Very sadly our inspirational patient leader, Julie died in January 2019. You can read a page of tributes to her memory here. Below you can hear, in her own words, about why she committed so much of her life to fighting for fair access to medicines for all. May she rest in peace and power.
Just Treatment patient leader, London
Hi, my name is Julie.
I was diagnosed with inflammatory breast cancer in October 2012. After 16 months of treatment, I found out that the cancer had spread to my liver, lungs, bone and later the brain.
A new drug called Kadcyla had just been launched via the cancer drugs fund and I was able to access fifty cycles of it. This was a new revolutionary drug as it targeted the cancer cells and not the entire body thus allowing for fewer side effects than traditional chemotherapy.
I am Scottish but live in London and at the time this drug wasn't available in Scotland, Northern Ireland or Wales. It struck me as so morally wrong that not everyone that needed the drug was able to access it and people were dying as a result.The choice of returning to Scotland to be with my family was taken away as I could only access this drug in England.
Kadcyla was reviewed by the cancer drug fund several times as the price demanded by the drug maker Roche - at around £90,000 per patient - was too expensive for the drug to be made available for regular NHS use. There was a real danger that this powerful drug that had eradicated all my tumours would remain on the shelf.
I became involved with Just Treatment in order to make a difference and to use my own personal story to be a voice for others. In the hope that this drug and other new expensive drugs could be available at a price that was feasible for the NHS and which would allow everyone access to them.
Just Treatment provided me with the opportunity to attend a media course which increased my confidence in talking to the media but also trained me to be specific in the points that I wanted to raise. This has given me the opportunity to put my point of view across in the media, for example on Sky News (left) when the drug pertuzumab was approved for routine use in England.
The day that Kadcyla was approved for routine use on the NHS was a huge triumph and put pressure on Scotland, Wales and Northern Ireland to follow suit. This was also the day that my oncologist told me that my body could no longer tolerate the drug. I am now in a situation where I can't access future targeted drugs like pertuzumab or palbociclib as they are only licensed as a first line of treatment with secondary patients like me, and as a result I have started fundraising to be able to pay for these drugs. It has been extremely hard to reach out to others and ask for money and it shouldn't be this way.
This experience fuels me further to continue to put the pressure on these pharmaceutical companies and the government to make these new drugs accessible to all.