Orkambi and Cystic Fibrosis

Patricia Gibson Excerpts

Monday 19th March 2018 Westminster Hall

[Patricia Gibson (North Ayrshire and Arran) (SNP)]

The development of the treatment offered by Orkambi has offered renewed hope to those living with cystic fibrosis and their families. Orkambi is suitable to treat around 50% of those with cystic fibrosis in the UK and, as we have heard today, that treatment can now be extended to those from aged six years, as opposed to the original licence, which was to treat those aged 12 and over.

We have heard today at some length about the controversy over the cost of the drug. As a Scottish MP, I was heartened by the Scottish Government Cabinet Secretary for Health and Sport, Shona Robison MSP, who strongly encouraged the manufacturer Vertex to take forward discussions with the patient access scheme assessment group secretariat. Those conversations continue. It is easy, and perhaps obvious, to point out the high cost of the drug—we have heard much about it—but who in this Chamber would not stretch every sinew for their child or loved one to access the drug if they could benefit from it? That is why parents and relatives of those living with cystic fibrosis have been campaigning so hard. What else can they do?

We have heard about the cost of the drug, but as we have also heard, the costs can be offset by reduced hospital admissions. NHS funding will always be under pressure as our technology advances. One consequence is that the cost of treatment is always likely to be driven upwards. Costs are important, and we have to be mindful of them, but I ask hon. Members, “If your child or loved one could benefit from a treatment, however expensive, what would you not do to help them to access it?” That is what drives those campaigning for access to Orkambi.

The campaign has been effective and moving, as we have heard. We must keep listening and empathising with what those people are saying, because we cannot just talk about pounds and pence when it comes to treatment. We are dealing with real lives, which must guide progress. Progress must be made—we all hope that happens sooner rather than later.

[Bob Stewart]

My point is very straightforward. It seems grossly unfair that some people can get hold of this drug and some people cannot. We ought to level the playing field.

--- Later in debate ---

[Patricia Gibson]

The hon. Gentleman makes an excellent point. That is why in Scotland we are setting up bodies to ensure that care and access to treatment is standardised across Scotland, and that it does not depend on the health board where someone lives or what route they can take to access the drug.

We heard from the hon. Member for Dudley North (Ian Austin) that there is a cost in not funding Orkambi. We have to keep that in mind, and find a way forward as soon as possible. We clearly need a more cost-effective proposition from Vertex, the production company. A constructive solution must be worked out with the Scottish Medicines Consortium, with an equivalent solution found for the English NHS. I am hopeful that a solution can be reached in Scotland and across the United Kingdom.

However, as we have heard, it is important that the processes about decisions for the approval of drugs are transparent and fair, and that we can be confident that a proper and extremely robust cost-benefit analysis is carried out. We hope that a way forward can be found and that progress can be made with the pharmaceutical companies about the cost of treatment—in particular, with Vertex and the cost of Orkambi, which can make a difference to the many people living with cystic fibrosis and their families. We owe it to them to do all we can to work with the pharmaceutical industry to find a way to make this happen. I sincerely hope we can do that.