Alison Tait shares her story about campaigning for the life-changing drug Perjeta to be made available in Scotland.

Friday 28 December 2018      Policy and campaigns blog
Lawrence Cowan, Anas Sarwar MSP, Miles Briggs MSP, Jen Hardy, Alex Cole-Hamilton MSP and Alison Johnstone MSP

L-R: Lawrence Cowan, Anas Sarwar MSP, Miles Briggs MSP, Jen Hardy, Alex Cole-Hamilton MSP, Alison Johnstone MSP

In May 2018, we launched our Perjeta Now campaign in Scotland which aims to make Perjeta available on Scotland’s NHS. Perjeta is an extraordinary drug which can offer women with incurable secondary breast cancer nearly 16 months of extra life compared to other treatments. It is routinely available on the NHS for treating secondary breast cancer in England, Wales and Northern Ireland – but not in Scotland.

Alison is one of our amazing supporters who joined the campaign to make Perjeta available in Scotland and told her story to the media.

Joining the Perjeta Now campaign

Alison TaitWhen I saw Jen's story I wanted to support her with it. I know I am one of the few in Scotland who have been able to access Perjeta. This is because I have private health cover through my employer, RBS, and they were able to fund it for me.

Receiving this drug will have contributed to me reaching some key milestones in my daughter's life and enjoying more time with my family and friends. 

I enjoy sharing my story as it shows the fantastic quality of life that people can have while receiving the treatment. It means a lot to me to be able to help others who can potentially benefit from this drug in the future and I do it for those who've not had the chance.

Getting involved with the drugs appraisal process

Alison also helped by getting involved with the drugs appraisal process in Scotland. She sent us quotes to use for our patient group submission to the Scottish Medicines Consortium on Perjeta. This is really important as it helps to inform the Committee about how much having access to Perjeta means to women in Scotland. Quotes are read out by staff during the meeting and these help influence the Committee’s decision.

Alison and another of our campaigners, Suzanne, joined us at the SMC Committee meeting in December when they met to consider whether Perjeta should be made available to treat secondary breast cancer on the NHS in Scotland.

Our campaigning plays a big role in influencing the outcome of the SMC’s decision. At the start of the meeting, the Committee Chair told members that they had received our petition with 12,203 signatures calling on them to make Perjeta available.

Alison told us what attending the SMC Committee was like for her:

It wasn't what I expected at all. I wondered how all these people were going to be able to reach an agreement on the provision of these new drugs. I was very impressed with the Chair of the forum who began by reminding the attendees of the 'rules' of the meeting: this helped make effective progress through the agenda.

It struck me how well prepared the decision makers were - all had clearly read the hundreds of pages of information on each drug to keep the discussion pertinent and to the point. Questions were answered and points noted.

Hearing the patient representatives talk about the impact of these new treatments and the devastating effects when these can't be accessed was really hard to hear. No aspect of these treatments is ignored.

Regaining control

Being involved in the Perjeta Now campaign meant a lot to Alison. Reflecting on her experience, she told us:

Breast Cancer Now do so much good work for breast cancer patients and I enjoy supporting their campaigns wherever I can. I'm up for doing much more in the future if they'll have me!

When your world is turned upside down with a breast cancer diagnosis getting involved can help you feel like you've regained a little bit of control. Telling your story is one thing but reading it back in black and white can be a very emotional experience.

Helping others understand what your life is like supports what Breast Cancer Now are achieving, and it makes you feel that you're a part of enabling future developments to become a reality for other people.

What’s next in the Perjeta Now campaign?

The SMC are expected to make their decision on Perjeta for secondary breast cancer on 14 January 2019.

Want to get involved in our campaigns?

Help us fight for breast cancer patients by joining our amazing network of campaigners. There are several ways you can get involved!
 
You can join our campaigns mailing by signing up to our mailing list

You can also join our community of campaigners and learn about what they are up to across the UK by joining our Action Network on Facebook. You can also like our Facebook page for Scotland to keep up to date on what we're up to. 

If you are feeling really inspired by Alison’s story and would be interested in telling us about your experience or joining at meetings with MSPs, please contact Ashleigh Simpson, our Policy and Campaigns Manager in Scotland.