A CORNISH charity has helped secure a major NHS treatment breakthrough for people living with rare cancer-like conditions after years of campaigning alongside patients, clinicians and politicians.

Histio UK, which is based in Liskeard, has been working to improve awareness of histiocytic disorders and secure fairer access to specialist treatments for patients across England.

The charity’s efforts have now been rewarded after the NHS confirmed it will routinely fund dabrafenib for eligible children and adults with rare BRAFV600E histiocytic tumours where standard treatment has failed.

The decision means patients with these conditions will be able to access a potentially life-changing treatment through the NHS rather than facing uncertainty over funding.

The breakthrough follows campaigning by Histio UK and support from South East Cornwall MP Anna Gelderd, who hosted a special event in Parliament bringing together patients, families, clinicians and MPs to discuss the barriers faced by people living with rare cancers.

The event highlighted challenges including unequal access to treatment, funding difficulties and the extra pressures faced by those living in rural communities.

Anna said her own experience as an unpaid carer for a family member with terminal cancer was one of the reasons she entered politics.

“That experience was one of the reasons I stood for election – to make change happen,” she said. “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 Histio UK so we could demand improvements in treatment.”

She welcomed the NHS decision, describing it as “fantastic news” for patients and their families.

“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,” she said.

The treatment recommendation was made by the Clinical Priorities Advisory Group, which reviews specialist medicines and treatments not routinely considered by NICE, assessing evidence around patient benefit, clinical effectiveness and value for money.

Lynn Jackson, Executive Director of Histio UK, said the announcement was a significant moment for families affected by the rare conditions.

“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,” she said.

“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.”

Ms Jackson said the decision was the result of a huge collective effort involving patients, families, clinicians and researchers.

“We’re 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,” she added.

She also thanked Ms Gelderd for supporting the campaign and bringing together key voices in Parliament.