Orkambi and Cystic Fibrosis

Paul Girvan Excerpts

Monday 19th March 2018 Westminster Hall

[Paul Scully]

One thing I will say in favour of Vertex in this case is that, although the amount of people who suffer from this condition is fortunately restricted, the research and development still has to go in. It is not like developing the next ibuprofen or cancer drug, which will go out to millions of people; this would go out to 70,000 people in the world. In order to build that research and development budget in, Vertex needs to charge reasonable costs for the drug. None the less, those costs do need to be reasonable. That is why the negotiation needs to be absolutely above board, transparent and sensible for the sake of the sufferers, who, frankly, do not have time to wait for a prolonged negotiation.

[Paul Girvan (South Antrim) (DUP)]

So much emphasis is put on the cost of treatment, yet if we add together the costs of the cocktail of drugs that many sufferers are currently on, there probably would not be a big difference from the cost of the new drug.

[Paul Scully]

I will come back to that important point in just one second. We were talking about the campaign being brought together, and I want to pay tribute to the hon. Member for Dudley North (Ian Austin), who has done a fantastic job in raising the profile of cystic fibrosis. I am sorry that I was not able to be at the roundtable that he hosted—I was out of the country—but 41 Members were there who were keen to learn more about this. That is because of his efforts and the efforts of the petitioners, and that is absolutely to be welcomed.

--- Later in debate ---

[Paul Masterton]

My hon. Friend powerfully sums up why Vertex, the SMC, NHS Scotland, NHS England and NICE need to work together to find a way to make Orkambi available on the NHS as soon as possible, not just in Scotland but right across the United Kingdom. I understand that confidential talks are ongoing and I very much hope that there will be a positive conclusion; there is no reason to assume that an agreement cannot be reached. We have seen things happening right across Europe, and in the Netherlands a deal was struck fairly recently to allow the drug to be made available.

[Paul Girvan]

Big pharma has a strong lobby and there are those within the industry who would lose out if a drug such as this were to be licensed and used in the UK. They would fight tooth and nail to ensure that it did not get across the line. I ask the Minister: whenever a new drug is assessed, is consideration given to the fact that there are those who will not want it to see the light of day?

[Paul Masterton]

I suspect that the Minister has listened carefully to that intervention. I, too, will be interested to hear his response.

I finish by extending my hope that we are able to get the drug licensed for more children—the current license is for those aged 12 and over. In January, the European Commission extended the marketing authorisation for Orkambi to include children aged between six and 11 —just like those young people whose desperate grandparents took the time to contact me—and, just days ago, the Republic of Ireland became one of the first EU countries to make Orkambi available to children aged six and over. I hope, therefore, that Orkambi will not only become available on the NHS in the near future, but that Vertex will make a further submission to the SMC so that it can also be available to six to 11-year-olds.

Cystic fibrosis is a serious, life-limiting condition, and Orkambi can help to give people with the condition as long and healthy a life as possible. Both in Scotland and across the UK, there should be no unnecessary delay in extending access to it, either because of age or because of its availability on the NHS.