Putting patients first: why people affected by cancer should be involved in value-based pricing

I may often sound like a broken record on this blog when it comes to challenging the health inequalities facing men in the UK, but accessing effective drugs on the NHS is one issue that affects us all.

The current system of drug pricing and evaluation has many benefits, including keeping drug prices relatively low compared to other countries but it does leave a lot to be desired. We know, for example, that the UK is often slower than other countries at taking up new cancer medicines. We also know that appraisal bodies such as the National Institute for Health and Clinical Excellence (NICE) and the Scottish Medicines Consortium (SMC) focus heavily on the cost-effectiveness of drugs. I have no problem with drugs being rejected because they aren’t clinical effective, – why should the NHS pay for drugs that don’t work? I recognise the current financial restraints the NHS is under and have personal experience of managing ever decreasing NHS budgets, but new treatments for all diseases will continue to be developed and we must have provision to be able to adopt them in the UK. If we are to have a world-class NHS and the best outcomes for patients, we need to invest in the most effective treatments.

Currently, under the Pharmaceutical Price Regulation Scheme (a policy which has been in place since 1957), drug companies set the original price of a drug and restrictions are placed on price increases and how much profit they can make from selling the drug to the NHS. Once the price is set, drugs are assessed (by NICE, the SMC or the All Wales Medicines Strategy Group) for their clinical and cost-effectiveness before being approved or rejected for use on the NHS.

From 2014 all new branded drugs will be subject to a new process called value-based pricing, which will involve setting prices on the perceived value of a drug rather than its actual cost. 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 safety nets and contingency plans such as the Cancer Drug Fund in England. This is an exciting prospect and we welcome the principles behind the Government’s proposals, but we must ensure the switch to value-based pricing leads to a vast improvement of the current system, or it will simply be a waste of time and money.

Although value-based pricing is scheduled to be introduced in 2014 (just 14 months away), not enough has been done to consult the most important group of all: patients. Having identified this rather worrying gap in the development of value-based pricing, Prostate Cancer UK pledged to bridge it, and commissioned a report detailing the views of people affected by cancer. Who better to help develop the system of drug evaluation and help define value than the very men and women for whom the process is designed to benefit?

Our report – Value-based pricing: Getting it rightfor people with cancer – published today in partnership with thirteen other leading cancer charities, shows that people affected by cancer want to have an equal role in designing the value-based pricing system. Their views and opinions also highlight the need for a new method of involving patients in the process of drug appraisals to ensure their views can be heard sufficiently.

In addition to placing a high value on drugs which offer clear clinical benefits, our research shows that people value drugs which provide quality of life improvements such as reducing pain and fatigue. People affected by cancer have also expressed their belief that drugs which give people nearing the end of their lives precious extra time should be given a high value. The report also identifies the increasing worry that focusing on the value of the societal benefits of drugs – such as getting people back to work – could disadvantage many people with cancer who may have already retired, are too unwell to ever re-enter the workforce or are children or young people still in education or training.  

The views of people affected by cancer should be integral to determining how value-based pricing will work. I have had an initial conversation on our report with the Chief Executive of the ABPI and we will be going to present the key findings at their HQ next week.  We have also sent copies of our report to  the Department of Health I and look forward to hearing their views in the near future. I’ll let you know what they say.