Making a Difference in Terminal Diseases


Words by Isabel O’Brien


While new discoveries and game-changing innovations are constantly emerging from laboratories across the world, there are still vast numbers of conditions with no cure. The pharmaceutical industry strives to develop best-in-class treatments, but in disease areas where a breakthrough is yet to be made, ensuring a patient has a high quality of life as well as that they feel supported, seen, and heard becomes the priority. “The patient’s well-being and quality of life is a crucial aspect of our work,” affirms Edmond Chan, Senior Director, Europe, Middle East, and Africa, Therapeutic Area Lead, Haematology, Janssen, speaking on the EMG GOLD Podcast. “We are constantly looking at how can we improve patients’ lives outside of the treatment itself.”


The patient’s well-being and quality of life is a crucial aspect of our work

A recent report by Marie Curie revealed that 7 out of 10 people with terminal conditions feel like they do not find the kind of care and support they need. While this is an issue that is complex and multi-faceted, it also illustrates the importance of disease awareness activities that focus on this patient group in particular. “Health and disease can be messy and, despite great advances in the treatment of conditions, there is not always a happy ending,” says Claire Gillis, CEO, VMLY&Rx. “But this shouldn’t stop us trying to raise awareness of terminal conditions and what they might mean for patients, carers, and families affected by them.” While disease awareness campaigns for all conditions are stringently important, they are most needed in the realm of terminal illness.


The question lies in what criteria must be met to ensure that campaigns to raise awareness are effective: how can a company make a difference to a terminally ill patient with their communications?


“Like all campaigns, those that deal with terminal disease need to capture honest patient perspectives – even if the truth makes us uncomfortable,” says Gillis. While authenticity is universally key, the use of stereotypes can be particularly harmful in this instance and must be avoided. “In terminal disease, the stakes are higher. There is no time to get it wrong. Every message matters,” she says. Gillis’ team recently worked on a campaign around advanced breast cancer (ABC) called the ABC Alliance, which took the form of a film that captured real stories from real women with ABC. “The creative doesn’t need to be gruelling or graphic, but it does need to connect. It needs to say: ‘We see you. We hear you. We know what you’re going through. You’re not alone’,” says Gillis. By creating campaigns that are patient-led and sensitively executed, communications have the potential to connect with terminally ill patients as well as illuminate the nuances of their reality to the wider world.


In terminal disease, the stakes are higher

The power of awareness campaigns like this should never be underestimated, while the campaigns themselves can draw positivity from a difficult diagnosis, their creation also unites disease communities that are often all too disparate. “Awareness campaigns are great opportunities for the whole community, including the industry, patient groups, people living with, and affected by the conditions, to really stand together and to speak with one strong voice,” says Vanessa Pott, Director, Global Patient Insights and Advocacy, Merck KGaA, also speaking on the EMG GOLD Podcast. Aligning with Gillis, she says the key questions to ask are: “What matters to the people living with those conditions? What is it about their lives that they most miss or most want to maintain?” Even when there is not a light at the end of the tunnel, there are still lives to be lived and it is crucial that terminally ill individuals are empowered and supported to make the most of the time they have left.


While the industry’s focus will always be on innovating more advanced and effective treatments; improving the quality of life of patients with terminal conditions must be a growing priority for teams across all functions. “We need to push ourselves to think how we can offer more to improve patients’ lives,” concludes Chan. Great strides have been taken, but more can be done to help individuals facing the most challenging diagnoses feel better supported, seen, and heard.