Dad diagnosed with incurable lung cancer denied life-extending drug

A terminally ill father has said he was forced to pay privately for a potentially life-extending drug which could have given him an extra “invaluable” six months with his family.

Craig Maxwell, 41, was diagnosed with incurable lung cancer in July 2023 and has since raised £1.6m to support others with the disease.

The drug, amivantamab – costing over £20,000 – is not yet approved in the UK, despite trial data suggesting users have a 50% better chance of halting the progression of the disease.

Cardiff and Vale University Health Board said it “deeply sympathised” with Mr Maxwell, adding that “all requests” for funding are supported by the Individual Patient Funding Request (IPFR) panel.

Mr Maxwell, from Penarth, is the former chief commercial officer for the Six Nations rugby tournament and Welsh Rugby Union’s former head of marketing.

Although he said he was “one of the lucky ones” to benefit from targeted therapy with minimal side effects, his cancer developed resistance, forcing him to undertake more toxic chemotherapy and the new amivantamab.

The drug is currently going through the NHS approval process in the UK, but Mr Maxwell said he could not wait “because my cancer is spreading”.

He applied to the IPFR panel for support in October, but was declined – he paid £20,000 himself for the first quarter of treatment.

“My results have come back and my cancer’s stable and has stopped growing, which is fantastic news,” he said.

However, the panel recently rejected his application again. Mr Maxwell said: “They feel it’s not making a considerable benefit to my quality of life versus the cost.”

“I’ve found that hard to accept, because in my position, six to nine months is invaluable.

“There’s no cost you can put on that, to have six or nine months with my family.”

Mr Maxwell said some private donors had offered help, but he planned to go through the appeals process to overturn the decision.

“The IPFR panel exists to support patients like me in Wales,” he added.

Mr Maxwell has raised more than £1.6m to support the cancer pathway in Wales with his latest challenge, a 72-mile (115km) row from Tenby to Cardiff, taking place only a few weeks ago.

“We feel desperately strongly about supporting cancer pathway in Wales, regardless of what the funding decision is,” he added.

Mx Maxwell said, despite the cost of the drug, he did not understand the reason for the panel’s rejection.

“I understand the drug is very expensive,” he said.

“But is the best thing for me at the moment and it was recommended to me by multiple professionals.”

Mr Maxwell said he didnot think there is a crisis in cancer care for Welsh patients.

But added that there “needs to be more” investment in the cancer pathway.

“It’s made me realise how important fundraising is, not just for me, but for future patients.”

Mr Maxwell said his family are trying to enjoy and laugh together recognising that “staying close is important”.

“There have been some amazing moments and experiences throughout this journey and I have to savour them,” he said.

Cardiff and Vale University Health Board said it had “worked extensively” with Mr Maxwell to raise awareness of his condition.

“We are unable to comment further on individual patient cases,” the health board added.