Healthcare: Drug appraisal - A matter of life and death

'Patient power' has transformed the PR strategies around new drugs - but at what cost? And what is the other side of the story? Gemma O'Reilly investigates.

Healthcare: Drug appraisal - A matter of life and death

Until recently the decision-making process surrounding new medicines was relatively low profile. The Government's drug rationing body, the National Institute for Health and Clinical Excellence (NICE), would appraise a drug and make a decision on its overall suitability, and NHS trusts would follow NICE guidance when deciding whether or not to use the drug.

But in the past three years the media have increasingly taken up the mantle of public crusader and backed campaigners fighting for access to the latest medicines, throwing the process and the PR strategies surrounding it firmly into the spotlight.

These PR strategies have succeeded in turning new drugs into household names. But there is a darker side to this campaigning. NICE and NHS trusts argue the focus on and demands for funding for expensive new treatments can divert attention and resources away from other patients. Put simply, money spent on life-prolonging cancer drugs may be money that could have been spent on neonatal care.

But this dilemma, along with the potential dangers and side effects of 'wonder drugs', is rarely reported. Press and broadcast media lap up tales of plucky patients fighting tooth and nail for access to life-saving 'wonder drugs', while mean-spirited health authorities heartlessly ruled against them on cost grounds. Drug campaigns become human-interest, David vs Goliath stories. For NICE and individual NHS trusts, the only solution is to evolve their own communications.

The beginnings

The origins of patient power can be traced back to the case of Roche's breast cancer drug Herceptin, which attracted media interest three years ago after some women were denied access to the drug and took their cases to the press. The treatment was approved for the advanced stages of breast cancer but did not have approval for the early stages of the disease.

Pegasus PR director Simon Hackett agrees that Herceptin was a starting point for the media taking a bigger role in the debate around NICE's approval processes. 'The noise around Herceptin was particularly loud, because of the emotional implications and high incidence of recurrent breast cancer,' says Hackett. 'Herceptin brought the tactic of engaging consumer media up the priority list. This was something pharma companies had probably been careful about, considering the strict guidelines that govern the industry.'

The campaign around Herceptin also played on the media's love of simplification. Herceptin became the wonder drug that would cure cancer - despite the fact it was only potentially effective in 20 per cent of patients. Headlines also trumpeted that the drug would halve the risk of cancer ever returning, despite trials showing nearly ten per cent of patients suffered a recurrence of cancer within a year. Trials also found some women had to stop taking the drug because of its side effects and Roche's own information warned Herceptin could cause heart failure. However, these details were all but ignored by the media in favour of the human-interest angle.

Media storm

Huntsworth market access director Fiona Bride says the media's interest was further fuelled when the High Court upheld NICE guidance on Alzheimer's drugs in 2007 despite a furious media storm. Campaigners failed in their legal bid to force the NHS to fund Alzheimer's drugs for people with early-stage disease. The High Court upheld NICE's decision that the drugs were only cost-effective in later-stage disease. It was the first time a judicial review had been sought on NICE guidance.

'With the current high-profile debate in the US regarding its healthcare reform bill and the discussion relating to the UK's approach to healthcare delivery, the trend looks set to continue,' says Bride. This means 'the opportunity for an agency to present information in an engaging, patient-centric way is high'.

But while agencies embrace the trend, mass media coverage of drug approvals and rejections has led to concern from NICE and NHS trusts, who feel that their points of view are not being heard amid emotive and often hysterical reporting.

NICE participated in a BBC documentary this summer aimed at better communicating its processes and helping the public understand how it makes its decisions. NICE external comms manager Dr Tonya Gillis says: 'The documentary took on board that we have incredibly difficult decisions to make and it brought across the depth of consideration involved.'

Meanwhile, NHS trusts responsible for implementing NICE's guidance and allocating its budgets can feel hard done by. NHS Salford was flayed by the media for refusing to pay for kidney cancer drug Sutent (see case study overleaf). Head of comms and marketing Karl Brookes explains: 'It is easy to point at a PCT and say "cut spend on cosmetic surgery" or "pay your management less in order to fund drugs". It seeks only to distract from the fact healthcare providers do not have bottomless pockets.'

Transparent information

Both NICE and NHS Salford are seeking to use the media to help the public understand how decisions are made. NICE currently puts all the information involved with an appraisal committee online in a bid to be more open and transparent.

NICE is also trying to communicate that it approves most of the drugs it appraises, says Gillis. 'The rejections are tiny in comparison with the approvals. But when a drug does not get a positive recommendation it gets more interest, which tends to skew people's understanding of NICE.'

Meanwhile, NHS Salford is attempting to engage the public in a debate and get its point of view across. Brookes says: 'By offering a clear point of view, we have discovered people now have an opportunity to support what we accept is an unpopular point of view. We have found people saying "Leave NHS Salford alone".'

This approach may not be the end of one-sided, emotive reporting around drug rulings, but it is sure to be the start of a debate that will include a multitude of different groups and points of view.



Pfizer called in healthcare media experts Reynolds-MacKenzie to handle the UK launch campaign for kidney cancer drug Sutent in 2006. It is licensed to treat two lethal cancers affecting the kidney and the gut. The product, taken orally, works by starving tumours of their blood supply and can help prolong life in kidney cancer patients.

The drug became the focus of media attention in August and September 2007, because it had been approved as a treatment, but it was not recommended for use by the NHS on cost grounds. A month's course costs £3,500 but, despite this, some primary care trusts offered it to cancer sufferers, so the dreaded 'postcode lottery' situation, whereby some people were able to access the drugs but others were not, reared its ugly head.

Conservative MEP Chris Heaton-Harris became involved in the campaign when he asked whether the refusal of Warwickshire PCT to give Sutent to one of his constituents might be an offence under European anti-discrimination laws.

A well-known kidney cancer patient affected by this situation was ex-Factory Records supremo Tony Wilson, who had to raise enough money to pay for his Sutent treatment. Wilson, who later died, made the point that certain cosmetic surgery procedures were available free on the NHS but this potentially life-prolonging drug was not.

Last week NICE ruled that Sutent would not be made available for second-line treatments, which has caused further outcry in the media.


NICE external comms manager Dr Tonya Gillis says: 'Like any other decision that is being made, we will work closely with colleagues who worked on it once we know the outcome. This means we are prepared to answer questions in the media.

'In the case of Sutent, we were aware that there would be interest, especially at the draft phase.

'We decided to issue a statement at consultation draft stage to help people understand the decision.

'As Sutent was one of a number of drugs for kidney cancer being appraised at the same time, we decided that Sutent would be split out, so that we would get positive guidance out to the NHS as quickly as possible. The other drugs were still under consideration. Unfortunately the evidence to support the use of the other drugs was not strong enough to justify using NHS funds.

'We want people to understand why a decision is being made. It is always difficult, but we had to be clear on why we were making the decision.

'We have since put all the information to which the appraisal committee had access on our website. Openness and transparency are essential.

'The NICE process sticks up for people without a voice too, as well as those who are shouting about what they deserve.

'We are there for everybody and we need to be careful that we can provide the best benefit and maximum health benefit for every pound.'


NHS Salford head of comms and marketing Karl Brookes says: 'The PR campaign for Sutent did deserve recognition, despite the fact it potentially diverted resources away from front-line services, which are designed to prevent rather than cure illnesses. And there was particularly the way, for example, the campaign distracted attention away from some awkward absolutes, including how Sutent "may cause heart problems".

'It was unfortunate that a myth about Sutent being life-saving arose. It is actually life-prolonging rather than life-saving - although, of course, those extra months will be valuable to the person with an illness and their loved ones.

'Ultimately, people can make up their own minds about how useful PR professionals in London boasting about achieving 400 press cuttings was in stalling an honest discussion about how the NHS' limited resources should best be used in this northern city.

'It is clear this is an emotive issue. There were calls for the resignation of our CEO, colleagues' cars were smashed up and some received abusive emails.

'For NHS Salford, there is a recognition that we need to deal with the issue head on - not least because inevitably there will be another equally deserving or life-enriching "wonder drug" along shortly. So we are embarking on an honest conversation. This conversation respects that for some we will always be a "vile organisation", but one that is less shy about celebrating the fact that NHS Salford is currently independently rated the best performing PCT in the country.'

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