Anna Gelderd MP: NHS to fund rare cancer drug after Cornwall push

Children and adults across England living with a group of ultra-rare cancers will now be able to get a treatment on the NHS that campaigners say could change lives. The move follows a push led in part by South East Cornwall MP Anna Gelderd and a charity based in her constituency.

What the NHS has decided

The NHS will routinely fund dabrafenib for people with rare BRAFV600E histiocytic tumours, a group of blood cancers, where standard treatment has failed. Eligible children and adults with these conditions across England can now access it, and NHS England expects around 200 patients a year to benefit.

Dabrafenib is a tablet that works by blocking proteins that help cancer cells grow, slowing or stopping the disease. Because it is taken at home rather than in hospital, NHS England says it causes less disruption to patients’ daily lives than more invasive treatments. The stakes are high with these rare cancers. Without effective treatment, around one in ten children with high-risk disease die within a year of diagnosis, and seven in ten adults die within five years.

The recommendation came from the Clinical Priorities Advisory Group (CPAG). CPAG assesses specialist medicines, medical devices and treatments that are not being routinely considered by the National Institute for Health and Care Excellence (NICE), weighing them up on patient benefit, clinical effectiveness and value for money.

Dabrafenib’s approval came as part of a wider NHS package announced alongside it, which also cleared a new drug combination for children as young as eight and adults with Hodgkin lymphoma that has come back or not responded to standard treatment. The full details are set out in NHS England’s announcement.

The campaign behind it

According to Anna Gelderd’s office, the announcement follows her work alongside South East Cornwall-based charity Histio UK, together with patients and clinicians who had been calling for change.

Anna recently held an event in Parliament with Histio UK that brought together patients, clinicians and MPs. The charity says the discussion was in-depth and emotional, and it focused on the barriers patients face. Those included unequal access to treatment, funding difficulties and the extra challenges for people living in rural areas.

What Anna Gelderd said

“I was an unpaid carer for a family member with terminal cancer. That experience was one of the reasons that I stood for election, to make change happen. I heard from patients about their struggles in accessing the right treatment for them, and I was honoured to support them to get this change. That’s why I championed this issue in Westminster and held a meeting in Parliament with patients, clinicians, MPs and local charity Histio UK so that we could demand improvements in treatment.

“Today’s announcement is fantastic news for patients and their families, and I am glad that the NHS has made the right decision. This has been a team effort, and I’d like to thank Histio UK, every patient, campaigner, and clinician who has been involved in the work for fairer access to treatment. There is still so much more to do to support cancer patients, and I will always be on their side.”

What Histio UK said

Lynn Jackson, Executive Director of Histio UK, said the outcome had been years in the making.

“This announcement is excellent news for patients with BRAFV600E mutation positive histiocytic neoplasms, and for our Histio Champions and the team at Histio UK, who have worked tirelessly over many years to help achieve this incredible outcome. After years of determination and advocacy, eligible patients across England will now be able to access NHS treatment that has the potential to transform lives.

“This decision is the result of an enormous collective effort, delivered through the extensive and complicated Clinical Priorities Advisory Group (CPAG) process. We are incredibly grateful to the patients and families who shared their experiences, the clinicians and researchers who championed the evidence, and everyone who stood alongside us throughout this campaign to fight for greater healthcare equality.

“We would also like to thank Anna Gelderd MP, whose recognition, support and advocacy have been invaluable. By bringing together patients, clinicians and decision makers in Parliament, she created an opportunity for our voices to be heard in the corridors of power. Today’s announcement gives hope to families facing these rare conditions and marks a significant step towards fairer access to life-changing treatments.”

Wider healthcare work

Anna Gelderd’s office says she has been campaigning for improved healthcare access in local communities. That has included asking parliamentary questions about dentistry recruitment and retention, meeting Ministers about local healthcare issues, and working with providers such as Rosedean Surgery and Fowey River Practice on issues raised with her by local people.

📷Photo of Anna’s rare cancers roundtable