Lesley's story


Lesley Stephen

Just Treatment patient leader, Edinburgh

I've been affected financially, but maybe more importantly, emotionally by high medicine prices.  

In 2015 I was told that I needed a very expensive drug called Kadcyla, which costs around £90,000 per patient. At the time it wasn't available in Scotland, but it was the 'best' treatment available for me. 

I have four children, and am determined to stay alive and well for as long as I possibly can. The drug was deemed too expensive and not value for money in Scotland, though it was available in England. So at a time when I was fighting to stay alive, I was also writing to and meeting politicians and senior NHS managers to try to persuade them to let me access it. We also looked into moving to Newcastle so I could access the drug, but that wasn't feasible. 

In the end I had to use money my mother had left me the previous year when she herself died of cancer, to fund three cycles of the drug. I was shocked when the drug didn't work well enough for me - we had lost all my savings and I was still facing a very uncertain future.

So high drug prices have taken their toll on us financially, but the mental impact was worse. Imagine being told that you don't have long to live, but there is a drug out there that could help you but is out of your reach? I have seen friends die of breast cancer, unable to get their hands on drugs that could have given them longer. It's a form of mental torture. 

Imagine being told that you don’t have long to live, but there is a drug out there that could help you but is out of your reach?

Since 2015 when I self funded Kadcyla, I have been on an early stage clinical trial which seems to have stopped my 'full house' of cancer (brain, bones, lungs, liver) in its tracks. It's been truly astonishing and given me an extra 2 years of life I didn't expect to have. But I'm also aware that those trial pills I take every morning to keep me alive will no doubt cost many thousands of pounds as and when the drug comes to market, and be out of the financial reach of our NHS.

Just Treatment are determined to change this situation and enable patients like me to access those life changing drugs. They understand the pharmaceutical world and are able to challenge all those myths that pharma companies perpetuate, e.g. that it costs billions to develop one drug, that it costs hundreds of thousands to manufacture drugs and so on. Pharma companies are basically being given a 20 year monopoly to charge what they like, and that situation can't be allowed to go unchallenged.

I am not anti business - we need successful and thriving companies to support and develop the world economy. However, when drug companies are making billions in profit each year because they have a monopoly, and are therefore denying patients access to drugs that will extend their lives, it is morally wrong. We know that the NHS is under a huge financial strain and it cannot afford to provide these new drugs to patients. I ask pharmaceutical companies to look to themselves and their unethical current stance on pricing, and reduce their prices significantly to enable us to live.  

Elizabeth Baines