A coalition of leading UK cancer charities has criticised the government for "shutting patients out of crucial talks" on the proposed value-based pricing (VBP) arrangements for new drugs.

The charities, led by Prostate Cancer UK, have warned Ministers that ignoring the views of patients risks seriously undermining the credibility and effectiveness of the new system before it has even been established.

Discussions on the new system are currently underway, but they involve the government and the pharmaceutical industry only, "with patients being denied a voice," says the group.

Therefore, Prostate Cancer UK says, it has taken the initiative to work with other charities to research the views of people affected by cancer in an attempt to ensure they are put at the heart of the new plans, and has now published the collective voice of over a dozen leading cancer charities in a new report.

The study sets out that, although the principle behind the reforms are welcome, the charities' members will not support VBP unless it can be shown to lead to improvements in access to vital drugs. It finds that people affected by cancer see reform as an opportunity to improve the current system, but also that they want and need to have an equal voice in negotiations. 

The study also proposes that a new body should be set up to represent and strengthen the voice of patients in the drug appraisal process across the UK. It finds that people affected by cancer place a high value not only on drugs which provide clear clinical benefits, but also on those which improve quality of life, especially treatments which reduce pain and fatigue, and on end-of-life drugs.

"NHS patients throughout the UK rightly expect to be amongst 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," said Owen Sharp, chief executive of Prostate Cancer UK.

"Whilst we welcome efforts to move away from the current unwieldy 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," he said.

"We know that men and women affected by cancer have the experience, the knowledge and above all the desire to help develop a better system. Today, patients are demanding the opportunity to do so," added Mr Sharp.

Among the report's key recommendations are that:
- reform of the current system must lead to significant improvements in access to clinically-effective drugs across the UK;
- a new and improved method for involving people affected by cancer in the process of appraising drugs must be introduced. A new collective body that represents patients in drug assessments may be a good way to do this;
-  drugs which improve people's quality of life should attract the greatest value, with reductions in pain and fatigue as a high priority;
- drugs which give people nearing the end of their lives precious extra time should be given a higher value, and this must be reflected in the new system; and

- the groups have concerns about proposals to give higher value to drugs aimed at helping people back to work, They point out that this poses a risk that many people affected by cancer will lose out as they will have already retired or are too unwell to return to work.

"It doesn't make sense that those who will be directly affected by the changes to drug pricing have not been consulted," said Hugh Gunn, who has prostate cancer and is a patient representative at Prostate Cancer UK.

"I have been through the severe pain of cancer followed by the liberating gift of a breakthrough treatment. In my view, to ignore experiences such as mine when defining the value of new drugs would be a terrible mistake," said Mr Gunn.

Asked by Pharma Times for the Department of Health’s reaction to the report, a spokesperson said: “we welcome the contribution of patient groups and are ensuring they have the opportunity to inform plans for value-based pricing.”