Former Welsh Rugby Union commercial director Craig Maxwell was first diagnosed with incurable lung cancer in September 2022 and has raised £1.6m for charity since
A terminally ill former Welsh Rugby Union commercial director has had his request for a potentially life-extending drug turned down in the midst of his latest fundraising efforts.
Craig Maxwell, who was diagnosed with incurable and inoperable lung cancer back in September 2022, has been undergoing chemotherapy alongside using amivantamab – a drug not yet approved in the UK, but one that Maxwell says could give him an extra “invaluable” six months with his family. Having previously been turned down for funding, Maxwell had to pay for the first quarter of his treatment himself – recently telling WalesOnline it cost him nearly £22,000.
The treatment is approved in the US and some parts of Europe but is not yet freely available in the UK – with it currently going through the NHS approval process.
Prior to applying to a Individual Patient Funding Request panel, Maxwell said that the costs of continuing on the drug would be around £100,000.
Since his diagnosis, Maxwell, who also previously worked for the Six Nations, has completed the London Marathon, cycled from Cardiff to Paris and, last year, he walked the entire 780-mile Wales Coastal Path in just 26 days, delivering the match ball ahead of Wales’ Six Nations clash with France.
In doing so, he has raised around £1.6m for charities and will not use any of that money for his own treatment.
Most recently, he rowed from Tenby to Cardiff ahead of the Champions Cup final at the Principality Stadium.
It was during this latest challenge when he discovered his request for funding had not been successful, despite the fact that his latest results show that his cancer is “stable and has stopped growing”.
“They feel it’s not making a considerable benefit to my quality of life versus the cost,” he told BBC Radio Wales Breakfast.
“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.”
Maxwell told the BBC that some private donors had offered help, but, as he faces having to continue paying for the drug himself, he is planning to go through the appeals process to overturn the decision.
“The IPFR panel exists to support patients like me in Wales,” he added.
“I understand the drug is very expensive.
“But it is the best thing for me at the moment and it was recommended to me by multiple professionals.”
He added that his his family are trying to enjoy their time together, as he recognises 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 told the BBC it had “worked extensively” with Maxwell to raise awareness of his condition.
“We are unable to comment further on individual patient cases,” the health board added.
