Author: Natalie Hoegen, Client Partner

As an agency, we always have the mindset to try to do more, make more of a difference, and to support our clients in our joint mission of improving patient outcomes. No where else is that truer than in rare diseases.

The unique aspect of rare diseases – that is both incredibly humbling and motivating – is how patient communities persevere throughout an uncertain, and often lonely and frustrating, journey of living with a rare condition. Patients and their caregivers work hard to make their voices heard and demonstrate an incredible commitment to supporting each other through sharing their own experiences. If you ever look for purpose in what you do, working to support patients living with rare diseases is where you can find it, and where you will be truly motivated to find better solutions for these individuals.

This community perspective means the rare disease space is very tight-knit and is based on relationships with close communication between people living with the disease and those who look after them – whether that is a specialist or a family member. Importantly, these people are experts in dealing with a rare disease from any angle, whether living with the disease or treating it. It is this aspect that we believe is a crucial consideration when approaching a new treatment launch in this area.

We know that significant advances are being made in rare therapy areas. The rare disease landscape is evolving, as we see the improvements in identification, targeted treatments and more awareness being driven across the globe. But we also know that despite many pipeline products on the horizon, there are still challenges to approvals, uptake and speed of getting treatments into the hands of patients. A new product demonstrating great data does not always lead to an immediate uptake or even a first step to approval without challenges. That is why perhaps it is more so that treatments in rare disease are rare, more so than the collective number of rare diseases themselves. As a community of rare, perhaps there is value in a shared community approach that benefits not just one, but many.

Wherever there are people involved, there are human beliefs and perceptions that influence behaviours – and this is where I believe we can contribute to making a difference. Understanding nuances in people, countries and cultures as well as how they perceive themselves, possible treatments, their community and pharmaceutical companies, are critical factors that can make or break launch excellence.

Launching a new treatment or solution requires setting out the foundation; simply having a possible solution does not ensure success. Preparation and insight to collaborate meaningfully with community stakeholders and understand how a launch impacts them is key, and can vary dramatically. Significant cultural differences that exist across Europe add levels of complexity to every stage of the launch process; not only are diverse cultural aspects at play during reimbursement procedures (not to mention during continuous scrutiny of national healthcare budgets), but are even an important factor at Opinion stages.

Therefore, listening, understanding and evolving is key to a launch. Being aware of cultural nuances – such as how the launch plan is being received by different stakeholders in different markets or how relationships among stakeholders are progressing – is key to enable us to adapt plans and bring agility to a launch.

Having experts in these areas is a key part of our integrated approach at Havas Life Medicom. Our Brand Navigator structure means we can offer an integrated and connected approach across disciplines – from Medical Affairs and Education to Corporate Communications, Patient Advocacy and Engagement, and Commercialization. Everything is rooted in strategic insights to understand what to consider and drive when, how and, most importantly, why. We start with great listening and insights to focus on what really matters at launch for key stakeholders, and we don’t assume we know all the answers without asking the right questions – because there is no ‘one size fits all’. Not when it comes to rare diseases and not when it comes to Europe. Understanding the challenges and nuances that help identify opportunities to improve patient outcomes is critical.

On a unique leap year we are reminded how rare it is to launch solutions in rare disease. We owe it to the rare disease community to demonstrate a shared commitment and passion, ensuring we help to bring more treatment solutions where they are so needed. That’s why it matters.

“You can't rely on health professionals all the time because they don’t always know the condition as well as you do.”

Our work in sickle cell for the Code Red campaign, to reach an underserved and disillusioned patient community, is a great example of where we have immersed ourselves in the lived experiences of patients who have a rare disease. Through our partnership with the leading UK patient advocacy group, we learned about important nuances within the social and cultural realms of their experience. This enabled us to tailor our campaign in the right way, giving a much-needed voice to this underserved community so they could connect and unite to break the silence and isolation surrounding their condition.

For patients living with immune thrombocytopaenia, another rare blood disorder, we identified the strong need for positive role models to offer hope and reassurance to those newly diagnosed and fearful about the future. Working with a gold medal winning marathon runner to share his story of achieving greatness, despite his condition, we helped to inspire this rare disease community to focus on managing their condition to allow them to live life to the full.

Connecting with patients on an emotional level is key to the success of any disease awareness campaign. Although we may have to work a bit harder to identify and reach those living with rare diseases, we can use our Human Experience framework to help us delve deeper. Hx allows us to understand patients’ lived experiences, motivations, and behaviours, so we can build communications campaigns that effectively influence change.

“I like interacting [with other patients] and listening to real stories. It helps to see real people with real life situations going through the things that we're going through or might go through, it makes you feel less alone.”