Edinburgh mum hails change to NHS drug access

Breast cancer patient Lesley Stephen, pictured on the catwalk at Lisa's Glitteratea fundraising event for Maggie's. Picture Toby Williams
Breast cancer patient Lesley Stephen, pictured on the catwalk at Lisa's Glitteratea fundraising event for Maggie's. Picture Toby Williams
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A MUM has welcomed changes to Scotland’s drugs system after feeling “frustrated and let down” when she was refused access to a life-saving treatment.

Lesley Stephen, 51, has been lobbying for better access to new medicines on the NHS since she was diagnosed with advanced breast cancer in 2014.

The mother-of-four, from the city centre, has had to fund her own treatment as the drug she needs, known as Kadcyla, is not available on the NHS in Scotland. Her individual request to NHS Lothian for the drug was also denied.

Health Secretary Shona Robison announced a raft of new measures yesterday to improve the medicine approval system, which has come under fire for lack of transparency and consistency.

Lesley said: “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 hope that these changes will now put women, like me, and their families first.”

Former NHS Fife chief executive Dr Brian Montgomery set out a range of recommendations to beef up powers for the Scottish Medicines Consortium (SMC), the body which chooses medicines for NHS use.

The NHS will have a stronger role in negotiating costs with drugs companies and the regulator will be able speed up the process by temporarily approving medicines while it gathers further evidence.

Individual requests for rare medicines will be handled by a new system and there will be a national appeals process to make the system more fair.

Ms Robison said: “Access to new medicines for rare or end-of-life conditions has substantially increased in recent years, but we wanted to go further.

“The reforms I am announcing today will help more patients to get better access to treatments that can give them longer, better quality lives.”

The current system has attracted criticism over who is given access to drugs not available on the NHS.

First Minister Nicola Sturgeon stepped in when the case of Anne MacLean-Chang, from Elgin, was covered in a national newspaper after she was denied access to Kadcyla.

Mary Allison, Breast Cancer Now Director for Scotland, said: “It’s thanks to the courage of women who have shared their experience of a broken system that politicians have responded with action.

“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.”

lizzy.buchan@edinburghnews.com