Please sir, I want some more

Posted on 14. Dec, 2009 by neilcrump in Communications, Health, Industry

In Charles Dickens’s second novel his plucky young orphan hero Oliver Twist tells the workhouse Master, bowl in hand, that he wants “some more”. The incredulous Master exclaims “What?” and Oliver repeats his opener: “Please sir, I want some more”. As we all know from the story, all hell breaks loose and poor Oliver ends up being cast out into the hard bleak world of 1830’s London.

Now as PR folk with extensive experience of communicating about rare (also known as orphan) diseases and treatments to the mass media we often face the same response to our pitch as Oliver. The simple truth is that national newspapers, broadcast outlets and medical titles, are less interested in reporting things that do not affect the masses or want an extraordinary patient case study which wouldn’t be Code compliant. Just take a look at the Aurora Top 20 to see the evidence for yourself.

The problem is that orphan diseases need a profile. The fact that they are rare often means that they are difficult to spot and therefore a person with a life-threatening, seriously debilitating or serious and chronic condition that occurs at low frequency in the population can end up in an even worse position. Their condition can remain unmanaged for longer, putting them at greater risk of morbidity and mortality. This is not good and plainly just not fair if a solution does exist for them but remains undiscovered due to a lack of profile.

Whilst this might not seem ‘fair’ it does however, from a media perspective, make perfect sense. Publishers want to enlarge, or at least retain, their audience so they can charge for the opportunity to hear or see the advertiser’s message (or in the BBC’s case justify the licence fee). So topics that affect the masses will attract more attention and are therefore the ones that are selected to make the headlines. That is the harsh truth and both metaphorically and commercially the bottom line.

Even if a journalist is personally interested in a story about an orphan drug, they assess it with questions like: ‘will this get through the wider editorial process?’ and ‘how am I going to pitch this internally?’ In the high pressured 24/7 media machine, the topic that impacts upon the many wins out over that which impacts upon the few.

In its strictest definition a rare disease is defined as one that affects less that 0.05 per cent of the population – that’s one in every 2,000 people or based on the UK population less than 30,700 people living with a condition (which actually seems quite a lot to me – that’s half of Arsenal’s Emirates Stadium filled). In these instances of genuinely rare conditions, for which the EMEA has been encouraging the pharmaceutical industry to find treatments, it could easily be argued that there is simply no benefit in communicating to the mass media about them. An article in the Daily Mail just won’t make a quantifiable difference.

As a result it makes far more sense to get the right messages more directly to the people that need to hear them – especially the healthcare professionals who are going to spot the symptoms, diagnose the condition and access what they believe are the best therapeutic options for that person. On the whole Aurora would agree wholeheartedly on this approach and recommend this to our clients. It simply delivers a better (and more measurable) outcome.

However the interesting thing is that ‘rare’ has a much broader definition in the mind of the UK media. Rare can mean for example bowel cancer where more than 34,000 people are newly diagnosed each year or even epilepsy where 456,000 people live with the condition. Even these conditions and especially ‘positive’ news in relation to them can get bounced off the pitch really fast with the response that “this isn’t going to be of interest to my readers”.
Now I don’t want to paint too dire a picture here – it is just the reality of the challenge of media relations. Team Aurora has got mass media coverage for even the rarest of conditions including one that affects less than 500 people a year. You can get your messages out in the media but as a client and an agency effort we have to work really hard to make it happen (we also love doing it by the way).

The key things that you need to do is really segment the story, and yes that means lots of job bags to get a vast array of materials approved. Gone are the days when one core release can be used to communicate the news to all. One size fits all just doesn’t cut it anymore. We now need copious written as well as video collateral; we need multiple ‘quotes’ that address the different audiences; we need detailed media plans and analysis that assesses what a specific journalist has written about a topic in the past – so we can secure their interest and quickly deliver them the approved materials that they need.

Now the rise and rise of digital media further exacerbates this need to segment (and have more job bags – aargghhh) and creates amazing opportunities to get the right message to the right people.

The digital media world is often not as commercially driven (and is causing the traditional publishers to experience crippling tumbles in revenue – but that’s a whole other blog post topic) and is far more niched to a specific audience than their mass media counterparts. As a result, online outlets can be more receptive to publishing positive orphan drug information and hey presto the chances of information reaching those that need it is increased. In addition, the search engine has revolutionised the ability for that information to be found by those on the hunt for it – Google is most definitely the benevolent uncle of rare disease information.

So all is not lost – we just have to work harder and smarter than ever before. We just have to accept that when communicating about a rare disease or its treatment, we, like Master Twist, need to be artful dodgers, while remaining Code compliant (unlike Fagin’s mob), and duck and dive to get the right messages out there about the orphans that we look after.

This way we can serve up more.

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