How can patients get involved in breast cancer drug assessments and use their experience to influence decisions?

At Breast Cancer Now, with the help of our supporters, we work hard to ensure patients across the UK can access new clinically-effective drugs on the NHS as quickly as possible. This blog explains how patients can get involved and use their experience to ensure the patient voice is heard loud and clear when decisions are being made about the use of new breast cancer drugs on the NHS.

A quick recap on who assesses drugs for use on the NHS

England, Wales and Northern Ireland

The National Institute for Health and Care Excellence (NICE) is the body responsible for assessing new drugs in England. Wales and Northern Ireland usually follow decisions made by NICE.

NICE reviews the clinical and cost-effectiveness of the new drug and as part of the assessment it’s crucial that NICE hears the views of a range of experts including, healthcare professionals, patients with experience of the drug or those who may be eligible for the drug in future, as well as patient organisations.  

Scotland

The Scottish Medicines Consortium (SMC) is the body responsible for approving drugs on the NHS in Scotland. Similar to the process in England, SMC gathers written and oral evidence about patients’ experience of the drug including the advantages and disadvantages of the drug from healthcare professionals and patient experts.

Why get involved?

A key part of drug assessments involves looking at how well the treatment works, for example, whether it improves patients’ quality of life and how it compares to current treatments. Sharing your experience and views of drugs with us ensures that decision makers understand what you think of new drugs.

Vicki who participated in a NICE drug appraisal with us explains what made her want to share her experience:

“I wanted to be involved and share my experience as I wanted others to be able to benefit from the drug treatment that had worked so well for me. As a secondary breast cancer patient, I know the hope new drugs can bring and how important it is to have drugs approved that can extend our lives.  When I got one of the last places on a clinical drug trial, I was running out of targeted treatment options. The previous 2 lines of treatment had not worked very well for me, and my cancer was starting to spread rapidly. I was beginning to lose hope and felt like this may be the end. The trial was a life saver for me, not only has it shrunk all the tumours, but it has also kept me stable for the past 3.5 years. I wanted others to benefit from this new treatment and being part of the Breast Cancer Now team to get the drug approved in England was my way of doing this. I also found it very useful to see how the process worked and the criteria used to evaluate new drugs”.

Nicola shares why she wanted to use her experience to help ensure other women could access a breast cancer drug that had worked so well for her:

“Even though I was able to access Trodelvy, a secondary breast cancer drug for triple negative breast cancer, before it was available on the NHS, I wanted to share my experience to help ensure other women could access the drug that had worked so well for me. That’s why I worked with Breast Cancer Now to input into the NICE process right from the start. Because of the treatment I’ve been able to do things that I didn’t think would be possible, my youngest just started secondary school, I made it to Glastonbury, and I also got to see shows that had been booked pre-covid, which I really enjoyed. I wanted others to have the same opportunity.

I found that getting involved was a great way of turning my experience into something positive. By sharing my views, it allowed the patient voice to be heard and showed that we’re real people and not statistics. Following the approval of Trodelvy in England, I was delighted and was given a sense of relief that everyone who needs the treatment can now access it easily without the fight and the worry. These are people’s daughters, mothers and sisters and deserve the best possible treatments to give us more time and the best quality of life. Approving new treatments gives women options, and with this comes hope, the hope of more quality time with our loved ones.”


 

How can patients get involved in drug assessments?

We participate in every NICE and SMC assessment of new breast cancer drugs, but we need your help to do this. There are several opportunities for patients to get involved and the first step is helping shape our written evidence submission by sharing your experience and views on the drug with us.  You may have experience of a drug through a clinical trial or having accessed it via an early access scheme run by a drug company. Or it may already be approved by NICE and available on the NHS in England and you could feed into our submission for the SMC assessment in Scotland and vice versa.

We’ll ask a couple of short questions about your general experience of the drug, and your views on the advantages and disadvantages, including any side effects you may have experienced and the impact on your day-to-day life.

It doesn’t take long to input, and you can choose how you provide feedback for example, you can either share your experience over email, or we can arrange a short call at a time that suits you. Any feedback you’re happy to provide is included in our evidence submission anonymously. Both NICE and SMC have teams specifically to help patients who are interested in getting involved in drug appraisals, as well as information available online about the process.

For NICE assessments, there may be an opportunity for you to attend a committee meeting where the drug is being discussed. This allows the patient to provide a first-hand account of their experience.  All meetings are held online, and we’d support you throughout the process.  

We’re with you, every step of the way

Whether you’re sharing your views with us to support our written evidence, or attending a meeting with us, we’ll be with you every step of the way to make sure you are comfortable and feel prepared. We’ll talk you through the process and answer any questions you may have.

Vicki shares her experience of joining a NICE committee meeting with us:

“I filled out questionnaires about my general experience of the drug treatment, and my thoughts on the advantages and disadvantages of the treatment. Following this I was offered the opportunity to join the NICE committee meeting as a patient expert along with Holly, a member of the Policy team at Breast Cancer Now. I was asked questions about the side effects and how I felt about the drug treatment. It gave me an opportunity to explain why I felt the treatment should be approved and the benefits it could bring.  The NICE committee take a patient’s view into account when assessing drugs and it really does help the process to have someone with first-hand experience of using the drugs to get their view point across. There were also clinical experts available to answer technical questions

Although the drug was initially turned down, it did eventually get approved. Being part of a team that eventually got it approved and knowing that already there are many people benefiting from the new drug is an amazing feeling. From my online support group, I know the drugs are starting to work for many ladies and for many people they know they have options for the future. The support offered by Breast Cancer Now in guiding me through the process was invaluable and they are there every step of the way to help.

In terms of time commitment, it was approximately 10-15 hours in total with completing the questionnaires, having pre- committee meetings to explain the process, meetings with Breast Cancer Now and then the actual committee meeting which was a few hours in length.  There was also time needed to read the papers for the meeting.”

How can patients find out about new drug assessments?

Make sure you’re signed up to Breast Cancer Now’s social channels including Changemakers and Twitter, as we use these channels to let patients know about opportunities to get involved in breast cancer drug assessments. We also post on Breast Cancer Now’s online Forum as well as in our Breast Cancer Voices newsletter.  

To receive important updates on our campaigns, including our work on access to drugs, you can also sign up to receive our newsletter.

Also check out our mid-year review blog recapping which breast cancer drugs have been approved for use on the NHS in 2022 and those that are currently being assessed.