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COVID-19 has changed the way we must talk about treatment for rare diseases

The turbulence of the last year has brought into sharp focus the difficult choices to be made when it comes to healthcare prioritisation. There is now more of a reluctant acceptance that there will always be someone or something that will miss out so the ‘unjust’ emotional argument won’t resonate in the same way anymore. In her latest blog, Hanover Health’s Emma Gorton considers why in the wake of Covid-19, communicators must change their narrative around the treatment of rare diseases.

By Emma Gorton, Senior Director, Hanover Health

With the announcement of the roadmap earlier this week we, tentatively, start to emerge into the new normal. As we begin to see what the end looks like it also causes us to look back and reflect on the turbulence of the last year and how it has changed us as individuals, and as a society. One of the remarkable aspects of the response to COVID-19 is the wide-ranging points of view it conjured - from lockdown sceptics to those who felt the measures weren’t going far enough. This also extended into the public debate on the cost of the response and how that money was being spent.

In the UK, new hospitals were opened, PPE was purchased, testing resources were secured and deals were made to purchase vaccines, all to tackle this new threat. Across the world other health systems were all doing the same. On top of this, stringent lockdown measures were implemented that also required funding, resulting in the instigation of furlough payments, grants and loans. We have watched as difficult decisions have had to be made around what to prioritise, whether that’s extra funding to directly protect people from this new health threat, or financially support people to keep businesses solvent as their customer base disappeared. Never before have these difficult choices around public spending been thrashed out so publicly. These challenging decisions and ongoing debate stem from the fact that there simply is not enough money to go around. However in the healthcare space we have seen this play out many times before, and have had to watch difficult decisions be made around which patients will miss out. In the past this has been particularly prevalent in the rare disease space.

In an ideal world we would only be held back by the speed at which we can develop the science. However if COVID-19 has taught us anything it’s that this certainly isn’t an ideal world.  Unfortunately one of the common trends in rare diseases is the ongoing challenges these patients face to gain access to treatments. These debates often play out in the media and can be heart breaking as it brings into sharp focus the unjustness of health. Our technology, science and innovation are more advanced than we can afford to pay and that means there will always be an element of prioritisation about what should be paid for by the state. The public have clearly been heavily involved in the discussions around COVID restrictions, with members of the public able to ask questions in the daily press conferences, vigorous social debate about how to prioritise different demographics in vaccine roll-out and which industries are most critical to protect.

Perhaps this is the first time the wider public have been exposed to the fact we do put a price on life and the first time in a generation that as a society we’ve really understood the choices that have to be made in prioritising healthcare.

So whilst this is nothing new for those in the rare disease space, what has changed is the public experience and knowledge of these difficult decisions. Perhaps this is the first time the wider public have been exposed to the fact we do put a price on life and the first time in a generation that as a society we’ve really understood the choices that have to be made in prioritising healthcare. In the past we have often used this to our advantage in communications campaigns regularly deferring to the ‘away from’ approach. We would paint a picture of a scenario that we didn’t want and mobilise emotion, making it not acceptable to go down the route we didn’t want, asking ‘how can we avoid this suffering, how can we reduce this burden, how can we stop this pain?’

However with COVID we are experiencing a fatigue of the negative and this level of emotional debate is unsustainable. There is now an acceptance that some people will miss out, and the public understand why that is the case financially, so the ‘unjust’ emotional argument just won’t resonate anymore. Instead we need to inspire and to move towards the positive, creating a vision of what we could have. This way we can motivate our audiences to join us in bringing about the change we’re trying to achieve. Finding this ‘positive’ or future promise is something many new therapies coming down the line will need to do to launch successfully. We are on the cusp of curative therapies, and we’re ushering in a new generation of precision medicine - all therapies with a big price tag. They all have a really positive story to sell but their success will live in finding it. Ultimately bringing this positive narrative will do so much more than just support the therapy areas we work in, it will also help to shape the reputation of the industry. We are lucky enough to work in an industry that can create amazing futures, and for too long we’ve focused on the problems we want to solve rather than the futures we want to build.

9th March 2021

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