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International Epilepsy Day 2021: Reflecting on our journey and stepping into the future of epilepsy

Charl Van Zyl, Patient Value Neurology & Europe/International Solutions
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Charl Van Zyl, Patient Value Neurology & Europe/International Solutions
08-Feb-2021
 
Today marks International Epilepsy Day (IED), a special day where people from around the world come together to raise awareness of epilepsy and the challenges faced by patients, their families and carers. Recognized on the second Monday of February every year, this day provides a platform for 65 million people affected worldwide who are living with the disease.

Epilepsy is a chronic brain disorder characterized by recurrent seizures that affects people of all ages. The epilepsies are very heterogenous and consist of several hundred diseases or syndromes, which can lead to a myriad of physical consequences. Greater still, the psychological and social impact of living with epilepsy can be detrimental for a person’s quality of life; particularly in recent times with the isolating consequences of COVID-19. Recent studies indicated that while the risk of COVID-19 in patients with epilepsy is not thought to be higher than in healthy people, psychological stress from COVID-19 has been reported to be greater in people living with epilepsy. As such, initiatives such as IED remain invaluable to raise the profile of the fourth most common neurological condition in the world.

This year’s IED initiative challenged individuals to increase the visibility of epilepsy by taking part in the “50 million steps for epilepsy” walking challenge; a campaign which aims to increase the understanding the journey that people living with the disease take each and every day. The path that patients need to take is often a long one; despite the accessibility of treatments, one-third of newly diagnosed epilepsy patients remained untreated up to three years after their diagnosis. At UCB, we are committed in reducing this path to seizure control and have been driven to finding a solution for many years.

With over 20 years of research and development of novel anti-epileptic drugs (AEDs), we strive to use expertise, knowledge and resources to improve epilepsy care and meet the diverse needs of people living with the condition. However, despite the significant developments over the years, our team recognizes that more must be done to narrow the treatment gap and improve patient experiences.

“At UCB, we aspire for better outcomes and experiences to help patients live their ideal lifestyle, striving for freedom of symptoms today and anti-epileptogenic options tomorrow. Our overarching ambition is to provide sustainable patient value via a diverse core of differentiated medicine-based and technology-leveraged solutions that address patient need and deliver better outcomes,” added Alexandre Moreau, Global Head of Epilepsy at UCB.

While we have taken tremendous steps over the last 20 years, there still remains a long road ahead to deliver the level of care that we aspire to achieve. As such, we find ourselves entering a new era of epilepsy management where new avenues are leading us to alternative solutions. With plenty of work still at hand, we are a passionate to continue our journey in providing the most efficient care for those most in need. Such avenues include:

  1. Partnering to meet unmet needs: Through our investment in Nile AI, Inc., who is developing a digital epilepsy care management platform and bringing together data to make the epilepsy journey predictable, there are future opportunities to acquire insights and data from Nile’s platform.
  2. Delivering scientific innovation: We’re contributing to cutting-edge research in epilepsy that may help pave the way for future treatment options. We’re embracing the convergence of science, medicine and technology by exploring exciting new approaches which, in the future, could provide individually tailored solutions for people with epilepsy.
  3. Sustainable access to treatment: The treatment gap in epilepsy is not a phenomenon confined to developing countries, but an issue that is also prominent in high-income nations, and one that needs to be addressed. We are dedicated to the goal of ensuring that all patients have access to individualized solutions tailored to their individual needs.

As we continue our path to improve experiences for people living with epilepsy, we are excited to be at the forefront of new collaborative solutions to provide the best access of care in one form or another. While many obstacles lie in the path ahead, one thing is for certain, UCB will be there every step of the way. Keep an eye out on UCB’s social channels for more insights on our progress in epilepsy management.

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