Cystic Fibrosis Drugs: Orkambi

Karl Turner Excerpts

Monday 10th June 2019 Westminster Hall

[Karl Turner (Kingston upon Hull East) (Lab)]

It is a pleasure to see you in the Chair, Mr Hanson. I am grateful to be called to speak in this incredibly important debate on behalf of my young constituent, Oliver Ward, who is seven years of age. I raised the issue in Prime Minister’s questions last week, and I intend, if I get the opportunity, to raise it with the Prime Minister again before she leaves No. 10 Downing Street.

I want to pay tribute to Oliver and to his mum, Emma Gadie, who has campaigned tirelessly on CF. In particular, she has raised the issue of the battle with Vertex for Orkambi. She says her little boy is her hero, and has described his daily routine, which includes taking up to 23 pills a day, and having incredibly rigorous physio just to be as normal as he can be during the day.

It seems to me that the situation is a perfect example of predatory capitalism. Vertex has a turnover of $45 billion, and the chief executive rakes in something of the order of £15 million a year—I think I am right in saying that he has £100 million in share sales to his name—and yet he is holding the NHS to ransom. People are literally dying while the business behaves in an intolerable way. I saw a tweet recently in which Vertex was celebrating its 30th birthday, but some sufferers do not make it beyond 31. It is utterly despicable. I try to be non-partisan and non-party political about it, but it is about time the Secretary of State got into a room with Vertex, NHS England and NICE and sorted it out.

The Prime Minister said on 16 May last year that she expected a “speedy resolution” to the situation. Frankly, the Secretary of State, the right hon. Member for West Suffolk (Matt Hancock), should spend more time sorting out this incredibly important issue than travelling around the country trying to ingratiate himself with Tory party members in order to get himself into 10 Downing Street. This is appalling. It is not going away—hon. Members on both sides of this House are not going to let it go away—and the Minister must take action following this debate.

--- Later in debate ---

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

It is always a particular pleasure to serve under your chairmanship, Mr Hanson. I thank my hon. Friend the Member for Sutton and Cheam (Paul Scully) for opening the debate on behalf of the Petitions Committee. I pay tribute to the more than 100,000 people who signed the petition, and I thank all right hon. and hon. Members who have spoken in the debate; I am sure that they will be rushing back for the wind-ups.

I have been very touched by the stories that we have heard today and the compassion shown by my hon. Friend and all hon. Members in speaking about cystic fibrosis and its physical effects, emotional effects and effects on mental health for those who live with it and for their families. It is a debilitating condition, and I know how absolutely desperate sufferers and families are for access to treatments.

I recognise the great work undertaken by the Cystic Fibrosis Trust and its strong voice in supporting families and bringing cystic fibrosis to the attention of parliamentarians. I also pay tribute to my young constituent Lucy Baxter, who was on “BBC Breakfast” this morning and who lives with cystic fibrosis. She spoke to me very soon after I became a Member of Parliament and is an absolute inspiration to me and to the whole cystic fibrosis community.

Today’s debate has been heartfelt and passionate. The stories that we have heard clearly make the case that Orkambi and other drugs for people with cystic fibrosis should be available on the NHS at a price that is fair and affordable. The Government and I share that view. As the Chair of the Health and Social Care Committee, the hon. Member for Totnes (Dr Wollaston), set out so clearly, we must remember that the NHS must use its budget fairly for the good of all patients. That is why we rightly have a system whereby experts, not politicians, determine the fair price for medicines, based on robust evidence. That system has helped many thousands of patients to benefit from rapid access to effective new medicines.

[Karl Turner]

Forgive me, but I genuinely do not know the answer to this—I find it completely confusing. If the Republic of Ireland and Scotland can get an interim agreement, why cannot we sort this out for patients here in England?

[Seema Kennedy]

I will talk about the interim measures, but I think the more important thing that we need to grip is having a permanent solution for everybody living with cystic fibrosis.

Throughout the negotiations, which are rightly being led by NHS England, the Government have been crystal clear that Vertex must re-engage with the NICE process. I know that hon. Members have questions about that process, and I will try to address some of the points that have been raised. The hon. Member for York Central (Rachael Maskell) raised more detailed points for me to consider; if I do not address them, I will write to her with more detail, but there are some points about the NICE process that I will address later in my remarks.