“I should be dead, frankly,” says Ross Cunliffe. “I have multiple myeloma, I have stage 4 lung cancer, and I have AL amyloidosis, which affects my heart.”
On Friday, he should have been celebrating access to a pioneering new combination drug treatment on the NHS that is proven to extend lives, but officials turned it down –there was insufficient data to show how much longer patients live post-treatment and therefore rejected the combination, called Dara-Cybord, for NHS patients in England and Wales on cost-effectiveness grounds..
“Patients have told us time and time again how hopeless they feel knowing that they’ve been diagnosed with a condition which has no dedicated treatment option. To keep this game-changing treatment out of their reach is devastating. Particularly when fellow patients in Scotland have benefitted from Dara-Cybord on the NHS for months now. Access to vital treatments should not come down to a postcode lottery.
Dara-Cybord has been shown to be effective in clinical trials with patients five times more likely to go into remission. A 2015 study found that 55 per cent of patients with newly-diagnosed AL amyloidosis and treated with three of the drugs are estimated to survive five years. Fifty-nine per cent of patients who received Dara-Cybord had no sign of AL amyloidosis following treatment and longer remission times, a 2020 international study found.
“My medical team tells me that is happening already. If it’s a question of staying alive or putting a second mortgage on the house, it really forces you into a difficult decision,” he said.