Cystic Fibrosis Drugs: Orkambi

Luke Hall Excerpts

Monday 10th June 2019 Westminster Hall

[Paul Scully]

I am grateful to the hon. Lady for pointing that out.

[Luke Hall (Thornbury and Yate) (Con)]

rose—

[Paul Scully]

I am just about to conclude. My hon. Friend the Member for Burton (Andrew Griffiths) made an interesting point. In order not to top the record, I will be finishing very soon.

--- Later in debate ---

[Luke Hall]

It is absolutely devastating that we are having a debate in Westminster Hall again about an issue that still has not been resolved. I thank my hon. Friend for his commitment to it. He opened the previous debate, when the Chamber was completely full, and he has opened this debate fantastically well. Does he agree that the message that should go out from this debate is that a permanent deal must be agreed with Vertex as soon as possible? We cannot rely on buyers’ clubs or any other mechanism.

[Paul Scully]

My hon. Friend is absolutely right.

Oral Answers to Questions

Luke Hall Excerpts

Tuesday 26th March 2019 Commons Chamber

[Matt Hancock]

Yes, of course I will. I understand exactly where that process has got to. It concerns a different drug from the one in the question, but it is also a very important consideration for a number of people.

[Luke Hall (Thornbury and Yate) (Con)]

Will the Secretary of State agree to or consider temporary interim access to Orkambi while the negotiations continue, and has he had any discussion so far on that subject?

[Matt Hancock]

I am happy to consider all options that can secure access in a way that provides value for money based on an objective assessment of what is clinically right. That is the basis of our discussions.

Oral Answers to Questions

Luke Hall Excerpts

Tuesday 27th November 2018 Commons Chamber

[Jackie Doyle-Price]

I commend the hon. Lady for her leadership on the issue, and she is right that this is one of the most significant public health interventions we can make at the earliest point in life. I will happily line up with her to do more to champion breastfeeding, and there is certainly a lot further to go, not least in ensuring that society is more tolerant of the practice and that women really do enjoy their right to breastfeed.

[Luke Hall (Thornbury and Yate) (Con)]

7. What steps he is taking to tackle childhood obesity.

[The Parliamentary Under-Secretary of State for Health and Social Care (Steve Brine)]

In June we published chapter 2 of our child obesity plan, which built on the world-leading measures we introduced in 2016, including bold new measures to halve child obesity by 2030.

[Luke Hall]

Will the Minister join me in welcoming the launch this week of South Gloucestershire Council’s Reach programme? It is an evidence-based service for obese and overweight children aged between four and 16 in South Gloucestershire and their families, aimed at improving the wellbeing of young people and building their esteem, and raising issues of weight gain between and among families.

[Steve Brine]

I certainly will; we need a collective effort to achieve the national ambition of halving child obesity by 2030, and that means we need local initiatives such as the Reach programme to support families and help them make positive lifestyle choices. I pass on my congratulations to South Gloucestershire Council on its programme.

--- Later in debate ---

[Luke Hall (Thornbury and Yate) (Con)]

T1. If he will make a statement on his departmental responsibilities.

[The Secretary of State for Health and Social Care (Matt Hancock)]

This month, we launched our vision for the prevention of ill health that sets out measures to help increase life expectancy by at least five years because prevention is better than cure. We need to give people responsibility for their own health, while empowering them to make the right decisions in the right way. We are also saving more than £1 billion on the NHS drugs budget and committing more than £3.5 billion to primary and community care. Next month, we will publish the long-term plan for how we spend the extra £20 billion committed to the future of the NHS.

[Luke Hall]

19 November marked the three-year licence of the cystic fibrosis drug, Orkambi, in the UK, which is still not available on the NHS. Will the Secretary of State confirm whether there has been any further consideration to provide interim access to this treatment for patients, such as my constituents Annabelle Brennan and Cameron Jameson, while these negotiations continue?

[Matt Hancock]

The NHS and the National Institute for Health and Care Excellence have written to Vertex, the company involved. I am determined to see progress. We have made the largest ever proposal to Vertex, at half a billion pounds. It needs to engage with this very generous offer, which will mean that everyone wins, most of all those suffering from this awful condition. The ball is in Vertex’s court.

 Orkambi and Cystic Fibrosis

Luke Hall Excerpts

Monday 19th March 2018 Westminster Hall

[Luke Hall (Thornbury and Yate) (Con)]

I am delighted to have a chance to speak in this debate, Sir Roger. I thank my hon. Friend the Member for Sutton and Cheam (Paul Scully) for securing it. When it was initially scheduled by the Petitions Committee, they probably had no idea about how timely it would be three days after the announcement that a deal has not been reached. I thank my hon. Friend for his work. I know he has worked with the CF Trust to learn more about cystic fibrosis. I also thank the CF Trust for all the work it has done not only in setting up the roundtable and for spending time with me speaking about CF, but for what it has done to educate all Members.

[Paul Scully]

Because of the nature of the disease and the fact that there are only 70,000 sufferers around the world, the CF Trust has 99% of the entire clinical diagnostic information of sufferers around the world, which is a good resource to be able to feed back into future treatments. Will my hon. Friend pay tribute to that?

[Luke Hall]

Absolutely—that example highlights the positive work that the Cystic Fibrosis Trust is doing. I want to put on record my thanks and appreciation to all the parents and campaigners, whom I find completely inspirational. Not only are they parents, which is challenging enough in itself sometimes, but they are parents of children with CF, and on top of that they manage to find time to lobby their MPs, to get groups of people together, and to get support for petitions and debates such as today’s.

[James Heappey (Wells) (Con)]

My hon. Friend speaks eloquently about the many parents and children who have been campaigning for this cause. I add to them the voice of Helen Mann, my constituent, who has written the most wonderful, compelling book about her daughter’s life with cystic fibrosis and, indeed, her treatment with Orkambi. Her daughter, Clara, came to knock on my door yesterday lunchtime to make sure that I came to today’s debate. It was amazing to see her stood on my doorstep so full of life—a living example of just what an amazing drug it is, and how many others could benefit if only it were available to all.

[Luke Hall]

I pay tribute to all the young people such as Clara who are getting involved and making a difference in the campaign to ensure that Orkambi is available.

I was probably as disappointed as every Member in the Chamber to read the statements that came out on Friday about how a deal on the February offer by Vertex had not been reached. The petition for today’s debate was signed by 470 people from my constituency. I am here speaking on their behalf, and on behalf of Annabelle Brennan, and her parents Elizabeth and Shane. Annabelle is three years old, and is a lovely young girl. I met her at a CF campaigning event in my constituency. She does things that other three-year-olds do, of course, but she also has to endure a complex daily routine of physiotherapy, nebulisers, medication and antibiotics to help her to manage and live with the illness.

I received an email from Annabelle’s nursery leader, who is also my son’s nursery leader, explaining that Annabelle’s time at nursery, and her interaction with the other children in the group, is affected by her condition, because she is under constant supervision and is not always able to be involved in all the activities like the other children. Every winter, there is an added risk of further infection due to the common cold, and, as time passes, the potential for more complications increases. I remember hearing a devastating description from Annabelle’s parents of how every day is like waking up on a cliff edge, not knowing when irreparable damage caused by CF will come. That highlights the importance not only of these debates and the pressure, but of getting a deal, so that Orkambi can be made available as quickly as possible. That would ensure that children such as Annabelle, and people living with CF throughout the country, can realise their full potential.

A number of colleagues have laid out evidence today that shows that Orkambi works. We heard about Carly’s story from the hon. Member for Dudley North (Ian Austin)—I thank him for all he has done. We have seen international examples of the difference that Orkambi has made, but the reality is that progress on reaching a deal has been devastatingly slow. We know that Orkambi can help about 50% of people with CF. The other point we should remember is that precision medicines such as Orkambi are not just the better option—for some people, they are the only option. People have stated the countries around the world where it is already available: Austria, Germany, France, Ireland, Italy, the USA, Luxembourg, the Netherlands, Greece, Denmark, and many more. Despite the prevalence of CF in the UK, it is still not available here.

The set of statements released on Friday was disappointing, but although an agreement has not been reached, that must not be the end of those discussions; they should continue, ensuring that a deal is reached as soon as possible. It is also important that NHS England ensures that any deal is sustainable in the long term, and flexible enough to enable us to take into account any future advances in CF medication, either by Vertex or another company. The aim of NHS England and the National Institute for Health and Care Excellence should be to negotiate the best possible long-term access for people living with CF. That has to be reflected in the deal.

I ask the Minister to convey to both Vertex and NICE the importance of ensuring that a deal is reached as quickly as possible, and I encourage him to take a seat round the table himself, so that Annabelle and other people around the country have access to these drugs. I also ask him to update us on what conversations his Department has had with NHS England and Vertex since the announcement on Friday to see where progress is likely to be made in the coming weeks and months. I finish by saying to the Minister, NHS England and Vertex, “Can we please ensure that a deal is reached as quickly as possible, because this drug has the potential to change thousands and thousands of lives?”

Oral Answers to Questions

Luke Hall Excerpts

Tuesday 6th February 2018 Commons Chamber

[Luke Hall (Thornbury and Yate) (Con)]

3. What steps he is taking to integrate local health and social care services.

[The Minister of State, Department of Health and Social Care (Caroline Dinenage)]

The fact that the Department has been renamed the Department of Health and Social Care reflects both their interdependence and our commitment to achieve co-ordinated care tailored to individual needs. The better care fund is a national integration programme that helps the NHS and local government to deliver better, more joined-up services.

[Luke Hall]

I thank the Minister for that answer and welcome her to her place. The proposal to build a community health centre in Thornbury and Frenchay is an essential part of joining up health and social care in South Gloucestershire. Will the Minister join me in highlighting the importance of Thornbury health centre and in pressing South Gloucestershire clinical commissioning group to make progress with the project as quickly as possible, after years of unnecessary delays?

[Caroline Dinenage]

I thank my hon. Friend for raising that important issue. He is right to do so, and proposals such as those for Thornbury health centre are crucial for ensuring that health and social care are truly integrated and centred around each individual in the community. I am advised that South Gloucestershire CCG remains committed to progressing those plans as soon as possible and that the local NHS expects to be able to provide an update on plans next month.