Access to Orkambi

Lady Hermon Excerpts

Tuesday 17th July 2018 Commons Chamber

[Lady Hermon (North Down) (Ind)]

Will the hon. Gentleman give way?

[Mr Lewis]

I am going to make progress, if I may, but I will perhaps give way once more later on.

--- Later in debate ---

[Mr Lewis]

I agree entirely with my hon. Friend, and I will develop his argument as I continue my speech.

A quote from Emma, Alex’s mum, sums up many of the frustrations of the constituents represented here today. She says, very movingly:

“Alex has a real love for life and all she wants to do is live a long and happy live without having to fight to breathe.”

That powerful statement says it all.

Since March, when we last debated this issue, NHS England and Vertex have met on four occasions. I welcome the fact that, during those negotiations, NHS England accepted the principle of a funding agreement that supports a portfolio approach to current and future drugs. That is undoubtedly a step forward and a positive response to the contributions parliamentarians made in the initial debate, but it is clear that these negotiations have not produced an agreement that is acceptable to both parties. Indeed, the public recrimination suggests that the negotiations had all but broken down. It remains to be seen whether NHS England’s written offer, made on the eve of this debate, is a basis for progress, but the early indications are not encouraging.

It would be inappropriate for anyone to make judgments about the validity of either party’s case without having full access to the information, which remains confidential for reasons of commercial sensitivity. I know I speak for all parliamentarians when I express concern about the fact that, as my hon. Friend the Member for Dudley North said, NHS England described its offer as “final”. It could lead to a stalemate that once again lets down patients and their families. To be clear, I respect the need for an objective process that delivers appropriate medication and value for money for the taxpayer. If NICE did not exist, it would have to be invented, but—this point has been made time and again tonight—the shortcomings of the current assessment processes are well documented. That is why NHS England’s involvement in this instance is to be welcomed.

Equally, Vertex has the right to seek financial remuneration at a level that maintains its viability and supports the development of the company. Sadly, I am unconvinced that more of the same will lead to an agreement that will enable Orkambi and successor drugs to be made available to people with cystic fibrosis. Consequently—my hon. Friend the Member for Bury North suggested this—I urge the Secretary of State for Health and Social Care to facilitate an urgent meeting with the chief executive officers of NHS England and Vertex. In that meeting, they should seek to resolve any outstanding differences, and agree a rapid timescale for the roll-out of Orkambi across the country and an approach for other relevant drugs. People with cystic fibrosis have been waiting far too long.

[Lady Hermon]

The hon. Gentleman is well aware that health is a devolved matter in Northern Ireland, but we do not have a Health Minister because we have not had a functioning Assembly for 18 months. Will he join me in urging the Minister to liaise with the permanent secretary in the Department of Health in Northern Ireland to reassure the many cystic fibrosis suffers and their families, who are desperately anxious, that we have a drug available? The health service must enter into final discussions to reach the outcome we all want.

[Mr Lewis]

I agree entirely. The absence of a functioning Executive is a source of continued regret to those of us how care passionately about Northern Ireland. Progress has been made, but there is now a stalemate. It is incredibly important that, in the absence of an Executive, Ministers ensure that any solution that is reached also benefits people with cystic fibrosis in Northern Ireland.

The UK Government need to commit to a proactive role to help secure a deal as soon as possible that will ensure access to these new treatments. They must fulfil their own stated ambition for NHS patients to be

“among the first in the world to get life-changing treatments.”

Vertex, the pharmaceutical company, must be fair and responsible with pricing to ensure that a deal on access to new treatments can be agreed—and agreed rapidly. The Government must consider looking towards the future pipeline of treatments for cystic fibrosis to ensure that a robust and fair system is in place for appraising high-cost new medicines to avoid similar issues about access to medicines with other companies and drugs in the future. The time for words is over; on behalf of our constituents, tonight we demand action.