Campaigning to change breast cancer drug assessment in England

What’s the project about?

We’re worried that the current system for deciding which drugs get made available on the NHS in England isn’t working. We think it puts people with secondary breast cancer at a disadvantage, compared to the old system, and could prevent them accessing some new treatments. 

So, we're launching a campaign to call for changes to the system. 

To support this work, we want to hear from people living with secondary breast cancer who would be happy to share their experiences publicly as part of the campaign. 

This could be on social media, in the media or face to face with MPs and other decision makers.

Who’s organising it?

Name of project lead: Paul Head

Job title: Campaigns manager

Organisation: Breast Cancer Now

Email address: paul.head@breastcancernow.org

Who can take part?

We'd like to hear from people living with secondary breast cancer: 

• In England, Wales or Northern Ireland, who are worried that drugs they could need in the future might not be made available on the NHS, or 
• In England, Wales or Northern Ireland, who haven’t or won’t be able to access Enhertu for HER2-low secondary breast cancer, after it was rejected for use on the NHS, or 
• In England, Wales or Northern Ireland, who are self-funding Enhertu for HER2-low secondary breast cancer 
• In Scotland who have been able to access Enhertu for HER2-low secondary breast cancer on the NHS, or 
• Who have moved to Scotland from elsewhere in the UK so they can access Enhertu for HER2-low secondary breast cancer

Why do you want me to be involved? 

Decisions on what drugs to approve are based on lots of technical calculations - we want to show the human impact of the decisions - what it means to the people who are relying on these drugs to give them more time. 

By sharing your experience you can help us bring to life a technical and complicated issue and make a compelling case for change. Your experiences will also help MPs, other supporters and the wider public understand why this is an important issue and encourage them to support the campaign.

What will you ask me to do?

Initially you'll need to complete our Tell us your story form - explaining a bit about yourself and your experiences. 

One of the team will then follow up with you, explaining how and where we'd like to use your story. 

For example we might want to use a quote from your story on a social media post - this could be agreed quite quickly over email. Other activities may involve a bit more time e.g. recording a video or attending an event. 

It would be totally up to you what activities you wanted to take part in and how time you wanted to give.

How do I get involved?

Please complete our Tell us your story form. 

If you have any questions about the campaign, you can contact Paul at paul.head@breastcancernow.org

When’s the deadline?

14 July 2025