Hansard

I am pleased to contribute to today’s debate about access to life-prolonging medicines and I thank the Labour Party for bringing it to the chamber. It is an issue of great concern and importance to many patients and their families in Scotland.

Earlier this month, working with Breast Cancer Now, I was pleased to host a summit on access to Perjeta here in Parliament with breast cancer patients, manufacturers, representatives of the Scottish Government and members of all political parties in the Parliament. Attendees at the summit heard moving and powerful testimony from breast cancer patients such as Jen Hardy from Edinburgh, who told us:

“I have lost out on 16 months of precious extra time with my beautiful family because I’ve been denied Perjeta. With every moment that goes by more women are missing out. The drug company, the Scottish Government and the SMC need to keep working together to make Perjeta available on Scotland’s NHS. It’s time to end this injustice.”

I commend Breast Cancer Now and individuals such as Jen and many others for leading such a high-profile and passionate campaign. At the meeting, we heard from another of my constituents, who spoke what were the most beautiful and poignant words that I have heard in the Parliament. The mother of two from Portobello said:

“In my case the differences of the extra time include better mental health reducing the overwhelming guilt at leaving my gorgeous children at such a young age. Instead I can again relax and enjoy time with them. I can also look forward to all the fun bits of being a mum such as being the tooth fairy, being with them as they learn to read and hopefully love books as much as I do, discovering Legoland and all sort of wonderful places and experiences. Perhaps even more important is knowing I will also be there at the difficult times maybe even reassuring them as secondary school and the teenage years approach.”

I hope that those words demonstrate why we are debating this important issue today, and why we must have urgent progress.

Although I welcome Roche’s confirmation that it will make a new bid to the SMC, Scottish campaigners and patients are understandably frustrated and angered by the delays that they face to access Perjeta when it is already available on the NHS in England and Wales.

Similarly, in the case of Orkambi, I was pleased to speak in last week’s members’ business debate that was led by my colleague Maurice Corry, in which I highlighted my constituents’ strong desire for access to the drug, which can, as we heard, transform the quality of life for people with cystic fibrosis.

Parents from around Scotland, including people such as Jenny Landers in my region, are to be congratulated on their campaigning efforts. It is because of them that we are here today and making sure that we achieve this change.

Although today’s debate focuses on Perjeta and Orkambi, I have been contacted in the past few weeks by constituents and families who are campaigning for access for themselves and their loved ones to other specialist drugs that they consider to be absolutely vital. Families of children with rare diseases, such as 5q spinal muscular atrophy types 2 and 3, want the SMC to help provide them with medicines that could radically improve their lives. They desperately want a system that is responsive, transparent and fast.

The Scottish Government, as the organisation that ultimately sets the rules around how the SMC operates, needs to show that it understands and can respond to patients’ wishes. As Opposition MSPs, it is our job to press ministers on this matter and speak up on behalf of our constituents.

Many elements of the Montgomery review are welcome, but there are growing frustrations that they might not go far enough and that the implementation of some of them is taking far too long.

My amendment adds to Anas Sarwar’s motion and reflects what patient groups feel in relation to the need to improve the patient access scheme assessment group. Current processes are failing and they are not able to assess, in the most adequate way, highly innovative medicines. No doubt we will all see a great many more of those come forward in the next few years, as technology advances and genetic profile-specific drugs emerge into the market. They are going to be for small patient numbers and we must be able provide access to them.

It is clear that too many patients and families across Scotland face barriers to accessing new drugs. The Scottish National Party Government and the Parliament need to make sure that that changes as soon as possible. Sadly, in too many cases that we will hear of today, it is too late for patients and their families. I support Anas Sarwar’s motion.

I move amendment S5M-12856.1, to insert at end:

“, and further calls on the Scottish Government to remove barriers to make access to new drugs easier, including the reform of the Patient Access Scheme Assessment Group.”