Earlier this year, we launched a campaign to ensure all eligible patients can access Trodelvy (also known as sacituzumab govitecan), an exciting new drug that could give some women living with incurable triple negative secondary breast cancer (TNSBC) the hope of more time.
In this blog, we will share an overview of the work we’ve been doing alongside our incredible patient advocates and our amazing Breast Cancer Now campaigners to make sure everyone who could benefit from Trodelvy can access it.
While Trodelvy received its licence for use in September 2021, a decision on whether it will be made available on the NHS is not expected until Spring 2022 – meaning a delay of many months before women can access it.
That’s why we launched our Time for Trodelvy petition calling on Gilead, the company that own Trodelvy, to provide the drug free of charge to all eligible women until a decision is made on its routine use on the NHS. We know this is possible, as it’s happened for other cancer drugs this year.
Over 215,000 people have added their signatures, making this the most supported petition Breast Cancer Now has ever run - and the number continues to grow!
Shortly afterwards, our Chief Executive Delyth Morgan wrote an open letter to the then General Manager at Gilead UK & Ireland, underlining the call of the petition – that Gilead should provide Trodelvy free of charge and do the right thing by breast cancer patients.
Taking the Campaign to Parliament
In September, Labour MP and Breast Cancer Now ambassador, Mick Whitley, tabled an Early Day Motion (EDM) on Trodelvy calling on Gilead to reach an agreement with NHS England to provide Trodelvy free-of-charge to all eligible women, ahead of a decision on routine NHS access.
The EDM is a way for MPs to show their support for the campaign and put political pressure on Gilead to do the right thing, so we asked supporters to write to their MPs urging them to sign it. 39 MPs have signed the EDM so far. You can check if yours has signed it and ask them to take action if they haven't already.
Inquiry into Cancer Services
In October, as part of the inquiry into cancer services, our CEO Delyth Morgan and patient advocate Philippa Hetherington gave testimonies to the Health and Care Select Committee.
In her evidence, Philippa gave a moving account of what it was like living with TNSBC and why accessing Trodelvy was so crucial for providing hope.
In Delyth’s testimony, she talked about the broader need for regulatory and NICE alignment to help avoid similar situations from arising in the future and to ensure that patients can benefit from research breakthroughs at the earliest possible opportunity.
This week, a group of MPs led by Conservative MP Tracey Crouch, who herself had breast cancer, have written a cross-party letter to Gilead reiterating their concerns.
The letter, which was addressed to Gilead’s newly appointed General Manager for UK & Ireland, Dr. Véronique Walsh, calls on Gilead to follow the example of drugs companies Amgen and AstraZeneca which worked with NHS England to put in place agreements for lung cancer drugs sotorasib and osimertinib, so they were made available to patients during the gap between licensing and a NICE decision.
Working with our amazing patient advocates
Throughout the campaign we’ve worked closely with a group of incredible patient advocates: women living with TNSBC who could benefit from Trodelvy.
In October, they wrote to Gilead’s global CEO Daniel O’Day, to ask him to guarantee access to Trodelvy for all eligible patients free of charge until the NICE decision is made about its routine use on the NHS.
Alongside their letter, they filmed a powerful video explaining what having access to Trodelvy would mean to them.
Our patient advocates also met with Gilead representatives in September. This gave them a chance to put their questions about Trodelvy directly to the company and explain first-hand what a delay in accessing it would mean to them and their families. All of our patient advocates spoke passionately and eloquently in what was a frank and often emotional meeting.
We would like to thank everyone who has played their part in our campaign so far. In particular, Emma Metcalfe and Beth Coppin – two of our patient advocates who have sadly died since the campaign was launched.
Whilst Gilead has so far failed to reach an agreement with NHS England to ensure all eligible women can access Trodelvy ahead of a NICE decision, the company has introduced a pre-reimbursement access scheme which means that some patients will now be able to access the drug free-of charge. However, the scheme is limited in numbers and cannot guarantee access for all eligible patients. Limited is not good enough. To access this scheme, people should speak to their clinician as they will need to put a request into the drugs company to access the drug.
We will continue to campaign until all eligible women who need Trodelvy are guaranteed access to it to ensure that nobody misses out.
If you would like to follow our campaign and receive updates, you can sign up to our mailing list.