Written by Matthew Woolf, Education & Outreach Executive
Last week, women in England with an incurable form of breast cancer were given access a drug that can extent their life. But it wasn’t discovered then. The therapeutic branded as Enhertu was deemed safe and effective over five years ago, and the delay was down to its cost. During the wait a patient led advocacy campaign used the frustration as fuel, never wavering from the well-directed hope that even the most challenging of deals, between pharma interests and government regulators, could be aided by the power of their voices.
Enhertu is a drug that helps extend the lives of people with an incurable type of cancer called HER-2 low, which affects around 1000 women in the UK. The drug works by pairing a potent chemotherapy agent to something knows as a ‘monoclonal antibody’ which acts as a biological honing device that locates the drug to the ‘her-2’ receptors which stick out from cancer cells and are unique to them.
But in patients with HER-2 low cancer, another challenge is that only a few of the cancerous cells have the receptor limiting the drug’s potency, as not enough cancerous cells would be reached. Enhertu cleverly gets around this by allowing the toxic part of the drug to uncouple from the locator once it has bound, allowing it to diffuse between many cells, killing the whole cancer more effectively – as the cancerous cells tend to be grouped together.
Despite promising results in trials and initial approval from America’s FDA back in 2019, UK health regulator NICE declined to approve its use in 2024, citing the prohibitive cost. This news triggered the launch codes for a campaign of tireless endeavour. Two petitions set up by the charity Breast Cancer Now gathered over 385,000 signatures. An early day motion arguing for the drug’s prescription was tabled to parliament, receiving the support of 65 MPs. And in July this year, members of the campaign formed a queue in Trafalgar Square, representing their wait for treatment, among them were the shoes of those who had passed away whilst waiting in that queue.
For many in Trafalgar Square, they were the shoes of friends and family. The campaign was driven by people who knew that the benefits they brought may come too late for themselves.
One of those was Jeannie Ambrose, a leader of the ENHERTU now campaign. She told the BBC two years ago “I want to keep living. I should be concentrating on enjoying time with my family and friends. I should not be campaigning, using the time I’ve got left to fight.”
Tragically, she did not live to see her victory. But the campaign’s success and the extended lives of others with this cancer will serve as a legacy to her, and to the power of patient activism in forcing change.
Through people like her, we can be hopeful that patient voices will be listened to. At Jnetics, our support of the Jewish BRCA programme proved this. For many, the programme saved their life, and they let this be known. Advocacy works. Jnetics has advocated for the NHS Jewish BRCA programme to become permanent, which the NHS has now committed to, starting in late 2027 or 2028, and in the meantime, keep a close eye on Jnetics website for where we will fill the gaps.
Last week, Kate Wills, who has stage 4 HER2 cancer and is a prominent activist for the ENHERTU campaign, told the BBC: “I really can’t believe it. I’m so relieved, I’m overjoyed,” she said. “It’s so hard keeping hope when you have stage four cancer. This gives me enormous hope.” Reactions like hers prove that such change isn’t expected and highlight how far we still must go to ensure patients’ voices are heard. At Jnetics, we will continue to amplify them.
