Orkambi and Cystic Fibrosis

Debate between Bob Stewart and Crispin Blunt

Monday 19th March 2018 Westminster Hall

[Bob Stewart]

On my good friend’s excellent point, I wonder how much it costs to put a child in hospital for a month. I am pretty sure it is not far off £100,000.

[Crispin Blunt]

My hon. Friend leads me to my next point. How do we wish to value better and longer life for those with cystic fibrosis? How do we wish to value the savings to the NHS of reducing the 9,500 hospital admissions and the 100,000-plus hospital bed days a year? How do we wish to value the societal and economic benefits of helping young people grow up to play a fuller part in their education and employment, and the benefits to their families and care givers? How do we wish to value and reward the risk and innovation that goes into researching and developing breakthrough medicines?

NICE applies rigid health economics methodologies through its standard technology appraisal, which is designed not for rare diseases and specialised services but for primary care medicines that treat large populations with well-known diseases. Are we content for NICE to apply a threshold for valuing life that has not changed since it was established in 1999, even though healthcare inflation has almost tripled what we spend on healthcare?

My right hon. Friend the Member for Chingford and Woodford Green (Mr Duncan Smith) referred to social impact bonds and payment by results. I do not envy those who have to make those evaluations, such as the Minister and NICE. The costs fall on NICE and the health service budget, and the benefits are often felt elsewhere, not least in patients’ quality of life. Our society and the Government have to become more sophisticated about early investment. We must be able to measure the savings that come from having fewer hospital admissions and from the greater contribution to society that people who suffer cystic fibrosis will make if we improve their quality of life and reduce the degradation of their lungs.

Does the Minister accept that, although NICE has a specific evaluation process for highly specialised technologies for ultra-rare diseases, it is missing a framework for other rare diseases and precision medicines that treat sub-groups of rare diseases? He will no doubt point to initiatives such as the accelerated access review and the sector deal for the life sciences industry. I welcome those schemes in so far as they aim to address some of the access challenges, but they count for little if there is not a willingness to find innovative and flexible approaches to introducing innovation in the NHS. If we get this right, the UK has huge opportunities better to serve NHS patients and attract industry investment in clinical trials.

Vertex, the manufacturer of Orkambi, recently proposed a portfolio arrangement to NHS England, as we have heard from many colleagues, whereby all its current and future cystic fibrosis medicines could be made available to eligible patients at a fixed cost to the NHS, irrespective of the number of patients treated. Vertex wants to work with NHS England and NICE to put a long-term arrangement in place, as it has already done in Ireland. As the company introduces new medicines and line extensions, patients will get rapid access to the most suitable products for them upon regulatory approval, and the NHS will have budget certainty. Vertex expects to develop therapies that will treat 90% of cystic fibrosis patients within seven years.

In the light of the company’s proposal and the strength of feeling expressed in the petition and by colleagues in this debate, will the Minister look at mandating NHS England and NICE to prioritise discussions with Vertex to find an innovative and sustainable funding solution? It gives me hope that the offer that Vertex found unacceptable last Friday included a possible portfolio approach. It failed simply because NICE was not prepared to increase the resources it already pays for existing drugs, not including Orkambi. That plainly meant that the offer could only be unacceptable to Vertex, given that it is proposing new treatments that are going to treat 10 times as many patients as are being treated by the drugs currently available.

This is urgent. As my constituent, Sharon Cranfield, said to me:

“Each day of delay is additional delay of ‘irreversible lung damage’”

for those with treatable cystic fibrosis.

National Defence Medal

Debate between Bob Stewart and Crispin Blunt

Tuesday 11th November 2014 Commons Chamber

[Bob Stewart (Beckenham) (Con)]

I rise to oppose the Bill because medals mean something to those who have them. In the military they denote gallantry, operational duty, good service, or special occasions such as when Her Majesty the Queen grants a jubilee medal. For me, medals worn on the chest can rapidly sum up someone’s service. Medals mean a lot. I recall that Napoleon said, “Men will do much for a scrap of ribbon.” To the services, medals mean a lot, and the gaining of them is terribly important. Medals should not be granted for nothing, and for that reason I oppose the Bill, albeit with some reluctance.

A gallantry medal is self-explanatory, and anyone wearing one is looked on specially by his or her peers. My right hon. Friend the Member for South Leicestershire (Mr Robathan) has a brace of operational service medals. Those mean that someone has put his or her life in harm’s way for our country. Good or long-service medals are rewards for a serviceman or woman who has spent a long time and done very good work in the services, and they are richly deserved. Finally, special occasion medals are different, because servicemen and women do not consider them in the same category as the others.

My hon. Friend the Member for Reigate (Crispin Blunt), who is sitting behind me, served for 12 distinguished years in the cavalry—

[Crispin Blunt (Reigate) (Con)]

Undistinguished by a medal.

[Bob Stewart]

As he says, undistinguished by a medal. He has told me that he does not expect or want a medal; he thinks it wrong for him to have a medal for not having served operational duty in his time.

The soldiers, sailors and airmen of our armed forces wear a uniform and they are proud of that, but do we automatically put a medal on a uniform when we issue it? No. Members of the armed forces who I have talked to are unanimously against the idea of awarding a medal for nothing. That is the truth, and I oppose the national defence medal on those grounds.

I shall not call for a Division on this matter because my hon. Friend the Member for St Austell and Newquay (Stephen Gilbert) is a friend, and I understand his motives and wishes. It is Armistice day. However, I do want to register the fact that the national defence medal is not necessarily something that the armed forces or people who have served in them wish to have put on their chests without earning it.

Question put (Standing Order No. 23) and agreed to.

Ordered,

That Stephen Gilbert, Sir Menzies Campbell, Sir Bob Russell and Sir Nick Harvey present the Bill.

Stephen Gilbert accordingly presented the Bill.

Bill read the First time; to be read a Second time on Friday 5 December, and to be printed (Bill 118).