Last week, our Policy and Campaigns Manager in Scotland, Lawrence Cowan gave a speech at the launch of the independent review into access to new medicines in Scotland. 

Here, he gives his thoughts on what was discussed last week and what we can and must do better in the future.

Tuesday 29 March 2016      Policy and campaigns blog
Access to new medicines in Scotland

The systems we have in place for giving patients access to new life-extending medicines in Scotland need to change. Things have improved but there is so much more we can do.

Because this is about people.

Of course, systems and processes are important but the starting point has to be the patient and their family. Effectively, we need to change the emphasis of the current system to one that assesses what it would take to say "yes" to new medicines that give people more time to live.

We shouldn’t talk about the system in the abstract. Two out of five of us will develop cancer in our lifetime. The Scottish Medicines Consortium (SMC) assesses medicines for all conditions so this is a system that will affect all of us at some point in our lives.

How would we view the systems as patients?

Whenever I talk about access to medicines I think about the experience of a woman I know. Her fight to get access to new treatments while living with incurable secondary breast cancer is both inspirational but also a clear sign of the injustices in the systems we have in place.

Before her diagnosis she lived a very normal and busy life with her four kids. Like most of us she tried to keep fit and eat well.

One day, while out jogging, she started to feel really breathless. She then developed a dry cough. She went to her doctor thinking it was nothing. After a few tests she was told she had breast cancer and that the cancer had spread to her lungs, liver and bones.

She hadn’t missed anything. She was just, as she puts it, “extremely unlucky”. Any one of us or someone in our family could find themselves in a similar position.

As she goes through more and more treatments, the options to keep her alive reduce. It has got to the point where she has had to put her hands in her pocket to pay for a drug that her and her clinician thought would be worthwhile. Again, a similar situation could happen to any one of us or someone in our family.

The fact is that, however far we’ve come – and we have come far – the system can still be a rollercoaster of fear, confusion and frustration for patients. We can and we must do better.

Have systems improved?

To put it simply, yes they have improved. The system is more open – patients and patient groups now have a better understanding of how the SMC works. There are more resources available for public involvement and that shows in the improved relationships between patient groups and the SMC.

But we can't stop there.

Where do we go from here?

  • We need to get better value for money – Too often when people discuss this issue they instantly think of new medicines as expensive. Yes, they cost money, but we need to focus on value for money. The SMC rightly judges cost-effectiveness but it largely judges the information and price put in front of it. As a process we need to proactively make sure that the system secures the best deal. It’s not just about reducing cost, it can also be about reaching creative solutions that make a positive decision possible.
  • We need better informed decision making – The SMC should invite challenge and a more widely informed discussion ahead of taking decisions. For example, expert clinician and patient involvement at the final SMC committee meeting could help clarify any points that arise.
  • The system needs to be fit for the future – The days of treating groups of patients in the same way are numbered. Medicines are moving towards being tailored to individual patients, so we need to make sure that the systems in place in Scotland can play their full role in making precision medicine possible on the NHS.
  • We need consistency in giving patients access to non-SMC approved drugs – As it stands, patients can apply to access non-SMC approved drugs through Individual Patient Treatment Requests (IPTR). These requests are approved or rejected through fourteen different local boards.

A submission from the Beatson Cancer Centre to a Scottish Parliament inquiry into access to medicines suggests that there is evidence that IPTR decision making criteria is different across Scotland. That means that there may be a postcode lottery for patients. No one wants to see that. That’s why we need to pilot a national approach to IPTR.

Imagine it was you.

As far as I can see, it comes down to this; if it was you, would you be happy having to fight tooth and nail for more time with the ones you love? Or would you want to know that the system has done everything it can to fight on your behalf?

We must give patients every chance to spend as much time as possible with the ones they love. Change is possible. We just need the will and determination to do it.

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About the author

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Lawrence Cowan is Policy and Campaigns Manager for Breast Cancer Now in Scotland.