Bexhill family's plea for petition support

Four-year-old Jack with mum Katie
Four-year-old Jack with mum Katie

The family of a four-year-old cancer sufferer from Bexhill are asking for the town’s support to make a life-saving medical treatment available on the NHS.

Since his diagnosis with an aggressive form of childhood cancer known as neuroblastoma, four-year-old Jack Jefferys’ family have worked tirelessly to both raise awareness of the condition and to raise money for a treatment known as ‘Anti GD2 Therapy’.

While used extensively in the USA, the treatment – which uses a drug known as dinutuximab beta – has not been approved for use by the NHS, due to concerns about the costs of the drug and its long-term effects.

Dismayed by the NHS position, Jack’s uncle Brendon Jeffery has set up a petition calling on Parliament to intervene and make the treatment available. In the petition, Brendon said: “One of the founding principals of the NHS was ‘Medical treatment covering all requirements will be provided for all citizens by a national health service’ as stated by Sir William Beveridge (1942).

“If we have the ability to treat children such as Jack and many others but do not do so, we are undermining the very base principals of our NHS and, even worse, we are betraying our own children by making funding a real factor in life-and-death healthcare.”

The petition (available online at bit.ly/2kjMdoM) already has more than 15,000 signatures but Jack’s family are aiming to take it above 100,000 in hopes of triggering a parliamentary debate on the issue.

Earlier this month The National Institute for Health and Care Excellence (NICE) – the organisation which decides on the availability of NHS treatments – issued its latest views on the treatment.

Meindert Boysen, of the NICE Centre for Health Technology Evaluation, said: “Dinutuximab beta shows a lot of promise, but the evidence is uncertain and we must acknowledge this. There is opportunity for the company to collect longer-term data from the ongoing trials. This could make dinutuximab beta a candidate for inclusion in the Cancer Drugs Fund (CDF).

“However, the company needs to demonstrate that the drug has at least the potential to be cost-effective before we can consider recommending dinutuximab beta be included in the CDF.”