Cystic Fibrosis (Drugs)

– in the Scottish Parliament on 31st May 2018.

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Photo of Alex Neil Alex Neil Scottish National Party

7. To ask the First Minister whether the Scottish Government will take urgent action to ensure that appropriate life-saving drugs are made available to people with cystic fibrosis. (S5F-02406)

Photo of Nicola Sturgeon Nicola Sturgeon Scottish National Party

The Scottish Government and officials from the national health service will be meeting Vertex Pharmaceuticals next month to continue to encourage it to make a fresh application to the Scottish Medicines Consortium for the drug Orkambi. The Cabinet Secretary for Health and Sport has strongly encouraged the manufacturer to make that submission, at a fair price, as quickly as possible.

As this kicked off when he was health secretary, Alex Neil will be aware that a new process known as the peer-approved clinical system—PACS—tier 2 goes live across Scotland from tomorrow. That will provide clinicians with the ability to make requests on an individual patient basis to the local health board for medicines that are not yet approved by the SMC.

Photo of Alex Neil Alex Neil Scottish National Party

I particularly welcome the fact that, from tomorrow, CF patients will be able to submit an individual patient request for the new drug Orkambi. However, there is still concern, as expressed by Professor Gordon MacGregor in the

Daily Record on Monday, about the lack of the general availability of Orkambi. Will the First Minister do all that she can to ensure that Orkambi becomes generally available, without people having to submit an individual request—which, of course, is not always successful—including, if necessary, reinvesting the rebates money from the pharmaceutical price regulation scheme to ensure that CF patients get the life-saving drugs that they need, as happened with Kalydeco in the past?

The First Minister:

I agree with all of that. Alex Neil is right to say that Orkambi is currently not routinely available in the NHS anywhere in the United Kingdom, although I understand that it is available in the Republic of Ireland. As I said in my opening answer, Government and NHS officials will meet the pharmaceutical company next month. We want the company to make a submission as quickly as possible for the medicine at a fair price.

We will continue to ensure that any rebate from the PPRS is invested in new medicines, as we have done in the past. Negotiations are about to start but, again, the UK Government leads such negotiations with pharmaceutical companies.

As I have spoken about previously in the chamber, we will continue to implement the reforms, one of which is the PACS tier 2 initiative. Access to new medicines has increased significantly in recent years due to such reforms. We will continue with the reforms and continue to ensure that any rebate is invested, and we will encourage pharmaceutical companies to bring forward new medicines at fair prices so that, across Scotland, people who need such medicines have best access to them.

The Presiding Officer:

That concludes First Minister’s question time. I suspend for a few moments to allow those in the public gallery who wish to leave to do so and our new guests to arrive.

12:47 Meeting suspended.

12:50 On resuming—