School Meals
You can read Sharon's full speech below:
Mrs Sharon Hodgson (Washington and Sunderland West) (Lab):
These regulations will affect millions of families up and down the country, so it is only right that we are able to discuss them today. The Government consulted from November to January on introducing an earnings threshold that would restrict free school meals to families with net earnings under £7,400 per annum. The consultation received 8,981 responses. However, the Government excluded 8,421 of those responses from their analysis, meaning that fewer than 4% of respondents agreed with the Government. Surely that goes against every rule of public consultations. Talk about statistics being used against vulnerable people!
In 2010, the then Secretary of State for Work and Pensions promised in the White Paper on universal credit that it would
“ensure that work always pays and is seen to pay. Universal Credit will mean that people will be consistently and transparently better off for each hour they work and every pound they earn.”
Stephen Timms (East Ham) (Lab):
I am glad that my hon. Friend has picked out that point. She will have heard the Secretary of State saying that jobcentres would advise people not to take extra work or to get a pay rise because they would end up worse off. Is that not absolutely contrary to the whole principle of universal credit that she has just read out?
Yes, absolutely. We know that the Government are today reneging on the former Secretary of State’s commitment.
Free school meals are worth far more to a family than £400 a year per child. That might not seem to be a lot to some hon. Members, but to those families it is an absolute lifeline. By introducing a £7,400 threshold for eligibility, the Government are forcibly creating a cliff edge that will be detrimental to families, especially children. To give just one example, someone with three children in their family who earns just below the £7,400 threshold is set to lose out on £1,200-worth of free school meals if they work only a few extra hours or get a pay rise. The Opposition’s proposal would simply remove the huge cliff edge and the work disincentive for families who most need support. It would take away the barrier to working extra hours or seeking promotion. Our proposals would therefore make work pay. The Government’s proposal is in fact the new 16 hours, which they said was a disincentive.
Mike Hill (Harlepool) (Lab):
Is my hon. Friend aware that in Hartlepool, where universal credit is not being rolled out—it is already in—more than 1,000 children are being denied free school meals on the basis of the new proposal?
Yes. We can all cite the numbers from our constituencies. Even Conservative Members need to think about what they are doing to some of the poorest children in their constituencies. In the example I just quoted, the family’s annual wages would need to increase from £7,400 to almost £11,000 to make up for what they would lose by rising above the eligibility cliff edge. That problem did not occur under the old tax credit system, because that provided an offsetting income boost at the point at which free school meals were withdrawn. However, there is no equivalent mitigation under universal credit.
The Children’s Society has been much maligned today and has been cited as giving duff statistics—Conservative Members should be ashamed of themselves. It estimates that the cliff edge will mean that a million children in poverty will miss out on free school meals once universal credit is fully rolled out. They will miss out on something that is crucial for their physical and mental development.
The Government have said that 50,000 more children will benefit by the end of the roll-out in 2022, when the transitional protections are at capacity, but I and many others struggle to understand how that can be the case. Parliamentary questions tabled by my hon. Friends and others have gone unanswered, and the Government cannot just pluck figures out of the air, as they claim so many others have done. At least we can back up our claims with evidence from the Children’s Society, Gingerbread, the Child Poverty Action Group and Citizens Advice, all of which agree that this statutory instrument would take free school meals away from a million future children—[Interruption.] It would. If the SI does not come into force, a million more children will receive free school meals—[Interruption.] Conservative Members can shake their heads all they like.
During my recent Westminster Hall debate, I offered Ministers a solution that would mean that all children in universal credit households would continue to receive free school meals. As somebody asked earlier, I can say that it would cost half a billion pounds—not a huge cost to feed over a million of the poorest children. My proposal would see around 1.1 million more children in years 3 and above from low-income families receiving free school meals compared with under this change.
Heidi Allen (South Cambridgeshire) (Con):
If we were to maintain free school meals for absolutely everybody on universal credit, does the hon. Lady think it would be right to prioritise those coming from the legacy tax credit system, who could be earning up to £50,000 a year, instead of opening up eligibility and getting free school meals to more children in poverty?
I am running out of time, so— [Interruption.] Perhaps Conservative Members would let me finish before they use up all my time. I was going to say that while I cannot go into the full details, because of the time, I understand from the Children’s Society that that is a small number of people—up to 40,000—and that those people are often in large families with severely disabled children. The large amount of money is down to how much they receive for those children. It is disingenuous to use that as an example and to make out that all those families are receiving £50,000.
The Minister claimed yesterday that my proposal would result in around half of all pupils becoming eligible, increasing the figure to 3.3 severely million children. Even the much-cited Channel 4 FactCheck article states that our proposal would extend to 1.1 million children, making the total 1.8 million children. When we talk about facts, Conservative Members need to get their facts right. Where do the extra 1.5 million children come from?
As the Chair of the All-Party Parliamentary Group on School Food, Sharon spoke in a debate on the Government's proposals to introduce a £7,400 net income threshold for families on... Read more
Click on the image above to download the letter.
Sharon receives a response from Dr Thérèse Coffey MP, Parliamentary Under-Secretary of State for the Environment. Click on the image above to download the letter. Read more
Sharon met with Sarah in Parliament, to hear first-hand her experience of being a Business Apprentice and to celebrate National Apprenticeship Week 2018, which runs from 5 to 9 March.
Co-ordinated by the National Apprenticeship Service, National Apprenticeship Week 2018 is the 11th annual week-long celebration of apprenticeships in England and is designed to celebrate apprenticeships and the positive impact they have on individuals, businesses, local communities and the wider economy.
During the Week employers and apprentices from across England will come together to celebrate the success of apprenticeships whilst encouraging even more people to choose an apprenticeship as the pathway to a great career.
“It is great to meet apprentices here in Parliament. Apprenticeships are so important to those undertaking them – giving them the skills they need to succeed in life and in a role they want to progress in – and to employers, giving them the opportunity to mould and shape the workforce they need.
“I am delighted to support National Apprenticeship Week this year, and pay tribute to employers who are contributing to local economies through apprenticeships whilst demonstrating that apprenticeships work for individuals, employers, and the community.’’
Sharon met with Sarah in Parliament, to hear first-hand her experience of being a Business Apprentice and to celebrate National Apprenticeship Week 2018, which runs from 5 to 9 March....
Read Sharon's latest Sunderland Echo column below or by going to the Sunderland Echo website.
Today marks International Women’s Day; a day to celebrate the success of women around the world but also a day to reflect on how far we still have to go.
This year’s theme is #PressForProgress, which aims to motivate and unite friends, colleagues and whole communities to think, act and be gender inclusive.
It is no doubt that days like today still need to exist, even in 2018.
Despite making up 51% of the population, women are still outnumbered in almost all professions.
In the House of Commons, there are twice the number of men than women elected in Parliament, and at the current rate of progress it will take 50 years to achieve gender equality in Parliament. In a 100 years since some women got the right to vote, I am the only Sharon elected since 1918, compared to 403 men named John in the same period.
Similarly, a FTSE 100 CEO is more likely to be named David than be a woman, and will earn on average 77% more than their female counterparts.
If these high profile positions cannot practice and promote gender equality in the workplace, then it is difficult to expect others to follow.
That is why the Government must therefore take decisive action to ensure that companies deliver on gender equality in the workplace, and take steps to encourage gender equality in Parliament.
This is something Labour have been championing for many decades now, and I am proud to be one of the 119 female Labour Party MPs sitting in the House of Commons today, making up 45% of Labour MPs.
To #PressForProgress, I will be building on the past achievements of Labour women who have come before me and pushing for full equality and protection of women: financially, in the workplace, in families and homes and in public spaces.
Read Sharon's latest Sunderland Echo column below or by going to the Sunderland Echo website. Today marks International Women’s Day; a day to celebrate the success of women around the...
Sharon Hodgson, Labour MP for Washington and Sunderland West and Shadow Public Health Minister, and Cold Feet actress Fay Ripley have joined forces this March to help Marie Curie provide care and support to more people living with a terminal illness.
Sharon Hodgson MP and long-term Marie Curie supporter Fay were pictured together with Marie Curie Nurses, Victoria Shodeko and Victoria Oluwalogbon, at a parliamentary event held last week to celebrate the launch of the Great Daffodil Appeal, Marie Curie’s biggest annual fundraising campaign.
Marie Curie’s daffodil pins are now available from volunteers and shops on high streets across the country. With demand for Marie Curie services growing, as more people die each year, the charity hopes that this March, more people than ever will give a donation and wear the iconic yellow flower.
The money raised will help the charity be there for more people living with any terminal illness, providing them and their loved ones with vital care and support at the most difficult time of their lives.
Sharon pledged her support to the appeal and is encouraging local people to help the charity raise more money than ever before by simply giving a donation and wearing a Marie Curie daffodil pin.
‘‘It was a pleasure to join Fay Ripley, Victoria Shodeko and Victoria Oluwalogbon in Parliament to help launch Marie Curie’s annual Great Daffodil Appeal.
Unfortunately, it is extremely likely that we will all know someone who has been or will be affected by a terminal illness, so the support that Marie Curie provides is absolutely vital.
Making a donation, and wearing a daffodil pin are small individual ways in which we can make a larger collective difference to people’s lives. I look forward to seeing many of them when I am out and about, and supporting Marie Curie’s work in the future.’’
Fay Ripley, who is best known for her role in the ITV series Cold Feet and also as a recipe author, said during the event:
"I’m delighted to be here with Sharon to help launch Marie Curie’s annual Great Daffodil Appeal.
Chances are, we all know someone who’s been affected by a terminal illness, so it’s absolutely crucial that families have the care and support they need at such a difficult time.
I hope that as many people as possible wear a daffodil this March and understand that in doing so, they are making a huge difference for people living with a terminal illness and their loved ones.”
Sharon Hodgson, Labour MP for Washington and Sunderland West and Shadow Public Health Minister, and Cold Feet actress Fay Ripley have joined forces this March to help Marie Curie provide...
Sharon Hodgson, Labour MP for Washington and Sunderland West and Shadow Minister for Public Health, supports launch of new All-Party Parliamentary Group on Breast Cancer report which finds concerning geographical variation in NHS services.
Sharon has called for an end to the stark inequalities in breast cancer diagnosis and care across England, following the launch of a new report by the All-Party Parliamentary Group on Breast Cancer (APPGBC) – and supported by leading charity Breast Cancer Now.
The landmark report – launched in Parliament on Tuesday 27th February – uncovers the true extent of the ‘postcode lottery’ in breast cancer diagnosis and care across England, with women in worst-affected areas found to be more than twice as likely to die from breast cancer under the age of 75 than those elsewhere in the country.
Following a year-long inquiry (October 2016 - November 2017), which gathered evidence from NHS leaders, clinicians, patients and charities, the report found that while overall outcomes for breast cancer are improving, stark geographical inequalities exist across England in screening, early detection and access to treatment and services.
“As the former chair of the APPG on Breast Cancer at the time this report was initiated, I was very pleased to attend the launch of their report into geographical inequalities in breast cancer. These widespread differences in the diagnosis, treatment and care of women with breast cancer, based on where they live, are shocking. It was incredibly moving to hear from speakers at the event just how difficult it can be for breast cancer patients to get the support they need.
“It’s so important to attend routine mammograms so that we can detect breast cancer as early as possible to give women the best chance of survival.
“While such variation across the region exists, we’re falling short of the Government’s ambition of world-class outcomes for all cancer patients, and we call on NHS England and Public Health England to do all that it can in working with the Northern Cancer Alliance to ensure they receive the support they need to meet this challenge.”
Baroness Delyth Morgan, Chief Executive at Breast Cancer Now, which supported the inquiry, said:
“These are really concerning findings. While overall, more women are surviving breast cancer than ever before, this crucial report uncovers variation in breast cancer services on a major scale.
“With patients and healthcare professionals alike already feeling the impact of the workforce shortages across the country, this alarming report must now act as a wake-up call. All women with breast cancer deserve the best possible chance of surviving and living well, no matter where they live, their age or the colour of their skin.
“This report shows too many women miss out on the best breast cancer care this country has to offer. We urge NHS England and Public Health England to take immediate action to ensure all women in the North East and across the country receive fair access to the care, treatment and support they need.”
Sharon Hodgson, Labour MP for Washington and Sunderland West and Shadow Minister for Public Health, supports launch of new All-Party Parliamentary Group on Breast Cancer report which finds concerning geographical...
Sharon Hodgson MP's report - Feb-Mar 2018 number 102 Click on image above to download Read more