At Galapagos, we take pride in discovering, developing and delivering innovative medicines to improve the lives of people with debilitating diseases. We are experts in science, in medicine and in making sure our medicines reach the people who need them the most. But when it comes to understanding the impact of diseases on patients’ lives, the real experts are the people who live with these conditions day-to-day.
In my role as Patient Advocacy Lead at Galapagos, I feel privileged to work closely with various patient communities and organizations to better understand patient perspectives and needs, and to co-create solutions to address pressing challenges. By embedding patient engagement across the lifecycle of medicines and working with patients, for patients, we believe we can make a meaningful difference for patients, their caregivers and families. We outline this commitment in our Patient Partnership Charter.
Almost every single day, I’m learning from the patient communities I work with, but there is always more to discover in my constantly-evolving career. In the lead up to World Arthritis Day (12 October 2022), I was delighted to be joined by Mireille Verscheure, RA Liga (Belgium), and Heidi Quintyn, Reumanet (Belgium), who shared their experiences of living with rheumatoid arthritis (RA) at our latest ‘Meet the Experts’ session. Here are a few insights from this very honest and thought-provoking conversation.
Listening to the unique experiences of patients is essential to improving understanding, support, and management of the disease
Both Heidi and Mireille shared their “totally different” journeys with RA, from diagnosis through to management. While their personal experiences were unique in many ways, both agreed that RA can take control over their lives, defined by “pain”, “fatigue” and “unpredictability”. The discussions highlighted that, although disease severity and symptoms vary from person-to-person, RA threatens all aspects of day-to-day life, whether that be work, social activities or physical exercise.
Adding to the challenges of RA and the unpredictability of symptoms, Heidi commented, “some friends and family members understand, and others don’t because, in fact, you don’t see [Rheumatoid Arthritis]; it is a disease that is not visible.”
Both Mireille and Heidi’s experiences highlight the opportunity and essential need to understand the perspectives and goals of people living with chronic inflammatory diseases, and to put these at the heart of research and management to drive better quality of life outcomes.
Patient empowerment is enhanced through collaboration
Patient organizations play a crucial role in education, as well as offering patients access to wider communities so they don’t feel alone upon diagnosis, and afterwards. Speaking on the scope of Reumanet and RA Liga’s work, Mireille and Heidi highlighted that patient organizations bring a realm of expertise and provide an important bridge between the medical and patient communities to ensure that information is accessible to all patients.
Industry, medical and patient organizations each bring different expertise in RA, and collaboration is vital to driving better outcomes for patients. Mireille noted, “there has been an evolution in the communication and strategy [between stakeholders],” which has facilitated this collaboration and allowed patient organizations to play an earlier and more active role to educate, support, empower and ultimately help patients.
Earlier diagnosis is key to improving clinical outcomes
My discussion with Mireille and Heidi highlighted a need to drive greater awareness to support earlier diagnosis, address misconceptions and increase public awareness that, “RA is not an old person’s disease.”
To drive earlier diagnosis, milestones like EULAR’s World Arthritis Day place a much-needed spotlight on RA to help spread awareness among the general public and, importantly, potential undiagnosed patients. RA-Liga has also recently launched a mobile art exhibition in Belgium, to represent the experiences of people with RA. Galapagos was proud to collaborate with Belgian artist Kris Leys to contribute to this exhibition (see image).
Collaboration and patient empowerment play an equally important role in supporting earlier diagnosis. Speaking from experience of delayed diagnosis, Heidi said, “Doctors should also look at the history of the patient,” when presenting with potential RA, rather than relying exclusively on clinical measurements, such as blood tests, as these alone cannot definitively diagnose the condition.
Artwork commissioned by Galapagos for RA-Liga’s exhibition:
- White symbolizes hope for a better future
- The yarn illustrates the pain and fragility associated with RA
- The metal rods represent the fighting spirit and perseverance of people with RA
- The overall concept depicts day-to-day scenarios experienced by people with RA, including attending a doctor’s office, working in the kitchen or walking the dog
My thanks to Mireille and Heidi for helping to raise awareness of the realities of living with RA through sharing your personal experiences.
For me, this discussion reinforced the importance of stakeholder collaboration – between the medical community, patient organizations and pharmaceutical industry – to empower the patient community and continue to drive improvements in diagnosis, support and management of chronic diseases like RA.
You can watch the full discussion here.
INTERVIEW BY Marina Sardone
Patient Advocacy Lead at Galapagos
Hi, I’m Marina Sardone and I lead the Patient Advocacy function at Galapagos. My focus is working as a change agent, to help the company move along a cultural shift towards systematic patient engagement. The aim is to embed patient engagement in our ways of working, making sure that we are incorporating the patient perspective in everything we do. To help colleagues be more engaged with the patient community, I am also leading the Patient Organizations Engagement Team (POET), whose main objective is to oversee and coordinate patient engagement activities across all departments to ultimately ensure consistency and alignment with the principles captured by our Patient Partnership Charter.