Government warned over shutting patients out of drug pricing talks

Cancer coalition report shows patients demand central role in key negotiations 

An influential coalition of leading cancer charities, led by Prostate Cancer UK, has criticised the government for shutting patients out of crucial talks on changes to the UK-wide system for pricing and assessing new drugs. The cancer charities warn that ignoring the views of patients risks seriously undermining the credibility and effectiveness of the new system before it has even been established.

Discussions are underway to discuss a shift from the current system of pricing and assessing drugs. A new system that prices drugs according to their value to the patient and society (value-based pricing) is being considered, representing a move away from the current system which many feel focuses too much on cost1. However the discussions taking place to establish this new system only involve the government and the pharmaceutical industry, with patients being denied a voice.

In the absence of any meaningful public engagement Prostate Cancer UK 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. Their report published today "Value-based pricing: getting it right for people with cancer," presents the collective voice of over a dozen leading cancer charities and provides crucial insight into patient opinion on these vitally important negotiations.

The report sets out that, although the principle behind the reforms are welcome, members will not support value-based pricing 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 that they want and need to have an equal voice in negotiations. It also proposes a new body to represent and strengthen the voice of patients in the drug appraisal process across the UK. Furthermore the report highlights that, in addition to placing a high value on drugs which provide clear clinical benefits, people affected by cancer value drugs which improve quality of life, especially drugs which reduce pain and fatigue, and they place a high value on end of life drugs.

Owen Sharp, Chief Executive of Prostate Cancer UK said: "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. 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.

"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. We stand full-square behind them and urge the government to ensure their voice is heard."

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

"There are so many articulate and informed patients who are willing and able to air their views. It's time we, the people to whom these negotiations matter most, were put at their heart rather than being kept on the sidelines."

Key recommendations  set out in the report include:

-          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. People affected by cancer think that 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

-          People affected by cancer are concerned about he proposals to give higher value to drugs aimed at helping people back to work, as 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.  

ENDS