Labour must make the case for patient involvement

February 13, 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

Latest

  • Comment Labour could lose out by not making it’s stance on Trident clear

    Labour could lose out by not making it’s stance on Trident clear

    Cutting Trident will be the price of support in a hung parliament. That’s the news reported from a meeting of the SNP, Plaid Cymru and Green leaders this week. With Labour’s slim lead and the SNP and Green vote threatening to impact on its share, this is a serious issue. Labour’s policy clearly states, ‘Labour has said that we are committed to a minimum, credible independent nuclear deterrent, delivered through a Continuous At-Sea Deterrent. It would require a clear body […]

    Read more →
  • Comment Featured Is Cameron “frit” of TV debates? Let’s try the empty chair threat

    Is Cameron “frit” of TV debates? Let’s try the empty chair threat

    Lord Ashcroft has told him he shouldn’t have done it in 2010. Lynton Crosby has told him not to do it in 2015. It’s no surprise that David Cameron is trying to wriggle out of televised leader debates during the General Election – even though he has said he is willing to take part “in principle”. Time perhaps to dust off one of Margaret Thatcher’s favourite barbs “He’s frit.” Neil Kinnock tried it in 1992 to try to goad John Major into […]

    Read more →
  • Comment Flexibility makes for good work, strong families and thriving communities

    Flexibility makes for good work, strong families and thriving communities

    By Stephen Timms MP and Ian Murray MP The Christmas period reminds us that modern life can be busy, hurried and demanding. The pressures of work, demands of family life and hectic Christmas schedules can prove stretching as we juggle competing demands. Increasingly the need for flexible work is driven by the complex shape of people’s lives; as parents go to work, struggle to make ends meet, perform career roles, take their children to school and activities and try and carve […]

    Read more →
  • News Labour MP questions campaigning roles of publicly funded advisers

    Labour MP questions campaigning roles of publicly funded advisers

    As the start of the long campaign begins today, curbing the amount of money parties can spend between now and May 7th, Labour MP Jon Ashworth has sought to clarify what precautions are being taken to ensure publicly-funded government advisers are not using their time campaigning. Ashworth has sent a letter to senior civil servant Jeremy Heywood, asking him to answer a number of questions about what kind of campaigning activity was permitted and undertaken by special advisers (SpAds) in […]

    Read more →
  • News Berger asks Twitter to do more to stop use of racist words

    Berger asks Twitter to do more to stop use of racist words

    Luciana Berger, Shadow Minister for Public Health, has called on Twitter to do more the stop racist terms being used on the site. Berger has herself faced a large amount of anti-semitic abuse on the site, and in October Garron Helm  was jailed for sending her a torrent of anti-semitic messages. Berger told the Telegraph (£): “At the height of the abuse, the police said I was the subject of 2,500 hate messages in the space of three days using […]

    Read more →