Breast Cancer Now welcomes the Scottish Government’s response to the findings of an independent review of Scotland’s drugs system but warns that there is no time to lose in implementing change.
The independent review on access to medicines was conducted by Dr Brian Montgomery. In its response to the review’s recommendations the Scottish Government has committed to changes that should improve access to medicines including:
- Giving the NHS a stronger role in negotiating the cost of medicines
- More flexible decision making by giving the SMC the option to recommend a drug “for use subject to ongoing evaluation and future reassessment”
- Involving patient representatives more in the SMC process
- Bringing consistency to the way patients and doctors access drugs that the SMC has not approved by replacing Individual Patient Treatment Requests (IPTRs) with a new system. A national appeals process will also have the power to assess equity of access in its decision making.
Mary Allison, Breast Cancer Now’s Director for Scotland said:
“Today’s announcement brings fresh hope for patients and their families for a system that will finally put them first. It’s thanks to the courage of women who have shared their experience of a broken system that politicians have responded with action.
“At Breast Cancer Now we have campaigned for a system based on smart negotiation with drug companies and a fairer way of accessing drugs not widely available on the NHS. We are a big step closer to that today.
“The Scottish Government share our ambition to stop deaths from breast cancer by 2050. An essential part of achieving this shared ambition is ensuring people with breast cancer get access to the best treatments.
“Today’s commitment from the Scottish Government is welcome but we urge them to be bold and deliver these changes quickly and effectively. There’s no time to lose.”
Lesley Stephen, from Edinburgh, has been at the heart of Breast Cancer Now’s drive to change Scotland’s drugs system. The mum of four was diagnosed with secondary breast cancer in 2014. Last year, Lesley’s Individual Patient Treatment Request (IPTR) for the drug Kadcyla was refused forcing her to fund treatment herself.
Lesley welcomes the proposed changes to Scotland’s drugs system, she said:
“Being diagnosed with secondary breast cancer was a complete shock and it didn’t leave me with much headspace for anything else. Navigating the drugs system was a struggle – I was fighting tooth and nail against bureaucracy at a time when I should have been focusing on my health.
“I felt incredibly frustrated and let down. This was compounded when I realised that other women with secondary breast cancer, living in different parts of Scotland, could access a drug that I had just been refused.
“I’m pleased that the Scottish Government is committed to addressing these issues. I hope that these changes will now put women, like me, and their families first.”
Anne MacLean-Chang from Moray has secondary breast cancer and after an unsuccessful IPTR request for Kadcyla the mum of two was forced to crowdfund for her treatment. Following a battle with Health Boards she successfully appealed and is now being treated with the drug.
“I was completely shocked when the health board cast aside the recommendations of my consultant and rejected the IPTR request for Kadcyla.
“I was passed from pillar to post by different health boards, who had different processes in place. The whole thing was chaotic and confusing. I was forced to ask my friends and family to help me crowdfund for treatment. We raised £27,000 but I was terrified by what would happen when the money ran out.
“I felt utterly disappointed and abandoned by the drugs system so, backed into a corner, I spoke to a national newspaper about my story.
“I was lucky that my case was reconsidered but I want to make sure that these reforms improve the drugs system for other patients.
“I hope that we will now have a system that listens to the experts and is fairer for women who just want more time to live.”