Improving access to new breast cancer drugs

Improving access to new breast cancer drugs

When I first started volunteering with METUPUK, I wasn’t really sure what I would do. For a few months, I sat on the sides to get a feel for the organisation. I shared METUPUK links on social media, but I don’t have much of a social media presence, and Instagram is a bit of a mystery to me. I’ve never figured out how to do makeup, plus my hair is a non-event after chemo. I thought I wanted to help with drug access or access to clinical trials, but I was flexible and wanted to see what was needed.

A Real Life Accounts of Accessing Clinical Trials

Clinical trials

In 2018 I was diagnosed with secondary breast cancer in my liver, I was 44.

I knew the survival statistics were grim, so decided from the outset, in order to outlive the 2 to 3-year median I’d have to embrace experimental drugs and treatments.

I made this clear during my first oncology appointment, telling my doctor I was keen to sign up for clinical trials right from the start.

Fighting for Palbociclib

Fighting for Ibrance

Under NICE rules, I would not be eligible to receive the medication that I am currently taking for my metastatic breast cancer on the NHS. I have been on my current drug regime since 2017, I am feeling really well, my disease is stable, and my scans are clear.

I began taking Palbociclib over 3 years ago, badgering my Oncologist and accessing it through a free trial set up by Pfizer. The trial was designed to sway NICE into approving the drug for NHS use, despite it’s high price.

The Cancer Postcode Lottery

The cancer postcode lottery

I have been living with secondary breast cancer for 7 years, and am very aware that I’m one of the very lucky ones as the median life expectancy is 2-3 years.  The general public perception of breast cancer is that it’s ‘sorted’ – eg if you get it you will be fine.  But few people realise that when it metastases (spreads) to the organs as mine has, it cannot be cured. It is the biggest killer of women under 50 with over 11,000 women dying of it every year in the UK.