Cystic Fibrosis Drugs: Orkambi

Debate between Sharon Hodgson and Laura Smith

Monday 10th June 2019 Westminster Hall

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Hanson, in this very important debate. I thank the hon. Member for Sutton and Cheam (Paul Scully) for opening this debate on behalf of the Petitions Committee and for his excellent opening speech, in which he took many interventions. I thank all hon. Members for their passionate contributions. I counted more than a dozen speeches by Back Benchers, but I lost count, because I was distracted by the mouse that joined us. Given that it has been such a busy day in the main Chamber, this debate has shown how important this issue is to the House, as well as to all our constituents who have signed this important e-petition.

Access to drugs for patients with cystic fibrosis is an issue that is incredibly important to us all. I congratulate, in particular, my hon. Friends the Members for Bristol East (Kerry McCarthy) and for Jarrow (Mr Hepburn), and the hon. Member for Dudley North (Ian Austin) on their tireless campaigning on this issue, along with patients, campaigners and charities, such as the Cystic Fibrosis Trust. I commend the trust for its expert briefings and support to patients and their families over many years.

Finally, I thank the 108,144 people who signed this e-petition, 310 of whom live in my constituency. As has been said, we debated a similar e-petition in March 2018, and there have already been five parliamentary debates about access to such medicines. I hoped, as others did, that by now cystic fibrosis patients would have access to the drugs that they need and deserve. Unfortunately, that has not been the case.

Just over a year ago, on 16 May 2018, in response to a question from my hon. Friend the Member for Erith and Thamesmead (Teresa Pearce), the Prime Minister called for a “speedy resolution” to the crisis. However, the only speedy thing has been the deterioration of the health of cystic fibrosis sufferers while they wait for a resolution of the crisis.

More than 10,000 people in the UK live with cystic fibrosis, and it is thought that around 50% of CF patients could benefit from Orkambi; that is more than 5,000 people. Although that is a lot of people, in NHS terms it is a small cohort. And yet Orkambi is still not available to patients, despite being licensed for use in the UK since 2015.

The UK is currently a world leader in cystic fibrosis outcomes, but that is changing. People with cystic fibrosis are physically sicker than they would be if these medicines were available to them. NHS England continues to make offers to Vertex, including the largest ever financial commitment in its 70-year existence, but that was rejected. Since then, an even better offer has been made, but again Vertex has been unwilling to accept it.

I know that that is frustrating for patients and their families, who have waited years for access to these life-saving drugs. We are all frustrated on their behalf. As my hon. Friend the Member for Colne Valley (Thelma Walker) Valley mentioned, in March it was reported in the news that nearly 8,000 packs of Orkambi had been destroyed because they were past their sell-by date. That would have particularly stung patients and their families. Those drugs were valued by Vertex at £104,000 per patient per year. With my limited maths skills, I reckon that means that more than £60 million of drugs were destroyed by Vertex—drugs that could have been given to patients.

It is an outrage that Vertex would destroy so many packs of a life-saving drug while in a cost dispute with NHS England. So many patients could have benefited from those drugs. It was spiteful of Vertex to watch those drugs go out of date so they would have to be destroyed. In the midst of all that, Vertex reported a 40% rise in its revenues, with net income doubling in the previous quarter. I am sure I am not alone in feeling shocked and angry at that.

By refusing to play fair with NHS England, Vertex is holding lives at ransom, and patients and their families are the ones left suffering. Therefore, I was not surprised by the feature on “Newsnight” last week about parents and families establishing a cystic fibrosis buyers’ club to buy the generic drug Lucaftor from Argentina. The stress and frustration that families face because of Vertex mean that they now feel they have no other option but to take matters into their own hands.

[Laura Smith]

It is great to hear my hon. Friend’s response. It seems perverse to me that the interests of big pharmaceutical companies can hold such enormous sway in this country, to the extent that cystic fibrosis sufferers can be left without their treatment—treatment that has the potential to prolong their lives significantly.

[Mrs Hodgson]

I agree with my hon. Friend. I hope that the Minister will have some ideas about how this drug company can be held to account and not be allowed to continue in this way. I hope the Minister agrees that the situation should never have been allowed to get to this stage.

Lucaftor has the same active ingredients as Orkambi, and the Argentinian pharmaceutical company Gador is offering a price of £23,000 per patient per year, which drops to £18,000 if patients and their families can get together a group of more than 500 patients to purchase Lucaftor as a collective. That is significantly lower than the £104,000 Vertex wants for Orkambi. I say “want” deliberately—it is not the cost, but what Vertex wants. Of course, for many patients in the UK, Lucaftor will still be way too expensive to access, so it is not a feasible alternative at all. That is why NHS England and Vertex need to come to a conclusion that puts cystic fibrosis patients first, and ensures that they have access to the life-saving drugs they need and deserve.

School Funding

Debate between Sharon Hodgson and Laura Smith

Monday 4th March 2019 Westminster Hall

[Laura Smith (Crewe and Nantwich) (Lab)]

It is an honour to serve under your chairmanship in this incredibly important debate, Sir David. I am proud that nearly two years on since local parents, children, support staff, teachers, headteachers, Fair Funding For All Schools, the Labour party and I protested in Nantwich town centre and marched in our thousands on the streets of Sandbach, my constituency is still demanding answers to the crisis the Government and 10 years of austerity have inflicted on our education system. We still come in the top 10 constituencies in the country for responding to this petition, and I thank every single person who took the time to do so.

Since being elected, I have spoken many times about the funding crisis that has gripped our schools. I speak as an ex-teacher, an educational campaigner, a parent and now as a Member of Parliament and as vice-chair of the f40 group, which represents the worst-funded authorities in the country. Today I speak on behalf of all of those brave professionals who continue to stick their head above the parapet and speak honestly about life in schools. In Crewe and Nantwich, they constantly hear the misleading claim that this Government are providing more money for schools than ever before, but they know full well that they have faced real-terms cuts on a massive scale. After all, 100% of schools in my constituency have experienced such cuts. They do an amazing job at trying to deliver the best experience they can for the children and families that attend, but it is becoming an impossible task.

I regularly meet head teachers in my area, both as a collective and as individuals. Without exception, they relay the same message: they cannot shave any more meat off the bones of their budgets. They are demoralised and devastated, and they feel let down, because teachers believe that every child matters—that is a fundamental idea that should unite everybody in this place whenever we discuss education. It is the belief that every child matters that inspired me to go into teaching.

I want to focus specifically on the issue of SEND provision. It is not only the first topic mentioned by the majority of headteachers, but shows that somewhere along the line this Government lost the belief that every child matters. The f40 campaign states that the funding currently available is not enough to deliver education for the modern world. All SEND in schools has increased dramatically in recent years, including the low levels of SEN. Schools are dealing with those higher levels, an increase in pupil numbers and the increase in the cost of running a school, while their budgets have been slashed in real terms.

[Mrs Hodgson]

On the issue of SEND, I want to mention the importance of teaching assistants. UNISON, which is represented in the Gallery by its regional director in the north-east, recognises their importance. My daughter is a newly qualified teacher in her first year of teaching and has said that she has a number of children in her class with special educational needs, yet she has only one teaching assistant for a few hours. Does my hon. Friend recognise how detrimental this is to those children?

[Laura Smith]

I am very pleased to hear that my hon. Friend’s daughter is going into the profession. I cannot speak highly enough of the talents of the teaching assistants and support staff who work in schools. They are desperately needed, and we do not want to see anybody losing teaching assistants.

Just this morning, a headteacher who knew that we were having this debate got in touch with me, saying:

“At my school, budget cuts along with having to fund the first £6k for SEN pupils has forced us into a deficit budget (the first ever) and consequently into a whole school restructure situation which has left us unable to fund any general classroom support. I have had to make redundancies which has curtailed our ability to provide the broad and varied curriculum that OFSTED are now demanding. We are only able to offer teaching assistant support to pupils with EHCP’s. I have also had to cut allowances to dedicated and hardworking teachers (who have always gone the extra mile for pupils at my school) leaving them undervalued and demotivated after years of exemplary service which has kept our school one of the most consistent and respected schools in our town.”

The head continued:

“I am only asking for enough money to effectively run a school in the 21st century that supports the needs of ALL pupils not just SEN and deprived children. After all shouldn’t education offer fairness of opportunity to all?”

Minister, I am sick of empty words. I am sick of the fact that so many of my friends in the profession feel crushed. I am sick of those dedicated professionals reporting to me that their mental health is suffering and that they may leave the profession they love. I am sick of the lousy pay that they are expected to work for, while the work piles on. Most of all, I am sick of the Government’s abject disregard for the education of the many children in this country who do not attend a fee- paying school. As a parent, I am sick of the fact that those who care for and nurture my children are so demoralised. I am furious that future generations are being let down so catastrophically. Test results and attainment are a small part of what makes a successful school.

Free School Meals/Pupil Premium: Eligibility

Debate between Sharon Hodgson and Laura Smith

Tuesday 6th February 2018 Westminster Hall

[Mrs Hodgson]

Yes. One of my reasons for supporting universal free school meals is that the stigma would be removed. It was proved in the excellent school food plan commissioned under the former Education Secretary, the right hon. Member for Surrey Heath (Michael Gove), that that was one of the benefits of universal free school meals. The poorest kids, who are entitled to them anyway, are the ones who benefit the most.

[Laura Smith (Crewe and Nantwich) (Lab)]

As a teenager, I was entitled to free school meals, but because of the stigma I did not take them. I used to refuse to queue up for my token, so I went without, which resulted in my developing a very controlling relationship with food and a lot of problems at home. I totally support my hon. Friend’s proposal, because free school meals for all children will mean that they all get a healthy meal and the stigma will disappear.

[Mrs Hodgson]

I totally agree. The same system should apply for all children who are entitled to universal credit, although wider access is another debate.