Accelerated Access Review

Debate between Lord Austin of Dudley and Peter Dowd

Tuesday 13th December 2016 Westminster Hall

[Ian Austin]

The hon. Lady is completely correct. It is good that she is here in the Chamber, making these important points.

Vertex is also keen to explore flexible reimbursement schemes, which would allow the NHS to manage the overall budget impact of the treatment. However, the inflexible current system insists that any offer has to be made public, rejects the trust’s solutions and offers no scope for flexible reimbursement schemes. That brings me to the accelerated access review, which was commissioned to speed up access to innovative new drugs and treatments such as Orkambi. The review was finally published in October, after a long delay, and recommends that NICE reviews its processes. It calls directly for the current system to change, to include more emphasis on the confidential commercial arrangements, flexible reimbursement arrangements and collection of real-world data that I and other Members have referred to. Those recommendations could be the key to reaching a deal that delivers Orkambi to those desperate to receive it.

When the review was commissioned last year by the Minister’s predecessor, the hon. Member for Mid Norfolk (George Freeman), he spoke of how accelerating the uptake of transformational technologies in the 21st century would attract investment in research and innovation to help us earn the prosperity we need as an advanced economy. When the review was published in October, NHS England’s chief executive, Simon Stevens, said that creating headroom for faster and wider uptake of important new patient treatments would create opportunities for the UK’s globally successful life sciences sector. The failure to deliver Orkambi undermines that vision.

We have a rigid and inflexible system, and warnings that it is not fit for purpose have been ignored throughout the process. Instead of embracing the opportunity for an innovative solution, we have been offered further negotiations based on criteria that have already failed once. That is a waste of time and taxpayers’ money and sends completely the wrong signal to a global life sciences industry currently questioning future investments here in the UK. Hugh Taylor, the review’s chair, set out the need for commitment and collaboration across Government, the NHS and the life sciences industry to make the review’s proposals a reality.

The review sets out criteria for transformational treatments that should be fast-tracked for access. Orkambi meets those criteria. It presents the perfect opportunity to put many of the review’s proposals to the test, to illustrate the commitment and collaboration needed and to demonstrate how we can come together and adapt in the light of new information. It is predicted that 95% of people with cystic fibrosis could benefit from a personalised medicine within five years. Coming up with a solution for Orkambi—one that makes sense to the NHS as well as reflecting the investment that goes into these treatments—will give us a genuine opportunity to beat this condition.

I am sure people will benefit from the review’s proposals in the years to come, but that must not be at the cost of Orkambi, which is available now. Many people with cystic fibrosis, as well as their families and carers, such as my constituents Carly Jeavons and Samantha Carrier, are watching this debate. Many of them are forced to spend weeks and months of each year in hospital, and most of all they want a chance to be able to do the everyday things we all take for granted, such as raising a family, planning a holiday or breathing without struggling. They have already endured needless delays, and as time goes on those delays present an obstacle to investment in future treatments to beat cystic fibrosis. That is not the vision set out by the accelerated access review.

[Peter Dowd (Bootle) (Lab)]

Muscular Dystrophy UK is calling, among other things, for ring-fenced, protected funding for rare diseases. That was not included in the review to which my hon. Friend refers. Does he feel that that possibility should at least be considered as a way forward at some point?

[Ian Austin]

That is a really good point, and I am pleased that my hon. Friend raised it. I am sure the Minister will want to respond to that.

Tragically, we have to face the fact that many people are dying now. They do not have time to wait for the Government to respond to the review or for NICE to enter a lengthy consultation on its processes. They want to see the Government get on with exploring how Orkambi can reach those who need it without delay. If the Government create the conditions for constructive negotiations, the manufacturers will play their part, just as the Government themselves need to be flexible in order to deliver transformational treatments such as Orkambi.

I would like to ask the Minister the following questions. Does he think it is right that people in this country are considering moving to France or Germany in order to save their children’s lives by giving them Orkambi, which is now proven to halt the progression of their children’s decline? What does that say about a Britain trying to project its place as being at the cutting edge of the life sciences sector? Will the Minister provide assurances to people watching today that the Government are listening, and that everything possible will be done to explore progressing the negotiations on Orkambi in 2017? Will he reassure them that we are capable of finding a solution next year that will bring an end to this cruel and unnecessary wait?

Will the Minister seek guidance from Government, NICE and NHS England on how the recommendations in the accelerated access review can be used to break the deadlock in negotiations? Will he meet Vertex and the Cystic Fibrosis Trust to discuss that? Samantha Carrier points out that in the 1970s, the life expectancy of cystic fibrosis sufferers was only five years old. Thankfully, that has increased greatly, but the rules for free prescriptions have not moved. When people become 18, they have to pay for their medication, despite the fact that they need these drugs to stay alive. Will the Minister look at that issue?

This is exactly how Parliament and politics in our country should work. It is our job to listen to our constituents and come here to stand up and speak out on their behalf. People like Carly Jeavons struggle to work or spend time with their family and do other things that the rest of us take for granted because they have to undergo hours and hours of treatment. New treatments have helped Carly, but others are missing out on these new drugs at the moment. People like Sam and Rob are having to come to terms with what this condition means for their newborn child, at the same time as having to care for her. All three of them—Sam, Rob and Carly—are devoting hours to raising funds or campaigning for better treatments for people with cystic fibrosis. They are an inspiration to us all; will the Minister meet Carly Jeavons, Samantha Carrier and Rob Evans and listen to them directly?