With more than 20 years of experience in caring for people living with epilepsy, our goal has always been to know and understand, better than anyone, the day-to-day experiences of people living with the disease. Over the past year, this has been especially true. During the pandemic, stress and anxiety have certainly taken a physical and emotional toll on everyone, but especially those living with severe diseases like epilepsy. Despite the physical distance and separation over the past year, the pandemic has helped us reimagine how we might better connect with patients in the future and has reinvigorated our commitment to their overall emotional and physical well-being.
As we begin to take the necessary steps toward recovery, we want to recognize the ways in which this year of distance has brought us even closer to our core commitment of understanding all aspects of living with a neurological disease. It has given us a clearer awareness of what patients need and value, allowing us to develop solutions that provide them with the necessary physical and emotional support critical to managing chronic conditions. Today, in this new phase of healing, we are moving forward even more dedicated to improving the lived experiences of patients not only though treatments, but through compelling action. This week, during the American Academy of Neurology (AAN) virtual meeting, we have the opportunity to share our latest data and treatment advancements, and more importantly, to discuss the lessons we have learned that will help us continue to meet patients where they are along their healthcare journey to transform the future of care.
Understanding Patients’ Emotional Needs Through Data Analytics
In an effort to better understand what epilepsy patients are feeling, we have teamed up with Cognovi Labs, an innovative emotion analytics company, to gain insights into the emotions that drive patients’ decisions and shape their behaviors. The research – called EMOTION AI – leveraged machine learning and behavioral psychology to reveal the range of emotions patients have experienced during the pandemic.
This research showed us that people living with epilepsy experienced an increased sense of fear and uncertainty. With great reason, patients have become hyper-focused on increased risk of seizures, prioritizing survival, and putting individual interests and pursuits on pause during the pandemic. Taking the lessons that we have learned from the past year, patients remain at the heart of our pursuit to create solutions so people can live their best lives, whatever that means to them.
Innovative Science for Improved Day-to-Day Experiences
UCB keeps patient outcomes at the center of our science, medicine, and research to help create better day-to-day experiences for patients. This week during AAN, we shared some of the latest data on our medicines and from our research pipeline reinforcing our neurology passion and demonstrating our expertise and commitment to the goal of addressing and improving the lives of people living with severe diseases like epilepsy.
Along with our medicines, and especially during the pandemic, health equity is top of mind for our industry. We have seen existing health disparities lead to devastating effects in communities that have been historically underserved. Our work with Arizona State University (ASU), presented this week at AAN, aims to better understand how social determinants of health (SDoH) impact epilepsy diagnosis and access to care. We know that one-third of newly diagnosed epilepsy patients in the U.S. remain untreated with antiepileptic drugs for up to three years after diagnosis; and until now there has been little research to explain these extended delays to treatment. Our research with ASU reveals how SDoH such as health care setting, race, marital, and economic status play a role in how promptly people living with epilepsy receive care - which can have negative impacts on both a patient’s physical and mental health. We hope these findings can continue to help us uncover new ways to address gaps in care by identifying tools and solutions for health care providers, health systems, and patients to ensure they are receive the treatments they need at the earliest possible time.
UCB’s Vision for the Future of Care
In addition to our focus on epilepsy, UCB remains committed to expanding our portfolio of solutions to better support people living with rare neurological conditions like generalized myasthenia gravis (gMG). This week at AAN, we’re also presenting a co-authored, patient-led poster which aims to shed additional light on the day-to-day experiences of living with gMG. We hope this analysis could provide pivotal insights into the reality of living with gMG and that, in the future, this might support healthcare professionals to improve understanding and management of this rare and often times debilitating neuromuscular disease.
Further, UCB’s vision is to move from symptomatic treatments to disease modification and eventually towards a cure, as evidenced by our recent acquisition of Handl Therapeutics BV, a rapidly growing and transformative gene therapy company based in Leuven, Belgium and a new collaboration with Lacerta Therapeutics, a Florida-based clinical stage gene therapy company. The new acquisition and collaboration will together serve to rapidly accelerate UCB’s ambition in gene therapy.
Despite the challenges we have faced over the past year, we are excited about the progress we have made during difficult times to better understand the physical and emotional needs of patients living with neurological conditions. As we enter into this new phase of recovery with renewed hope, we remain more dedicated than ever to the work we are doing to continuously change and improve the way we care for patients – quicker, purposeful and with continued urgency.