Meeting of the Parliament 20 June 2018
I thank the Labour Party for bringing an extremely important topic to the chamber for debate.
I ask members to imagine a situation in which a family member or loved one could live longer if only they were given access to a medicine that they knew already existed, and then to imagine their frustration should that person be denied that drug. By so doing, we get to the crux of why the debate is so important.
We have seen in the media the personal testimonies of patients who need the drugs in question. Last month, a young woman wrote to the First Minister to beg for access to Orkambi. That drug would improve her chances of living beyond the age of 31. A few weeks ago, as part of a Breast Cancer Now campaign, I met a campaigner who desperately wants and needs Perjeta in order to increase the time that she has left.
The specialist drugs Orkambi and Perjeta are potentially life changing. Orkambi is a precision medicine that targets the root cause of cystic fibrosis and has the potential to improve the lives of more than 336 people in Scotland by preserving and restoring full lung function. Perjeta is a drug for people with HER2-positive breast cancer that is said to prolong the lives of women with incurable breast cancer by up to 16 months.
That is why it is so important to discuss those drugs’ availability in Scotland. The Scottish Conservative Party has consistently called for both drugs to be available on the NHS. Miles Briggs hosted cross-party talks on the availability of Perjeta this month, and in May Ruth Davidson raised the issue at First Minister’s question time and stated that breast cancer sufferers had travelled to England to access the drug. Last week, Maurice Corry led a members’ business debate and called for Orkambi to be made available in Scotland.
Cost will always be a factor in making such decisions, of course, but it is clear that the Scottish Government must provide clarity about what it intends to do. There are underlying issues and reform is needed. With regard to negotiations, the SMC of course makes decisions independent of Government, but it is, after all, the Government that sets the framework under which those decisions are made. That is why the Scottish Government must prioritise putting in place a negotiating system that will ensure greater access to the drugs. It is 18 months since the Scottish Government promised to do so, so I call on the cabinet secretary to provide a clear deadline for when we can expect that. Furthermore, as is alluded to in Miles Briggs’s amendment, we must push for reform of the patient access scheme assessment group to make access to high-cost drugs easier for patients.
In addition to those reforms, I echo the calls that are being made by Miles Briggs for a cross-border arrangement to ensure that no one misses out on crucial care. Medicines are also available in Scotland that are not available in England, which is why it is so vital for us to work together and share resources.
I reiterate my support for the debate. The time has come for greater clarity surrounding new medicines. We have seen in recent weeks just how pertinent are demands for life-changing drugs to be made available in our NHS. Our patients suffer as a result of lack of decision making and complex discussions around cost—which must, of course, be factored in. However, I call on the Scottish Government to put in place urgently a new system of negotiation for such life-saving drugs. Only then will patients get the chance that they deserve to extend their lives and give relatives a source of comfort.
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