Labour must make the case for patient involvement

13th February, 2013 11:58 am

Since the formation of the Coalition Government no topic has generated as much heated debate as health and the NHS. Understandably, the vast majority of this debate has focused around the Health and Social Care Bill. However other fundamental changes have received much less attention – far fewer people are aware that from 2014 all new branded drugs will be subject to a revised process of drug pricing known as value-based pricing (VBP).

This change represents an opportunity to move away from an unwieldy system that delays access to life-extending drugs, results in inequalities in access to new medicines and relies on temporary measures such as the Cancer Drug Fund in England. Worryingly this is an opportunity that is in danger of slipping away.

Under the new system prices will be set based on the perceived value of a drug rather than its cost alone. Amongst other determinations, this new system includes considerations of the ‘wider societal benefits’ that any new drug would provide. To date, much of the debate around these ‘wider societal benefits’ has focused on the importance of helping people get back to work. This is an important issue, but one that is not relevant to everyone.   In particular, it may disadvantage those who are already retired, unable to re-enter the workforce due to ill health or are children or young adults who are still in education or training.

Although value-based pricing is scheduled to be introduced in 2014, not enough has been done to consult the most important group of all: patients. Availability of new drugs is always a highly emotive issue – despite this, little information has been made available about how VBP will work in practice. This lack of openness has prevented meaningful engagement with patients and patient organisations.

Having identified this gap, Prostate Cancer UK has commissioned a report outlining the views of people affected by cancer on these important changes. This report Value-based pricing: Getting it right for people with cancer, published in partnership with fourteen other leading cancer charities, shows that people affected by cancer want to have an equal role with the pharmaceutical industry and the Government in the design of the VBP system.

Patient groups have the experience, the knowledge and above all, the desire to help develop a better system. Clearly, a new process is needed to ensure that the views of people affected by these changes can be considered in a meaningful way alongside evidence on the clinical and cost effectiveness of drugs. Prostate Cancer UK are keen to work with politicians from all parties to get the best possible system for patients and are interested in hearing from anyone who wants to take action on this issue.

There are clear opportunities to champion the rights of patients, making the case that those most affected by VBP are at the heart of the system. As the Francis report made clear, the time for greater involvement of patients and patient groups in decision making has arrived, the case must be made before the chance for meaningful reform is wasted.

Dr Sarah Cant is Director of Policy and Campaigns at Prostate Cancer UK

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