Cancer patients frozen out of talks on price of drugs
Patients are not being consulted as part of vital talks on changing the system for pricing and assessing new drugs, charities warned last night.
Only the Government and the pharmaceutical firms that stand to profit from drugs are involved in the negotiations.
Now a group of more than a dozen leading cancer charities say those who suffer from potentially killer diseases must have a say.
The Western Daily Press has reported on a series of high-profile controversies over the past few years in which West cancer patients have been refused lifesaving drugs.
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And the issue is sure to climb the political agenda in future years, as the region’s ageing population will require increasing numbers of expensive drugs, while money will remain tight.
The discussions are about a new system to start in January 2014 that will price drugs according to their value to the patient and society.
This is known as valued-based pricing, and will move away from the current system which critics feel focuses too much on cost.
But charities, led by Prostate Cancer UK, warn that ignoring the views of patients risks undermining the credibility and effectiveness of the system before it even starts.
They have published a report including the views of people affected by cancer, that says:
Changing the system must lead to significant improvements in access to clinically effective drugs.
Drugs that improve people’s quality of life should attract the greatest value, with reductions in pain and fatigue as a high priority.
Drugs that give people nearing the end of their lives previous extra time must be given a higher value.
People suffering from cancer are worried about proposals to give higher value to drugs aimed at helping people back to work – this poses a risk that those who are already retired or too unwell to return to employment will lose out.
Prostate Cancer UK chief executive Owen Sharp said: “NHS patients throughout the UK rightly expect to be among the first in the world to access the best, most innovative treatments for their condition.
“But, as we know all too well, this is not always the case. While we welcome efforts to move away from the current process of pricing drugs, it is clear that a new system which better reflects the value medicines bring to patients cannot be achieved if patients are not included in the process.”
Hugh Gunn, who has prostate cancer and is a patient representative at the charity, said: “It doesn’t make sense that those who will be directly affected by the changes to drug pricing have not been consulted.”