Dunise's story

DUNISE MACIVER

Just Treatment patient leader

Hi I’m Dunise

I was diagnosed with breast cancer in Jan 2015 and 2 days later after a CT scan (which uses X-rays and a computer to create detailed images of the inside of my body), I was told it had already spread to both of my lungs. I went from a carefree 32 year old with my life ahead of me to a 32 year old with aggressive stage 4 breast cancer.

I’m originally from Scotland but had moved to England 3 years previously for work. My oncologist explained the plan, which was chemo right away plus Herceptin and a drug called pertuzumab which was on the Cancer Drugs Fund at the time. 

All of my family and support network still lived in Scotland and due to my grim diagnosis I was keen to move home to be with my family. At this point I was told if I moved back to Scotland I would not get the pertuzumab as it is not currently available on the NHS there. I could still receive the chemo and Herceptin. 

At that point my words were “so I have to choose between the drug that could give me a longer life, and being with my family?”. 

It’s not really the choice anyone wants to make under those circumstances. How do you possibly make this decision? The fact I had to make this kind of choice really upset me and made me think of how things could have been different if I hadn’t moved to England for work those years previously.

It highlighted to me the stark reality of inequalities in the UK health system and how simply where you live can impact your health and your length of life. It is wrong that some people get offered better choices of treatment due to where they live - this inequality must stop.

The argument given for pertuzumab not being available in Scotland is that the drug is not cost effective. The price of this drug is too high to warrant giving it to people who can benefit. Simply put, the extra “months” are not enough to pay such high prices. 

“No one should have a price tag on their life. ”

I am living proof that the 16 months extra that this drug can give people is the tip of the iceberg. I am now over THREE YEARS post diagnosis. I have not needed to change my treatment since initial diagnosis as I had a complete response to this treatment. I am living a normal life and this is not something money can buy. 

No one should have a price tag on their life.  Pharmaceutical companies are making huge profits from the overpricing of drugs like these, as it has been shown they can drastically reduce the prices when necessary and still make a profit. This equals corporate greed.

This drug has recently approved by NICE and made available on the NHS in England and Wales but the prices need to be dropped in Scotland and Northern Ireland so that every person who needs it can get it, irrespective of where they live. If there’s a drug out there that can help then every person who can benefit from it has the right to access it.

“Pharmaceutical companies are making huge profits from the overpricing of drugs like these”

The reason I became involved in Just Treatment is due to the fact I have had to make difficult choices to live a longer life. I am a patient, not a number and I have proven that this treatment can extend a person’s life by years, not months. I am living, breathing proof that this drug can give people not just life, but a quality of life. 

You can help support Dunise's campaign to make pertuzumab available on the NHS in Scotland by signing her petition here: justtreatment.org/dunise