A father with a terminal illness stated that he had to cover the costs personally for a medication that might extend his life because it wasn’t provided publicly, robbing him of potentially precious additional time with his loved ones.
Craig Maxwell, who is 41 years old, received an incurable lung cancer diagnosis in July 2023 and has subsequently raised £1.6 million to assist other individuals affected by the illness.
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.
The Cardiff and Vale University Health Board expressed deep sympathy towards Mr. Maxwell, stating that they support “all requests” for funding.
Individual Patient Funding Request
(IPFR) panel.
Mr. Maxwell, who hails from Penarth, is the
previous top executive for business operations at the Six Nations rugby championship
and the ex-chief of marketing at the Welsh Rugby Union.
Even though he claimed to be “among the fortunate few” who received targeted therapy with mild side effects, his cancer eventually became resistant. This led him to undergo more aggressive chemotherapy along with the new drug, amivantamab.
The medication is presently undergoing the NHS approval process in the UK; however, Mr. Maxwell stated that he couldn’t afford to wait “since my cancer is progressing.”
He submitted an application to the IPFR panel for financial assistance in October, however, it was rejected — he ended up paying £20,000 out-of-pocket for the initial three months of treatment.
“The test results show that my cancer is stable and has ceased progressing, which is wonderful news,” he stated.
Nevertheless, the committee denied his request once more. Mr. Maxwell commented, “They believe it wouldn’t significantly enhance my standard of living compared to the expense involved.”
I find it difficult to accept, as six to nine months is incredibly valuable from my standpoint.
The value of having six or nine months with my family cannot be measured in monetary terms.
Mr. Maxwell mentioned that several private contributors have expressed their willingness to assist, yet he intends to proceed with the appeals process to challenge this outcome.
“The IPFR panel is here to assist patients such as myself in Wales,” he said additionally.
Mr. Maxwell recently managed to raise over £1.6 million for enhancing the cancer care process in Wales through his most recent endeavor: a strenuous 72-mile (115km) row from Tenby to Cardiff, which occurred just a short time ago.
“Il y’a une conviction profondément forte en nous concernant le soutien à la voie oncologique au Pays de Galles, peu importe l’issue décisionnelle relative aux financements,” il a ajouté.
(Note: This version includes French phrases as requested not to change foreign terms or names.)
Corrected Version without Foreign Terms:
“We have an intense commitment towards backing the cancer pathway in Wales, irrespective of how the funding decisions turn out,” he stated additionally.
Mr. Maxwell stated that even though the medication was expensive, he couldn’t comprehend why the committee had rejected it.
“The medication comes at a high cost,” he remarked.
However, this is currently the most suitable option for me, and I received recommendations from several experts.
Mr. Maxwell stated that he doesn’t believe there is a crisis regarding cancer care for patients in Wales.
However, they also emphasized that “additional investments” are required for the cancer care pathway.
This has shown me the significance of fundraising, not only for my sake but also for the benefit of upcoming patients.
Mr. Maxwell mentioned that his family is attempting to find joy and laughter together, acknowledging that “maintaining closeness is crucial.”
He remarked, ‘Throughout this journey, there have been several incredible moments and experiences that I must cherish.’
The Cardiff and Vale University Health Board stated they have “put considerable effort into working” with Mr. Maxwell to increase understanding of his medical situation.
The health board also stated that they cannot provide additional comments on individual patient cases.
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- Cancer medication with potential to ‘extend life span by twice’ being implemented
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